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Tuesday, July 28, 2009

Women's Privacy Concerns Part 2

This thread has also reached the limit and is now closed. Please continue posting on Part 3.

191 comments:

Joel Sherman said...

The response to part one has exceeded expectation. I'm thankful to all who have participated and expressed their appreciation for the chance to discuss these issues.
Please continue to post.

Joel Sherman said...

This reference was given on Part 1 concerning ethical practices in the UK for cervical cancer screening: J Med Ethics 1998;24:151-157.
It is available online though you may have to go through a registration procedure.
It is well worth reading and certainly makes the case that informed consent is ignored in the UK in convincing women to get pap smears. It is worse in the UK because physicians have a financial incentive if they meet the screening goals.
The US does not have financial incentives although their initiation is being talked about in a general way in new health insurance programs.

An unrelated topic in the news today is that a new HPV vaccine has been linked to a death in the UK. One death doesn't prove anything and any relationship is unproven, but it's worth being aware of.
I am indeed learning more about cervical cancer than I ever wanted to know before.

Ruth Mc said...

I have never understood the huge resources, time and effort put into cervical cancer.
I understand it is a very nasty disease...but it is widely acknowledged as uncommon.
The figures suggest very uncommon.
It has always seemed to me that the response is out of all proportion to the risk.
You would be careful expressing that sentiment though...

I think the "over-treatment" has made women think this cancer is a major problem.
Ironically, the unreliability of the test has pushed up the profile of this cancer.
Before testing, it was never mentioned, discussed or worried about...
Since testing, we don't hear about anything else.
In fact, we are constantly monitored, at almost every visit to the Dr, your file is checked "Now, when was your last test?"
It seems nothing is more important.
No wonder many women think this cancer is the only thing they need worry about.
Even breast cancer takes a back seat to cervical cancer, which shows logic and facts don't come into it.

As an older woman I can recall pre-screening days and can compare those days to now.
I can't believe the amount of worry, stress, pain, damage, shame, embarrassment, inconvenience, humiliation, intimidation and fear there is about a cancer that we never heard about or was worth mentioning.
Chatting to a few retired doctors in the family...none of them can understand it. Only one ever saw a case in all their years of practice.
They believe it's politically generated and a misallocation of precious health resources that ends up doing more harm than actually "saving" women.
In practice, they never felt compelled to discuss this cancer with women because it wasn't common enough to worry about...why frighten women about something most unlikely to ever bother them?
They said the current situation where you have women being challenged at every turn and frightened to death over this cancer is hard to fathom...
It would be like talking about thyroid or bone cancer endlessly and organizing national screening for those cancers even if it means putting lots of people through harmful investigations to catch a case here and there.
It would be dismissed as utter nonsense.
It wouldn't happen because the threat just isn't big enough. Yet that didn't stop them with cervical cancer.
The retired doctors felt "if anything" an education programme about limiting partners, always using condoms until you're in a mutually monogamous relationship and avoiding intercourse until you're at least late teens would be more helpful than the current approach which seems to be "creating" a huge and frightening threat, throwing huge resources into it and harming lots of women in the process.
I have always agreed with them.
Although emotions run so high and people's thinking has been so manipulated, you keep those thoughts to yourself.
Just recently on the radio they were talking about women's health...20 minutes talking about cervical cancer and "other things" got a couple of minutes.
Nice to find a place where women feel brave enough to speak their minds.
Great that at least a few of us still question all of this testing and treatment.
I'll never agree that cervical cancer is a major threat to all women because I know that is simply not the case.

Joel Sherman said...

Here's another interesting tidbit on cervical cancer screening from China of all places.
They claim that HPV DNA testing is more reliable than a pap smear in predicting who will develop clinical cervical cancer.
I have no idea if this test is available in this country and no idea if it is practical, reliable or affordable. But it's worth being aware of.

Hexanchus said...

Joel,

The HPV genetic test is available in the U.S. - I've seen TV adds promoting it in addition to the Pap smear. I suspect whatever pharma company manufactures the test is behind the add. It has that same "ask your doctor about" approach that you see with adds for Nexium, Cymbalta, etc. It's likely that it's not in the formularies covered by most health insurance......

Joel Sherman said...

Thanks Hexanchus. Once again you're very correct. I'm not exaggerating when I claim incompetence in most women's issues. I offer a forum here, not expertise.
Here's at least a starter reference on the DNA test.

Anonymous said...

"Although HPV is found in both men and women, this test is not used on men."

Dr. Sherman,

In the starter reference you gave on the HPV test, it is this statement that really gets my goat, so to speak. If HPV also is found in men, then I would think it would make sense to have them undergo regular HPV tests as we women are so often pressured to do. Having men do so would alert them and hopefully their partners/potential partners of any possible risks or problems. Seems to me this is a case of what's good for the goose is good for the gander.

HIV is spread through sexual contact and there doesn't seem to be any distinction between men and women as far as testing for that goes. Why can't the same be said for men and HPV? Why is there not more encouragement for men to be tested for HPV, as they are the ones passing it on to their partners? Even if it doesn't directly affect men's health, it does sometimes affect the health of their partners. Again, I'm not a doctor, so I probably don't have a clue about any of this.

Susanne

Joel Sherman said...

Susanne, I have read several times that there is no HPV test that can be used in men. Once again, I don't know much about this subject and I don't know why that is true, but that is apparently the present status.

Anonymous said...

I'm not surprised there is no test for HPV for men.
The have had a male birth control pill for many years but apparently "market research" suggested the market was not large enough to make it economically viable...
My friend is an executive with a pharmaceutical company.
With HPV, it seems it's a bigger problem for women just as pregnancy is a bigger worry for them, so fewer men would bother with HPV testing or birth control.
They are not my views.
I would use a male BCP if it were available (or consider it anyway) and take a HPV test if necessary.
I also think men feel differently about these things when they're emotionally involved and actually in a serious relationship.

Anonymous said...

None of the information given to us is factual.
My doctor and lots of others always say young women are at greatest risk.
Wrong...the reverse is true.
Your risk goes up with age or it is more common in middle age and older.
In other countries young women are often left out of testing because they are so unlikely to have cancer and end up having LEEP for nothing.
My doctor still tries to tell me young women are at great risk even ones not yet sexually active.
I'm not confident enough to say anything.
The motives can't be medically and factually driven.
vanessa

Beth C-H said...

We're fortunate that finally some sense is returning in the UK after pap smear madness for many years.
It is now possible to criticize this screening...and we've heard more and more of just that...safety in numbers!
Angela Raffle is a high profile consultant to the cervical cancer screening programme. You can hardly write off her comments as those of a reckless lunatic when she's one of your own people.
Her honest and very enlightening assessment of the Bristol programme was published in the BMJ and widely reported much to the chagrin of our doctors.
She mentioned there was no discernible effect on the death rate from this cancer despite the screening programme in Bristol, the problem of over-treatment, trying to limit the harm to women and finally, stating the programme should be a lesson to others not to implement a screening programme before its been properly and scientifically assessed and evaluated.
In other words, it shouldn't be a work in progress....using us as guinea pigs.
It is amazing that it took so long for these things to filter down to women. It does go to show the power doctors have over us and how checks and measures must be in place to protect us and our rights.
Most women would have been afraid to say anything negative about the programme and others accepted the propaganda hook, line and sinker.
Propaganda is the right word for the fierce promotion of this test.
It is still very difficult to refuse screening, but now we at least have some powerful and impressive allies we can quote as we fight off our doctor's frantic warnings.

Joel Sherman said...

Susanne asked yesterday why HPV is not done in men. The answer can be found in this reference:

There is currently no FDA-approved test to detect HPV in men. That is because an effective, reliable way to collect a sample of male genital skin cells, which would allow detection of HPV, has yet to be developed. However, the Centers for Disease Control and Prevention advises men that they don't need to be worried about the lack of an HPV test for them. The agency states that "there is no clear health benefit to knowing if men have this virus, since HPV is unlikely to affect their health and cannot be treated. For most men, there would be no need to treat HPV, even if treatment were available, since it usually goes away on its own."

Obviously that last sentence ignores the benefit that women would derive if HPV could be eradicated in their partners. I'm sure many men would agree to be treated if they knew about it and if a treatment was available.

Anonymous said...

That statement makes me really angry and that attitude is clearly part of the problem.
They're quite happy to put women through pap smears and almost everyone through the horror of biopsies...yet if men could be tested they'd be no need for either...
As I understand it...if a woman is a virgin and has her partner tested and he's negative then she can forget about cervical cancer.
My reading suggests that if you haven't been exposed to HPV, you can't get cancer. You must have that in your body.
If that relationship ended, your next partner could be checked...
Of course, people who have one night stands would still be at risk, but that's their choice.
Condom use helps...
I read the article linked...which showed college girls had at least 70% less HPV if they insisted on their sexual partners always using condoms.
I find the readiness the medical profession has to put women through very intimate testing and procedures unacceptable.
The entire problem should be addressed and that includes men.
Also, any sort of testing would be better than nothing...if they took swabs from the genital area as they do to detect other STI's, that might pick up HPV...so why not make it available? Something is better than nothing especially when it wouldn't risk a man's health by leading to biopsies or anything else.
I think they know a HPV test for men would make it possible for women to protect themselves.
Testing and procedures might become a thing of the past or happen much less often and doctors probably think that's a bad thing for their bank balances.
I also think some doctors like the intimate power they have over women.
Leisa

Joel Sherman said...

I feel compelled to note that the teenager who died in the UK after an HPV vaccine apparently died of an unrelated cause as revealed by autopsy.
At least it's one less item to worry about.

Clemmy said...

I didn't want cervical screening. I knew my risk was low, despite what I was hearing from doctors. An intimate exam and low risk was enough for me to refuse the test.
I found out about over-treatment many years later.
Few women know where this test can lead a well woman.
Doctors assume we all have cancer, forgetting most of us don't.
I always thought I'd have mammograms though.
I don't
I saw something in the newspaper that worried me and decided to buy a couple of books on screening tests.
I read about all the negatives.
These things aren't mentioned by our doctors or in the information leaflets.
Only 56% of women are having mammograms and a number of women accept their first invitation and never go back.
Breast Screen intend to ramp up their campaign and knock us into shape.
The paper mentions a number of reasons for our poor attendance.
Embarrassment, humiliation, discomfort, ignorance or inconvenience.

It is now well known that there are risks with mammograms - the cat is out of the bag. Even here in Australia, were doctors have done well to hide the risks, word is out.
The risks are well known to English women. I suspect American women are behind us...the doctors there are very keen on screening and most women seem to spend a lot of time having medical exams and tests.
Not once did the feature mention concern about risks or that the first mammogram may lead to more testing in a cancer-free woman. These women may be put off or look into it more.
That made me angry and I've sent an email to the Editor of the paper.
Clearly, they've been given these reasons by doctors and are feeding it to us.
There is another BIG reason why women are refusing mammograms...RISK.
They know the risks and keep asking us to have mammograms.
Most women don't know the risks.

They're thinking about numbers and pretending there is no risk.
They need to forget their target of 70 or 80%.
If only 50% of women accept their screening invitation, that should be good enough.
I still hope that the 50% know about the risks though...
I think all these tests have a negative side and we all need to be careful.
Lots of great information on this forum.
http://www.theaustralian.news.com.au/story
/0,25197,26047148-2702,00.html

Anonymous said...

Most women never hear about the risks of any of these tests.
Many of us read women's magazines that talk about cervical cancer like it's as common as headaches. There are way more articles on pap smears than mammograms. I didn't know doctors get paid to hit targets...that makes sense now. If you get a performance bonus for selling BMW's, then you'll sell BMW's every time.
You won't mention the problematic transmission or brakes that might risk your safety...you wouldn't say anything that might put people off...you might even embellish the truth...forget about the flaws and spend money on expensive advertising.

We should, if we thought about it, realize our grandmothers were fine without pap smears. The rare case was an unlucky woman who got cervical cancer...like the unlucky man who got testicular cancer.

It's hard to reach risk information. Look at the reaction of the other doctor from the "blog that ate manhatten" site when women started to say things she didn't like, who didn't play by the rules...when they expressed opinions, asked direct questions or said they wouldn't be having the test....she shut down the topic to stop women thinking, reading and talking.
Even a female doctor fears, disapproves and stops women seeking answers and thinking for themselves.
Why does this threaten so many doctors? Why is it so unacceptable that it must be stopped?
What hope do we have when female doctors try to stop this discussion?
I think this is the one topic when doctors get angry...almost insulted and lash out at us.

Most women have busy lives and don't have time for private research and debates with doctors.
Some women would find medical journals beyond them.
Many have to rely on their doctors.

When you look at it, it does seem silly...asking all women to have an intimate examination and then having bits of your cervix removed trying to find those few women with cancer.
I'm so tired of hearing about pre-cancer.
Most pre-cancer never becomes cancer.
Taking off pre-cancer cells to cover the small chance it'll become cancer is an odd approach.
I wonder why the same strategy doesn't apply for other rare cancers.

I wonder, like many of you...why few doctors talk about the risks or mention it's a cancer we shouldn't be that concerned about?
It can't be fear of liability in every country.
A few students must have put up their hands to question this test in med school.
We all jumped on things that didn't make sense at University and put our lecturer to the test.
There must be doctors who feel they're doing the wrong thing by women.....the medical equivalent of selling them the BMW without mentioning the unreliable brakes!
(Sorry to compare the BMW with pap smears...the BMW in sharp contrast is a very reliable, safe and comfortable car!)
AND now it looks like I have to move on to reading about breast screening.

Ellie

Joel Sherman said...

In response to Ellie, I just want to make sure that you all know that bonus pay for meeting pap smear guidelines is unique to the UK. It doesn't occur in the US in general.
Though keep an eye on what happens if Obamacare passes. Then it could change as they have talked about pay for quality care.

steve... said...

Dr, this might help
Cervical screening is worth big money to Aussie doctors.
It explains the pressure women face to have screening.
I think the screening target has been revised down...possibly to reduce the extremely unethical practices adopted by some doctors to reach very high targets.
I thought the target was previously 80%, but as of this year it's 50%
Hopefully, pressure on women might ease with this change, although doctors still get sign-on and screening benefits.
http://www.medicareaustralia.gov.au/provider
/incentives/pip/payment-formula/cervical-screening-incentive.jsp

Kate W said...

I have no problem with screening in theory.
It's clear some people are helped by screening...the numbers are unclear, but some are "saved" by this testing.
It seems with cervical screening though...they are the lucky few.
We don't seem to count the numbers who have bad outcomes from screening.

My objection to screening is the determined efforts made to get us to screen, without telling us all relevant facts. It's almost a united effort to keep us ignorant.

I would have thought an invitation to screen for cervical cancer should include the following facts.

a) The numbers of women who'd die from this cancer in an unscreened world. (I've read it's 1%-2%, depending on the country and research...we're around 1.5%)
These statistics are not hard to find or unclear, so why not include them?
We then know exactly what we're dealing with in terms of risk.

b) The risk factors for the cancer.
It seems clear high risk women have the greatest chance of being helped by this test.

c) The number of women who currently die...how many were screened and unscreened?
(This would show that about 35% of women who die have had "Normal" pap smears, called a false negative)
This would remind women the smear is not perfect and to watch for symptoms regardless of their test result.
I think the fact these things are not mentioned put us in jeopardy.

Of course, we still won't know what risk factors were possessed by the unscreened women who died...were they low or high risk?

d) I think women should be told about the test itself AND,
considering a large number of women will have a false positive at some stage, in some countries, almost everyone, then surely women should receive information on colposcopy and biopsies - including the risks of these diagnostic tests BEFORE they agree to the Test.

Your decision to screen would then take into account the risk of the cancer, your risk factors and knowing what the test can achieve and where it can lead...you'd have the good and bad of testing.
What is so unacceptable about that approach?

At the moment we don't get that information.
We're told this is a life-saving test, absolutely vital for all women who've ever had sex.
We're told the test is painless, easy, with no side effects.
Is that entirely honest?

In Australia, a high number of women will have colposcopy and biopsies, almost all for false positives and things that wouldn't have become cancerous.
I think the figure is around 80%...
Surely that fact alone compels doctors to give us this information.

Is it adequate to give us the basics about the test itself and ignore what will follow for 80% of women at some point?
Just from a compassionate point of view, women should be told...a positive result causes terrible fear and worry.

Most women have the test in complete ignorance.
Armed with the facts, they might choose not to test or they'll screen KNOWING the risks.
I can't understand how anyone could think the current situation is fair to any woman.

The only reason I know about this testing and it's risks, is because I stumbled upon a text at University on Feminism and Health Care.

Joel Sherman said...

Steve, I meant to acknowledge your comment. Australia certainly does provide incentives for cervical screening. I really know only about the US. There could be other countries with incentives as well.
But I agree with the comments that the offering of incentives certainly distorts the process and makes informed consent much less likely. Providers can just say that their respective health services strongly encourage pap smears. Of course informed consent doesn't thrive under our US 'system' either without government incentives. The incentives are personal; it's likely a substantial part of any gynecologist's practice.

Anonymous said...

Doctors were against women being able to get the birth control pill over the counter.
Why?
They use the consult for other things like pelvic and breast exams.
We now know these things should be optional at best.
I don't accept that overseas doctors are all reckless idiots.

The argument then becomes, "we don't want women to get BCPs over the counter because we want to force them to have unnecessary exams." They want to take away choice...take away the optional.
As someone earlier said...these exams often send us off for more testing and can leave us with health problems.

Our doctors don't care about informed consent...they use BCP's to FORCE us to have unnecessary exams.
My friend's script was held back until she got a mammogram.
I've read on this site that it must be the woman's decision to have mammograms.
My question is: how can our doctors make a mammogram mandatory before providing a repeat script for BCPs?
Doesn't informed consent apply in this country?
Their professional bodies know what their members are doing...

These usual demands endanger our physical and mental health and our entire future.
If we refuse these things, we don't get the Pills and risk an unplanned pregnancy. We then have the risks of pregnancy and childbirth and having a child we're not ready for or don't want...
One of my friends at college used less reliable methods because of all the demands and got pregnant. She was able to get the abortion pill while on vacation. I think it might also be available here as well. (you probably need 10 exams first...overseas my friend bought the drug at the pharmacy)
Why should our health, security and happiness be at risk unless we give into a doctors unreasonable demands?
I think a principle is at stake.
I won't do it...and have been able to get protection without the exams.
Doctors can't force me to do anything.

I think BCPs should be freely available.
Doctors have abused the trust placed in them...and it's now clear BCPs are safe for most women. A simple questionaire and BP test would point out unsuitable candidates.

Joel Sherman said...

Some have argued that boys should be vaccinated against HPV just like it is recommended for girls. Here's a British study that explored that question and decided that vaccinating boys would not be cost effective.
I think that raises the question of whether it is in fact cost effective for girls. Has that ever been studied? Of course, cancer prevention programs should not be judged solely on cost benefits. But given that cervical cancer is a rare condition, it's not an unreasonable question to answer for girls as well, if you're going to claim it is pertinent for boys.

swf said...

More info on this vaccine.

www.lifesitenews.com/ldn/2007/sep/07092004.html

swf said...

I believe this is the U.S. study I meant to postabout mandatory vaccinations.
http://www.lifesitenews.com/ldn/2007/feb/07020204.html

Ruth Mc said...

The pap smear was never scientifically studied before it's fierce and wide spread promotion.
I doubt they'd bother evaluating the vaccine too much...
The frenzy around cervical cancer means...get out your tests and vaccines and round up women.
In the surgery, we're surrounded by brochures on HPV testing, Liquid Pap tests, vaccines...we'll need to be given a showbag shortly so we can carry them home.
As an older woman, I recall when the pap test was released for mass marketing.
One senior doctor felt it was far too premature and said so...
He was torn to pieces, quite unreasonably.
Few realize now...he was 100% correct. He warned them they had a poor understanding of the natural progression of the disease and that would lead to over-treatment.

In the early days, an abnormal pap smear meant a hysterectomy for some young women.
NOW we know young women produce a very high percentage of abnormal pap smears, for natural changes in their bodies.
Women under 25 have now been taken out of the program...however, it's taken many years to get to that point. The evidence was disregarded for as long as possible.
Normal, healthy, young women were put through hysterectomies or radical biopsies because they rushed out this test.
There is acknowledgement of this fact in the medical literature.
Still, I'm sure these women think they had cancer and were saved by the program.
They are STILL making changes to the program trying to reduce over-treatment, but it's difficult with this sort of subjective test that requires a pathologist to assess the sample. I've read that three pathologists can return three different assessments on the same sample.
If something is so inaccurate, is it acceptable to say, "It's all we have at the moment"...
If that's the case, why not wait until you have something better?
Or, offer it to high risk women with a warning.

Not to start a gender war....but it seems the profession are more comfortable experimenting with women and taking chances with our health.
I've heard that the male pill has been around for years, but never released because they didn't believe enough men would take it and concern about side effects.
There are side effects with almost all medication including the Pill.
Why not release a small amount and see what happens? Why the conservative approach?

No HPV test for men!
That should be given the highest priority. It would enable women to monitor their partners and stay away from infected males.
I can see why that has a low priority...if you haven't been infected with HPV, you don't need to worry about pap smears and cancer and that would never do...
I have to agree, money and politics are behind this testing.

I'm unsure about the cervical vaccine.
I don't understand why all the research, expense and pressure is centred around a rare cancer.
Why not help lots more people and look at lung or prostate cancer?
They kill lots more than cervical cancer. (and always did)

The cervical cancer awareness week we have here is used to create more fear.
We have women saying how much they hate the test, however, it's very important because last time they found abnormal cells...dysplasia!
Dysplasia is as common as dishwater. These women think they have cancer or had cancer and the authorities and organisers are happy to send out that message.
It's dishonest...almost all dysplasia is not cancer and never will be cancer.
It is clearly in someone's interests to make out this is a tidal wave when it's barely a ripple.

I'll try to locate the name of the doctor who disagreed with the release of the pap smear and was courageous enough to say so. His comments will interest many of you.
If this test makes sense, why are these forums so rare...why are people reluctant, even afraid, to criticize this testing...women and doctors alike?
Why is this testing widely considered to be beyond scrutiny?
I suspect even you, Dr Sherman, have been surprised to read some of the facts about this cancer and test. If doctors have been hoodwinked, what hope is there for the rest of us?

Joel Sherman said...

Ruth Mc, I've made no secret of the fact that I have not been aware of the controversy about pap smears. But my professional career as a sub specialist means I've had no need to. More importantly, none of the women I've discussed this with are aware that anything related to pap smears is controversial. That does mean something.
At least in the US, women's health has been a highlighted and emphasized issue for many years, far more so than men's health for instance. Maybe it has become too politicized and become counterproductive.

swf said...

The part that disturbs me is the idea of mandating this vaccine. Yes there is an "opt out" for now for parents to sign, but where is this leading? Give women and girls all of the info....but they need to be the ones to choose.

Indigo said...

How should women handle this high-handed approach by doctors?
If our doctors insist on cancer screening before giving us BCPs or other drugs and cancer screening has risks and should be optional...do we send our doctors a letter setting out our refusal to have any more testing? (except as we see fit)...
I don't like the idea of going to a consult and trying to argue it out...doctors always blind me with facts and make me feel stupid.
If that doesn't work, do we go higher and report them?
If the medical groups know their doctors are doing their own thing, wouldn't they be forced to discipline the doctor if they're using pills and other drugs to force exams and testing on us?
I ask because it seems quite common now for doctors to demand mammograms as well as the full gyn exam and annual smears.
I don't want the gyn exam and would like to make up my own mind how often I have screening.
I want to be satisfied as to risk and to shape screening (if I have it) to reduce the risks.
Having read through this site, I firmly believe most of us are being over-examined, over-screened and over-treated to quote another poster.
If the medical groups won't help, are we forced to go to the media or speak to an attorney?
The women's health action groups seem to favor screening unconditionally.
I haven't been able to find one I think would be receptive.
It seems most of these groups think putting huge sums of money into women's health is a good thing, whether it is or not.
They seem to be more about power than common sense and balanced thinking.
I haven't seen a doctor in 6 years and would like the option of seeing a doctor without the fear it will just turn into another session about my female parts. I'd like to talk about my varicose veins (run in the family)or my sore knee. (old skiing injury)
I can't recall ever seeing a doctor where I could control the consult...it's always gyn and then a quick talk about the very reason I saw the doctor in the first place.
I'm tired of that approach...and I don't feel I'm getting any healthcare at the moment aside from the pharmacist and natural remedies.
If we could set out in writing what we do and don't want in a consult and that was accepted, perhaps, we could safely see a doctor again when we're actually sick or have a sore knee or need advice.
Why can't they make a note on our records, "This patient does not wish to talk about pap smears, pelvic exams or breast exams at every consult...she will raise these matters if she has a concern" and we could even sign this request, if it made the doctor feel better and safer.
Or, even include, "she has been advised of the benefits and risks of testing". (although no doctor has ever mention any risks to me)
I hope for all women, we can make some changes in the near future.
I think everyone is entitled to see a doctor without these things dominating the entire consult every time.

Anonymous said...

I agree that screening has been a "work in progress". The advocates of screening argue they stopped an epidemic. In the UK, we have some very honest doctors. This lady has been mentioned earlier in the thread...AE Raffle.
I don't think this test was put through its paces before its introduction. One of the facts I find interesting is that this cancer was affecting fewer women year by year before they started screening women. After the wild claims came out that heaps of lives have been saved by screening, AE Raffle responded in the BMJ...
Her articles are always honest and thoroughly researched.
You might like to check out her response and the graph which shows incidence rates.
I feel there is a change of climate in the UK with increased calls from high profile people for greater honesty. It should have happened years ago...better late than never. Now the rest of the world needs to understand that all women have a right to make their own decisions about screening and to be provided with all the facts. The "scare campaigns" should be a thing of the past.
Time honesty was put on the screening agenda.
lucy
http://www.bmj.com/cgi/content/full/315/7113
/953

Joel Sherman said...

Here's a reference to a soon to be published article claiming the vaccination for HPV is cost effective in girls, but not for boys. These type studies are based on quality of life indexes.
Frankly I'm always suspicious of cost effectiveness studies because it's possible to include any factors you want to get the results you're looking for.
As cervical cancer is an uncommon disease, it's hard to know how any testing could be cost effective. That doesn't mean vaccination is wrong. There are other considerations. Some claim all we do now prevents an epidemic, which does indeed seem doubtful. If the incidence keeps on falling, maybe no vaccination would be cost effective, similar to what has occurred with smallpox vaccinations.

Anonymous said...

It seems any sum can be spent on cervical cancer, smears, vaccines and other testing like HPV.
It's hard to see this as "good" value for money...but then what price do you put on one life.
When resources are very tight in healthcare though...it is hard to understand why so much money goes into cervical cancer.
My grandfather was a country GP who didn't see or hear of a single case in 47 years.
Mammograms produce more radiation than conventional x-rays...lung cancer kills very large numbers of people, including young people.
I've read there is no point screening for lung cancer.
If you can justify mammograms for breast cancer, why can't they justify screening for lung cancer?...even if you initially confined screening to smokers, people exposed to asbestos and people with family history.
That would be better value for money and save more lives.
Maybe diagnosis wouldn't change a patient's outcome...but surely catching lung cancer early would give you a better chance of survival.
I don't understand why we spend so much money on a rare cancer and find reasons why screening would not work for very common cancers.
I doubt set-up costs would be more than a breast screening facility.
Certainly more lives would be saved.
I think the obsession with cervical cancer has diverted much needed resources from far more important areas.

Anonymous said...

"In the surgery, we're surrounded by brochures on HPV testing, Liquid Pap tests, vaccines...we'll need to be given a showbag shortly so we can carry them home." Quote by Ruth Mc

Ruth, all of this costs a lot of money.
In 2003 the most common cancers were...
Prostate 26.3% (13,526 cases)
Colorectal 13.5% (12,536)
Breast 12.8% (11,889)
Melanoma 10.8% (9,524)
Lung 10.3% (8,249)
Many other cancers fill the spaces below and then:
Cervix 0.8% (725)
Testes 0.7% (638)

There is currently no approved screening test for melanoma, the
4th most common cancer in Australia.

It's said that a lack of evidence that screening would save lives is the reason, however that was also the case for breast and cervical cancer screening when those programs were introduced.

Until very recently, there was no formal screening program for bowel cancer. (the No 2 cancer)Some people had screening colonoscopies, others didn't and that is still the case. I think the current recommendation is a screening colonoscopy every 3-5 years if you have family history.

In the last 2 years, the Government has allocated $7.2 million to improve knowledge of bowel cancer and to commence screening FOBTs in a smallish group ie. those who turned 50 in 2008 and those who turned 55 and 60.
This program may be extended in the future.

Cervical cancer is not listed in the top 10 killer cancers and was responsible for 725 cases.
Testicular cancer - 638 cases.

There is no approved screening test for testicular cancer.

Funds spent on cervical cancer.

$90M for screening per annum plus
$436M for Gardasil vaccine for 4 year period then $50M for every year to follow plus costs of administering the injections.
Plus millions every year for incentive payments to doctors for screening.
Plus the cost of colposcopy assessments.

Between 1972 and 2000 it's claimed that 2000 deaths were prevented by screening...although the formal screening program only occurred in the 1990's.
These figures are controversial, as they don't take into account other factors that may have in part accounted for the reduction in the death rate.

Add up the total cost of the fight against cervical cancer and divide that between the number of lives claimed to have been saved by screening.
Quite a success story for powerful gender and defensive lobby groups.
Prostate cancer - the DRE exam was never part of a screening program. Men were examined opportunistically. In the last 2 years the PSA blood test has become available, but there is no formal program for screening.
Men are once again screened opportunistically.
Papscreen and BreastScreen are the only bodies set up to co-ordinate and encourage screening.

In the meanwhile, skin, prostate and bowel cancer will continue to take lives even though screening tests could be immediately implemented, formalized or/and extended. (FOBT)
Steve
http://www.aihw.gov.au/publications/can/ca06
/ca06.pdf

Anonymous said...

Two things omitted from my previous post.
The Government has decided not to allocate $70M per annum for ThinPrep smears and another huge sum for HPV tests.
There is pressure on the government from certain groups to fund these additional measures.
Steve

Joel Sherman said...

Thanks Steve. I assume your statistics are for Australia. The numbers would be much higher and the order somewhat changed for the US.
But the basic message is the same; a huge amount of money is spent on cervical cancer when compared to other uncommon cancers.
The reasons for this can be debated. Cervical cancer was once more common than now so some of the spending is just left over from a different era. Also all women's health issues come with an aura of political correctness. Being against a women's health initiative is like being against motherhood. But spending on diseases that are no longer very important should be diminishing, not increasing. Good examples are smallpox and TB.

Joel Sherman said...

Kate W said: In Australia, a high number of women will have colposcopy and biopsies, almost all for false positives and things that wouldn't have become cancerous.
I think the figure is around 80%...
Surely that fact alone compels doctors to give us this information.


As I may have said before, I don't see why this is handled any differently than prostate screening where there has now been substantial publicity about the positive biopsies that may never lead to invasive cancer but can lead to harm from unneeded radiation and surgery. There have been many recent studies showing this, resulting in the recommendation that men be given a choice. Prostate cancer is much more common than cervical cancer, and a bigger threat. Cervical cancer is uncommon and the potential for needless tests much greater. I fully agree that all the pertinent facts on cervical cancer should be explained to women and let them make the choice.

Confused by Doctors said...

Dr Sherman, as an experienced doctor, can you understand or explain why cervical and breast cancer screening is handled in this way?
It is almost demanded of us and the inference is, we are fools, if we refuse or even ask questions.
It does seem disrespectful, unfair, unacceptable...all of the words that have been used by other contributors.
Even newspaper articles use phrases like, "women are still not presenting for pap smears"..."ignorance keeps women from having mammograms"...
The impression is always that NOT having screening is an irrational and uneducated thing to do...they often say ethnic minorities and low income women are the ones not being screened implying they don't know any better because they don't speak English or are uneducated.
As an educated woman, I'm unsatisfied with the "demanding" of my attendance for screening and won't accept that sort of treatment. I'm not a robot or obedient puppy.
I resent the inference I'm somehow irrational or foolish for refusing until I'm satisfied...
Why is my Doctor offended I need answers before I agree to screening?
I get, "you SHOULD be having pap smears"...I feel like I'm back in school and not a 31 year old accountant.

How much longer? said...

We often hear of new things...
Alternatives to the pap smear and then nothing becomes available.
I've heard of the CSA blood test, Bioprobe, Fournier Self-Sampling,
Tampap and Spectrx's SPRX cervical cancer light test.
I don't think any of them are currently available.

Why is it taking so long to find a non-invasive and accurate test?

I've read the SPRX will spare lots of women from having biopsies for false positives. There will be no need for a painful biopsy...a light is directed at the cervix and information obtained that identifies benign or cancerous tissue.
It would be a huge improvement on the colposcopy and biopsies.

Many women won't have pap smears or not regularly, they're too invasive, uncomfortable and for many, very painful.
I like to do a search every now and then to see if anything new is on the horizon.
Doctor, you mentioned prostate screening and the PSA blood test.
They're looking at adding another blood test to the PSA which will increase it's reliability and reduce the number of false positives.
These things seem to happen quickly for men, yet we're left with horribly invasive and unacceptable tests for years on end, with no improvements at all except more invasive testing. (HPV test)

I don't begrudge men a non-invasive test, just wish we weren't still waiting.
I read that the colposcope business is worth one billion dollars a year.
That makes me nervous and worried that vested interests might try to block non-invasive developments...this screening and biopsies are worth a lot of money to the profession.
I've attached the pieces I found on the new prostate cancer blood test and the cervical cancer light test.

http://biomedreports.com/articles/most-popular/12449-non-invasive-device-for-cervical-cancer-detection-guided-therapeutics-otcgthp.html
Prostate blood test:
http://www.dana-farber.org/abo/news/press/2009/new-blood-test-greatly-reduces-false-positives-in-prostate-cancer-screening.html

I've really enjoyed taking down all the references posted on this blog. Saves a lot of time!
Thanks everyone...I too share your frustrations and concerns.

Joel Sherman said...

I apologize for taking a long time to respond to many of the posts, but I actually try to read all the references and I have to get some from the library.

I think all screening tests have come out heavily promoted. If it's a commercial test, the company does this as was done for Gardasil. Almost always, the long term benefits of screening are not known when a test becomes available. It is only recently that screening tests have been routinely subjected to long term follow up.

Indigo: The women's health action groups seem to favor screening unconditionally. This is a problem in all fields as real money becomes available from federal grants. Women's health initiatives are big business.

But this comment of Ruth Mc I have to disagree with:
Not to start a gender war....but it seems the profession are more comfortable experimenting with women and taking chances with our health.
Doctors are frequently accused of just the opposite, doing all their research on men and ignoring women. Historically that is true but nowadays large studies try to include equal numbers of men and women. But it remains more difficult and costly to do research on young women because of concerns re pregnancy and the fetus.

Anonymous said...

"It is almost demanded of us and the inference is, we are fools, if we refuse or even ask questions.
It does seem disrespectful, unfair, unacceptable...all of the words that have been used by other contributors.
Even newspaper articles use phrases like, "women are still not presenting for pap smears"..."ignorance keeps women from having mammograms"...
The impression is always that NOT having screening is an irrational and uneducated thing to do."


I completely agree and wanted to share something that I think goes along with what you are saying. We women are bombarded with that message from everywhere and the women's magazines are some of the worst when it comes to this issue. Just this morning I picked up a copy of the new Nov. issue of Self magazine. In it there is an article which ranks the healthiest cities for women in America. The fourth city on the list, Cambridge, MA, which appears on page 102, is deemed a "health care heaven" and is given this glowing, pro-gyn exam description:

"The smart cookies in this metro area (which includes Framingham and Newton) can choose from 90 percent more ob/gyns and internists than is typical. And they are among the most vigilant about getting Pap smears, mammograms, breast exams and checkups."

I may be reaching a bit, but to this reader, the underlying message seems to be any woman who does not do exactly what the women of Cambridge do is an unhealthy, uneducated, foolish person.

Beth C-H said...

I think the underlying message is always the same when it comes to cancer screening and women.
There really is no choice...if you don't screen or don't screen according to the recommendations, you're an ignorant person taking extreme risks with your health.
There is an arrogance in this area that doesn't seem to be elsewhere in the profession - rational thought processes don't seem to exist. Negative information MUST be wrong and positive MUST be right.

I strongly object to the screening "information" brochures that present one side of screening...the positive side.
How can this be anything other than dishonest?

The Nordic Cochrane Centre in Denmark have issued their own information sheet for women after continually asking the government to force the screening authorities to be honest with women.
Even when they rewrote the brochures, they were still inadequate.

The screening authorities will never produce an honest assessment of the risks and benefits of testing, because the bottom line for them, is getting women in the door and a reduction in the death rate.
Perhaps, initially it was well-intentioned although always inappropriate... to keep concealing information and misleading women at this stage is just bloody mindedness.
I say, take it out of their hands!
Thanks to the NCC, women can now access balanced information at:

http://www.screening.dk/folder_uk.pdf

Good luck ladies, we're in this together!

Joel Sherman said...

I think it is pertinent to add that the link given by Beth C-H concerns mammography screening not cervical cancer screening.
Again it's worth emphasizing that inherent in all screening tests is a risk/benefit ratio. My wife confirms that the mammography pamphlets she has seen never list the negative aspects. Pap smears are so ingrained in US culture that she's never even seen a pamphlet on that.

Joel Sherman said...

From several days ago, 'confused by doctors' said: Dr Sherman, as an experienced doctor, can you understand or explain why cervical and breast cancer screening is handled in this way?
It is almost demanded of us and the inference is, we are fools, if we refuse or even ask questions.


No I really can't, but I have some ideas. When pap smears were popularized near 50 years ago, they were thought to be of great benefit and apparently the incidence of cancer did decrease. The risk factors were poorly understood in the beginning so there were no other preventative measures known. The modern knowledge of risk factors can now be factored in to determining any given women's actual risk. Clearly many women are at very low risk and likely do not benefit from screening. Breast cancer screening is a different issue.
Don't know why the process of incorporating risk factors into the screening recommendations is so slow to take hold. I personally believe that women's health is now such a big industry with so many vested interests that there is great resistance to a course change.

Anonymous said...

I've heard many American women are afraid to move away from annual cervical screening.
Some doctors are now satisfied with 2 or 3 yearly testing if you've had three negative smears and are 30 or older.
I've heard that most doctors have totally disregarded this change anyway...
Also, women are now so afraid of this cancer after all the stern warnings over the years, "don't miss your annual pap smear and pelvic"...some will continue to insist on annual screening, even if it increases the risk of biopsies and provides no benefit at all.
I've heard women say, "what if bad cells start growing just after my last smear and I wait 3 years for another smear!"...
When you've been frightening women for years and conditioned them into thinking your way, you can't just change the rules.
Cry Wolf

Anonymous said...

Now they say they'll probably triage women with abnormal pap smears...if you have HPV, you may be handled differently.
I don't think any woman getting an abnormal result will be happy to wait.
There is so much wrong with this testing.
I've never bought the hype about this cancer. I went to the library and looked at the stats...tiny, I can live with that...the risk of catching almost every other cancer is higher and I don't have frequent testing for them...they're never mentioned to me.
A look at the risk factors...and I'm very low risk for a rare cancer...all I need to know to make my decision.
The fear of this cancer is caused by women not understanding or knowing the facts. I'm amazed that even very intelligent women have been totally misled as to the risk of getting this cancer and the value of this test for many women.

There was a bit in the Guardian by a woman with mental health problems saying she'll never have another smear after a bad experience...the response was huge.
It seems many women have been totally convinced this is the most important life-saving test in the world. They get very upset if women say they won't be having them in the future or at all.
If they only knew...stop listening to the doctors and get on-line...you don't even need to go to the library these days.
It's all right here in his blog!
If women are high risk, then with the facts, they can screen as appropriate.
I still say though...if a woman finds this test really upsetting, painful or whatever, then she should be free to walk away and get on with her life. Not driven out of town with doctors and women wielding sticks at them and shouting insults.
Some women seem disgusted that she should mention her negative experience..."it's irresponsible"...are we all to pretend? Why?
I think it's really bad that women are torn to pieces...with vitriolic responses, if they even mention their bad experiences. Heaven forbid they mention a negative, you might scare someone and put them off screening.
Why shouldn't we hear all of it?
Aren't they saying better to stay silent and live in a censored way on this topic?
Once again, why?
I think far too much is made of all of this...
I think the comment made in this blog about smoking is right...a much greater risk to your health.
Get some perspective on the agenda...why is this such an emotionally charged topic?
I just don't get it...

http://www.guardian.co.uk/
society/joepublic/2009/
apr/17/smear-tests-
mental-health?
showallcomments=true

Deb said...

We ARE "censored" on this topic...except on a doctor's blog, amazingly!!!
Huge respect for being one of the rare individuals (let alone doctor!) who can still look at this topic with an open mind and discuss it dispassionately.
I think the comments directed at Clare (article in the Guardian) shows why most women stay silent on screening.
Any bad feelings we have are hysterical, silly, immature, irresponsible or unreasonable... get over it, and carry on, keep it to yourself, don't complain and certainly keep having smears.
Don't worry about pain, bleeding, humiliation...none of those things are valid when it comes to "life saving" pap smears.
I was surprised to find this blog. I'm amazed you haven't been silenced for being so "irresponsible"...how dare you cite medical journals? They should be thrown in the rubbish bin unless of course, they talk in glowing terms about the pap smear.
Don't you know the rules?

Many people turn their heads away from even well written research papers by very senior doctors, experts in the field...they refuse to see or consider anything that might caste doubt on the value of this testing.
They turn away, rather than learning and understanding - they seem to accept that anyone who has anything negative to say, is wrong and they should not be "permitted" to publish such "irresponsible" material.

That is a common attitude as reflected in the comments to that very valid and reasonable piece written by Clare...she is simply talking about "her" experience. Why should that outrage anyone?

It seems the "facts" that have been created for this cancer are now actually the facts.
Fiction is now fact...
It's like the pathological liar who actually starts believing his/her own lies and can beat a lie detector test.
This is the ultimate success of any imprinting, conditioning, propoganda or brain-washing campaign...absolute obedience and total acceptance without question.

BJN said...

Thanks Anon...
One of the things I noticed is the large number of replies that have been deleted by the moderator.
I guess too nasty to be printed...
Poor woman, I doubt she'll say anything bad about paps in the future.

Anonymous said...

This is the most disappointing thing about us females.
We don't support each other.
This is only one example...we have issues with women doing what they decide is right for them.
We attack women who are working mothers, we attack childfree women, we attack stay-at-home mothers.
Why can't we live and let live?
I doubt very much if a man were to write a similar article about prostate cancer testing that he'd provoke such nastiness and judgemental comments.
People grabbing the moral high ground.
It's the saddest part of being female...other women are always the first to line up to judge and verbally bash us.
I understand, Clare...here is one female who firmly believes we are free to live the life of our choosing in all areas.
It's ridiculous to make out screening is a law or has no down side.
Liesel

Joel Sherman said...

The second vaccine against cervical cancer has been approved in the US, Cervarix. It's not identical to Gardasil, but I don't know how similar it will be in usage.
It is recommended for girls and women ages 10-25. No mention of use in men.

Joel Sherman said...

I can't help but be amused by this link advertising a UK campaign to get girls more aware of cervical cancer screening and vaccination. They're invited to have their photo taken on a catwalk. There's nothing wrong with this, but
compare it with the dearth of publicity given testicular cancer which has an incidence only slightly less than cervical cancer. Can anyone imagine a campaign inviting boys to get their picture taken to fight testicular cancer? It's really hard to know why one disease gets publicized ad nauseam and the other is ignored. Any further ideas ladies?

Sienna, Melbourne said...

Dr Sherman,
I know you've said that you're not an expert in women's health but at this point I think you'd know more than many doctors because you can actually admit there are negatives with this testing and even said the test should be optional.
Like others, I feel angry we're silenced on this topic and so manipulated by the system. My doctor knows how I feel...
I've said it's not up for discussion anymore, because it's not possible to discuss something with a brick wall. That's how I feel...no one listens or LOOKS AT THE FACTS. I don't want to be treated like a fool and I don't want to hear the catchwords from the latest Papscreen commercial.
If you plan on insulting my intelligence, we'll agree to disagree...but I feel a responsibility for the teenage girl who walks into the consult room after me, totally unaware there is a downside that may have a impact on her healthy young body. I feel morally obliged to do something...

I've drafted a letter to an investigative journalist who tackles the hard and controversial stories...she won't be afraid of the backlash and she's smart enough to look through the fluff and sparkle.

I really found the figures by Andrew Rouse helpful...is it possible to find out how this man, an academic in public health, put together those figures?
The Australian Government are reviewing screening tests aimed at women at the moment.
I'm afraid nothing will change...
Australian women more and more are waking up that 2 yearly screening is unnecessary (only 60%participate) and so is screening very young women.
Also, we should have a choice regardless of risk. We live in a free country and the risk of this cancer is very low.

I had planned to contact Mr Rouse, but wondered whether you found the article that related to the figures in the letter he sent to the english medical journal (BMJ). I've searched his name, but have been unable to find the original source for those powerful figures.
Women really need this information.

Thank you for a great forum...the others are right, this is a special and rare meeting place.

I've also written to the Nordic Cochrane Institute about pap smears. The breast cancer leaflet is what we should have received from our doctors, not the pathetic whitewashed version my mother received...

Catwalk parades to promote vaccinations!
BUT, they still expect women to have regular pap smears.
They continue to ADD to the system, not take away...an accurate blood test would be a massive improvement.
We don't need more and more tests and injections to protect us from this rare cancer.
When I look at the stats on other cancers, it makes no sense at all.
We need rational thinking and some balance, not to mention fiscal sense and responsibility when they're spending taxpayers money.
Our public hospitals are in crisis mode, public nursing homes are underfunded, there are long waiting lists for surgery, carers need more help and psychiatric services are in serious need of funds etc - the need is MUCH greater elsewhere and the funds would save many more lives.
Why does anything to do with THIS cancer get straight to the top of the list?
How can we justify spending vast sums on this rare cancer?
They say screening has kept the epidemic at bay.
My reading doesn't back that up at all.
In fact, it seems the number of women actually saved by this test is very small.
Where is the catwalk for other cancers that kill far more people? Why is it ALWAYS cervical cancer?
I have no idea why this cancer is almost the pin-up disease of the century.

Joel Sherman said...

Sienna,
Thanks for your kind comments.
I will see if I can find more background on Dr Rouse's comments.
It will have to wait a few days as I'm not home now.

Joel Sherman said...

A brief news announcement: Merck has been granted approval to market Gardasil to prevent genital warts in men. The article doesn't say anything about a broader possible indication, that of greatly reducing the spread of HPV thereby greatly lowering the risk of cervical cancer.

Joel Sherman said...

There certainly is a wealth or information on these topics.
Here is an excellent summary from JAMA on the risks and benefits of vaccines against HPV.
I recommend it to anyone with an interest in this subject.

HR said...

This is interesting reading...though I do think you should be meeting in a forest at midnight with a guard stationed at every second tree!
This sort of talk usually ends when someone posts,
"This is outrageous, I've had cervical cancer four times and a smear saved me every time"...

Some people don't understand that individual choice is a factor.
I could post that my Uncle had prostate cancer and was saved by a test...that doesn't change a man's right to choose.
I don't need to be "protected" from the truth either...

One question that has bothered me and I haven't been able to find the answer.

Does anyone know whether there is a blood test that tests for HPV?

If you test negative, does that mean you've never been exposed or only that you don't have an active strain in your system?
If the former is true, they'd be no need for pap smears.
I assume it's not as easy as that...

I was involved with someone from age 19 and we lost our virginity to each other. I know he was faithful to me.
I ended the relationship after many years.
I know my risk of this cancer is tiny and haven't bothered with smears.

All of this cervical cancer talk, really puts me off having another relationship.
I can stay single, healthy and happy or start a relationship and feel so afraid that my risk just went through the roof, that I follow my friends into screening.

Losing your intimate privacy on a regular and routine basis, abnormal results, moving down to colposcopy, LOOP and other procedures add on pain, bleeding, discharges, floods of tears and all the other human emotion.

It's an ugly, ugly, ugly world and I don't want to be part of it.
It's not an exaggeration either.
I'm 35 and many of my friends who have screening, have had at least one procedure for "bad cells".
I doubt bad cells equals cervical cancer...yet some of my friends think and say they had cancer.

I doubt this very much...many women are confused about the whole business.
One friend thought smears cleared her of all risk of ovarian and uterine cancer as well as cervical.
One friend has always refused to have smears, she's like a criminal on the run and that's the way she's made to feel by everyone. (not me)
She's had three sexual partners, (who always used condoms) it's possible she's been exposed to HPV.
I say she's low risk, others say she's facing a death sentence without screening.
It's a pressure in her life. (I'd say unreasonable pressure)

I envy past generations to some degree.
My female ancestors lived happy and long lives, without a seconds worry about cervical cancer.
What would they make of all of this?

Imagine it, I'd choose to remain single than put myself through all that...
Why should that surprise anyone?

Any new man would have to be a virgin and what are the chances in your 30's AND, I can't even ask him to get tested for HPV.
I read here there is no test for males!
That means...a virgin or staying single are the only ways of avoiding the screening life.
I really don't want to live in fear, which is what many women do when they don't have pap smears.

My great-aunt told me once, I was part of the lucky generation.
I could go to University, work, choose to have or not have children...all the choices in life.
YET, I feel all of this high pressure intimate medical control and interference in our lives offends our individual rights.
I feel we have lost autonomy and all of this intimate probing and processing takes away basic human dignity and some of the pleasure of life.
Someone might come on after me and say having treatment for cervical cancer would take away the pleasure of life...but our grandmother's didn't think THAT way...we think that way because of all the pressure, misinformation and fear.
In those days, someone just died of cancer...poor, unlucky woman.

I could never write this on any other forum or I'd be strung up...thanks for letting me speak.
Off to look for my 30-something virgin - wish me luck!

Joel Sherman said...

HR, I'm not an expert in these issues, but I'm aware of no blood tests for HPV. The potentially more accurate DNA test also involves a cervical scrapping.
But if you've read this blog you'll know that the risk of getting cervical cancer is very small unless you're at very high risk, which it doesn't sound like you are. This is true even if you're infected with HPV.

Anonymous said...

I too share your frustrations, HR.

I am bothered by how much attention is given to this particular form of cancer when it is so rare. It makes me angry how so many of us (women) are annually subjected to the hysteria, pressure, scare tactics, shaming, etc. over a disease that is not common. Don't get me wrong, I think all cancers are horrible, but I don't get why there is so much emphasis on this particular (and quite rare) form of it from our healthcare providers. I don't get why so many of our women friends/colleagues/counterparts are so insistent on this yearly testing and so quick to crucify those of us who question it.

My mother died of glioblastoma multiforme (stage IV brain cancer) one of the worst forms of cancer anyone could get. According to this site, http://www.irsa.org/glioblastoma.html, 13,000 Americans die every year from malignant brain tumors. Yet, I don't see doctors routinely pressuring or advising patients to have their brains scanned every year. I don't see magazine articles trumpeting the positives of having yearly brain scans. You never hear TV reporters discussing the benefits of having one's brain scanned. When my mother was diagnosed, we were told by her doctors that they just don't know what causes the disease and that it is exceedingly rare. It would appear, from the facts and figures, that cervical cancer is even less common than brain cancer.

Susanne

Tania, Australia said...

Susanne,
It is...brain cancer is around 1% and cervical (depending on the country) is somewhere between 0.69% (States) and 0.35 (Australia)

I have a question too.
In "The Blog That Ate Manhatten".
I know the blogger is a gynaecologist and likely to recommend anything good for business.
One poster, "Elizabeth" caught my eye, she's made a decision not to have smears.
Elizabeth sounds like an educated woman. She makes out her case clearly and has done lots of research.
We now know some facts. (if we've been following this thread)
Her arguments are sound and the Dr would know that...or, should know that.
The Dr admits that she has a reasonable chance of being alright and then says...
"women who avoid screening are playing a "game of chance" and that's not something I'd do with my or my patient's health".

There is always something vaguely schoolmaster'ish and schoolgirl about our dealings with doctors.
It comes out loud and clear with cancer screening and in that doctor's tone.

My father was recently offered prostate screening. There is no prostate cancer in Dad's family and he doesn't believe in "doctor's messing about with him". (when he's not sick)
My father didn't present a well researched case for his doctor. (like Elizabeth)
Dad's doctor accepted his decision and hasn't raised it since.
Yet prostate cancer is heaps more common than cervical cancer.

My doctor pressures me and seems shocked at my doubts about screening. Her reaction was extreme... like I planned to jump in front of a train or set fire to myself.

I loathe hospitals and wouldn't handle a colposcopy and biopsy well at all. I'm also a very private and shy person.

If all women were unscreened, around 1% of women would die from this cancer.
These women would have risk factors.
I've read that about 0.65% of women are saved by this test and that 0.35% get false negatives and are not helped by the test.

That leaves 99% of women who are not helped at all and 99.35% if you include the women who get false negatives.
I then read that 78% of Australian and 95% of American women are referred for colposcopy and biopsies at some stage.
Only a few will have cancer.

1% get cancer with no screening and yet 78% of our screened women have biopsies or treatment for abnormal smears.

Is there something unclear about those figures?

Why would any healthy woman with no or few risk factors accept that sort of risk?
It's hardly a game of chance on those figures.

Now you can argue about the figures and tweak them here and there, but the huge disparity in cancer rates and colposcopy rates can't be denied.

Why then would doctors make us feel like wicked schoolgirls for choosing not to screen?
They must know these facts.

Why do they take so lightly putting us all through invasive exams and biopsies.
A friend had a biopsy last year and was a mess. I know what it involves and it's not something I would ever want to have - her tears really upset me.

She said it was degrading, frightening and embarrassing.
I heard about the dentist's chair, having a painful injection in her cervix, feeling the heat during the treatment and feeling unwell and faint.
Later she had bleeding and pain. She was knocked around by this procedure and she's a strong person. She also hated having a male doctor.
Other women have even more involved treatment. A family friend had to be hospitalized for the day and knocked out.
I know a few women who've had treatment and none have had cancer. I think doctors prefer to burn off cells and conceal over-treatment - nothing to go to pathology that way.
You can't get away from the facts though.

How could any humane person think it reasonable to put so many women through something as bad as that? It makes me very angry!
We do this to 78% of women to catch 0.65% of women. (95% in America)
I find it hard to find the right words.
It makes me want to cry...I think it's cruel...
If doctors really think this is a good idea, then I want nothing to do with them.

Joel Sherman said...

I feel compelled to say that I doubt that 95% of American women have had a cervical biopsy or colposcopy. I haven't seen actual statistics for that. If anyone has documentation for the frequency of cervical biopsies please post it.

Steve said...

I've read that also...anything from 77% to 95%.
It's a high figure whether you take the lower or higher estimate.
The more often you screen, the higher the risk of colposcopy.
US women have a lot more pap smears than women from other countries and this is reflected in your colposcopy rates.
The R. De May article in the American Journal of Clinical Pathology was attached to a post some time ago.
(or, did I see it elsewhere?)
I bookmarked it anyway and have included the link for your reference. He mentions high colposcopy rates.
I know the 77%-78% figure is right for Aussie women. I've seen it in a few papers.
That figure has never been released to women and isn't generally known. I've never seen it mentioned in the media or in the Papscreen leaflets.
Laura Koutsky published a paper mentioning the 77% figure.
This figure seems to have been accepted by the profession and is often cited in other research papers on the subject.
I think it's a figure that should be released to women.

Laura Koutsky's article was published in 2004 and this research includes the 77% figure.
She says the US figure is "at least as high".
The DeMay article puts it higher than that and so does a few other research papers I've read over the years. I'll post them, if I can find them.
Our rates are the end result of biannual screening from a year or two after the initiation of sexual activity. (usually around 18-20 years)
Hope this helps.
Koutsky:
http://www.nypcancerprevention.
com/issue/4pro/pro_spot/cer_can.shtml
DeMay:
http://ajcp.ascpjournals.org
/content/supplements/114/
Suppl_1/S48.full.pdf+
html?sid=fb361d0c-ca1e
-432b-a6dc-2c23cc95e16d

Joel Sherman said...

Thanks Steve. I couldn't get your first reference to work, but the second reference is excellent. It comes from the American Society for Clinical Pathology journal. Pathologists benefit financially from pap smears.
The figure of 95% of women will get a false positive result in their lifetime comes from extrapolating a 5% false positive rate per test factored over a lifetime of pap smears done every 3 years. I personally don't know any women who've had a false positive test, but it's likely that most women don't talk about this to men besides their husbands or close family. The name of the article is Should We Abandon Pap Smears. It's well worth reading.

Steve said...

Annual testing usually produces the highest colposcopy rates.
Germany must have high rates as well with their annual screening policy.
In the article by Koutsky, she talks about a 15 year old Australian girl having a 77% chance of a colposcopy in her lifetime. Now that would be factoring in our 2 yearly program.

I saw an article recently that said the majority of US women are still being over-screened with annual smears and it might be difficult to break this habit. (for doctors and some women)

Given the majority of US women have screening annually some into old age and many doctors apparently include virgins from age 21...your rate must be higher than the Australian and German rate. I was surprised to read that 20% of US women in their 80's are still being screened. Most programs end at 60 or 70.
I think it's very likely the recommended screening interval in this country will move to 3 yearly before too much longer.
A review is currently taking place...
I'll link the Koutsky article again...
http://www.nypcancerprevention
.com/issue/4/pro/pro_spot/cer_can.shtml
(Laura Koutsky)

http://louisville.edu/medschool
/behavioraloncology/
presentations/perceived-
cervical-cancer-risk-
among-women-undergoing-colposcopy.html
(women over-estimate the risk of cervical cancer - some of the posters have mentioned that women have been led to believe the threat of this cancer is much greater than it actually is...this may be of interest to them)

http://www.springerlink.com/
content/rw33577571673852/
(attempting to move away from annual screening for US women)

Anonymous said...

Interesting article that appeared on abcnews.com. It seems the top doc at the American Cancer Society has ruffled some feathers by saying the benefits of some cancer screening methods have been overstated.

http://abcnews.go.com/WN/CancerPreventionAndTreatment/breast-prostate-cancer-screening-criticism-stirs-debate/story?id=8881664#

Thoughts, anyone?

Joel Sherman said...

Yes I was going to post similar links. Here's one about breast cancer from the National Cancer Institute.
There was an article yesterday on breast and prostate over screening on the Wall Street Journal blog. You can see my comment under 'JS MD'. My question is why do they restrict the discussion to breast and prostate when over screening appears to be a far worse problem for cervical screening.

Deborah LB said...

Dr, Thank you so much for making that comment.
It seems almost all doctors are terribly afraid to say anything against cervical screening.
I have always believed the amount of anxiety about this cancer and the trust in this test is misplaced.
People look over the facts, around the facts or refuse to see them.

I really object to the "messages" we continually receive about cervical cancer.
I'm sure most of you will be aware of Cervical Cancer Awareness Month - yes, cervical cancer gets a month of awareness!
The sort of interview attached is unfair - it continues to whip up concerns about this cancer.
I accept a woman here and there is saved by this test, but...how is it helpful to interview these women "to raise awareness"?
Awareness has reached saturation point and I think the "messages" are misleading.
These interviews never include information on the woman's risk (for privacy reasons) and NEVER mention the absolute risk of this cancer.

Why don't they interview a man with testicular cancer and have an awareness month?
Or, to present a balanced view, why not interview one of the huge number of women disadvantaged by this test? The women who get a false negative result and a much later diagnosis...or women left with damage to the cervix that can cause all sorts of issues in your life or, the women that become depressed or have sexual problems after biopsies.
I could give them the names of lots of women including (sadly) my younger sister.
Why don't we ever hear from any of them - there are huge numbers.
No, they always find a woman out of the small number who get this cancer, to "push home the message and raise awareness".
It happens around the world.

Look at discussion about prostate and breast cancer screening...we're talking with more honesty, although talk about mammograms took a fair while, but thank goodness, is now out and being discussed...
Cervical cancer - nothing, almost no critical discussion anywhere.
There may be some in medical journals, but...how many women would even think to look further? (apart from other factors - understand what they were reading, have access to a computer and so on)
The message is everywhere and rock solid - VERY important and life-saving test.
There is finally some discussion in the UK, about 25 years too late!

The threat of this cancer in the minds of most women is huge...the reality is that even a very high risk woman is VERY unlucky to get cervical cancer.

I think if all the millions that go into this screening had been spent on treatment methods...survival rates would be even higher and we wouldn't have the vast amounts of damage caused by this testing.

Is a cervical cancer awareness YEAR just around the corner...sponsored by one of the large pharmaceutical companies or a group of gynecologists? (of course)
Thank you Dr, for your lone voice...what do they say, every tidal wave starts with a ripple.

http://abcnews.go.com/video/playerIndex?id=6646449

Deborah said...

Deborah again...
Dr, I just wanted to warn you that doctors often say it is almost impossible to classify women as high or low risk...unless you're a virgin or both virgins when you enter a sexual relationship.
My partner had two long-term relationships before I met him.

My doctor told me that I was high risk because she had to assume that one of the previous partners of my husband might have had 500 sexual partners...so my husband is likely to have HPV and passed it on to me.
She said my risk is as high as a prostitute, because of the "uncertainty" surrounding my husband's sexual history.
My husband was quite offended by this and concerned...he knew his first GF was a virgin, he contacted the other one and she'd had one previous partner.

My Dr still argued high risk because the one partner, the old GF had had, may have slept with 500 men.
The argument goes around and around...
Only a very few women could satisfy the "sexual certainty" rule.
I was satisfied after looking at the rareness of this cancer, to have some faith in my body and use my common sense.
It is very difficult though, because the warnings and pressure are constant.
This UK paper features a report from 2000 were this very question was raised...the inference made by one of the Doctors was that Finland had tried to confine testing to high risk women only, but it hadn't been accepted by women.
They must have been offended by the link between high risk and promiscuity.
I think when a cancer is rare and THEY say they can't identify high risk groups AND the test leads to biopsies for false positives all the time...it means it's an unsuitable screening test.
(unless women ask for it knowing all the facts)
If we see a news item about lung cancer, ho hum...yet it kills lots of people.
If we hear about a woman and cervical cancer, it has a huge significance and causes lots of worry.
I blame the way doctors have pushed this test so forcefully and unfairly...that's why our reactions don't make sense, women always over-react.
I'd really appreciate your opinion though...does this "sexual certainty" rule make sense to you?
My doctor says once you lose sexual information certainty, you're high risk.
She also believes all women should assume their partners have had other sexual partners, just to be on the safe side.
Basically, unless you're a virgin...you must have regular testing, to be on the safe side.
Surely the risk of colposcopy needs to be factored in...I don't want to have "treatment" to be on the safe side.

http://www.independent.co.uk/life-style/health-and-families/health-news/is-cervical-cancer-really-a-big-threat-to-women-or-just-a-big-scare-724020.html

Joel Sherman said...

Thanks for the warning Deborah. You stimulated me to double check my present understanding of cervical cancer screening by going to UpToDate, a US based widely recognized medical database updated every few months containing the most current recommendations and guidelines.
I said on the WSJ blog that the risk of cervical cancer approaches zero for monogamous women with prior negative paps. I think that statement is basically correct, but should be expanded to specify 3 negative paps. Also importantly, not only the woman needs to be monogamous (or abstinent), but her partner as well. There is a Canadian article (Coldman, J Med Screen 2005;12:7–11) that claims that negative paps did not diminish the future risk of cervical cancer, but the study was retrospective and had no data on sexual histories. Thus they lumped abstinent women with women who had many ongoing and changing partners. Given the very low incidence of cervical cancer, I don't think the study has any relevance to clearly low risk women.
Other facts that are presented include many that have been already cited on this blog.
Recommendations are given by 3 societies in the US, American Cancer Society, American College of OB-Gyne, and the USPSTF (US Preventative Services Task Force). They don't fully agree.
Initial screening: Age 21 or 3 years after the start of sexual activity, which ever comes first.
Discontinuing screening: Much more disagreement. With 3 negative pap smears screening may be discontinued at age 65 or 70 in low risk women.
Risks of screening: 55-60 million cervical cytology tests are performed annually in the US. Approximately 3.5 million are read as abnormal for a rate of 5-6%. 2.5 million women undergo colposcopy as a result. I don't know how many cases of invasive cancer were prevented by these tests, but given the annual incidence of cancer of 11000 cases, it must be vanishingly small.
Clearly most of the information that has been cited on this blog is correct. Once again I recommend only that women should be screened proportionately to their individual risk. And in general I agree that given the low incidence of the disease informed consent must be made part of the process. There is no justification in trying to shame or force all women into screening given the very poor risk benefit ratio.

Joel Sherman said...

A further comment Deborah. The fact that your partner has had prior partners doesn't mean much if over several testing cycles he has not passed anything on to you. I should think you were both low risk for HPV. Of course you can get that tested nowadays and settle the question with a DNA test, though I believe it can't be done on men.
Once again, I'm not an expert in the field. I think it likely that there is little data one way or the other as to how much risk your husband presents to your acquiring HPV. But almost certainly, if you have had a long term relationship and you've repeatedly tested negative, the risk is very small.

Deborah said...

Thanks, Dr...
It's refreshing to find a doctor with an open mind and happy to acknowledge the facts.
I think very few people can do that with cervical screening.

Doctors always make light of the risk of colposcopy and biopsies. My Dr waved them off as, "minor procedures".
I cared for my sister after a conization and it was far from a "minor procedure" in her or my mind.
Even if cervical cancer were as common as prostate or lung cancer, I still think it's unacceptable to make light of these procedures.

I think women "are" forced and shamed into testing. I'd add misled...I see that word used elsewhere by other women and I feel the same way.

It doesn't add up.
Even if you saved the few with a real problem, doesn't cost count for anything...the dollar cost and the costs to the health of the huge number of women being over-treated?
We're spending millions to save a few and harm lots more along the way.
We've created a burden on the health system and on healthy women.

It seems politics and people who benefit from all this testing & treatment, keep this testing alive.
People seem afraid to deal with these groups and most remain silent and allow it all to continue and get bigger every year.
If every woman actually wanted testing and was happy to accept the risks, that would be different. That's never happened though and I doubt it would.
Once women were given the facts, some of us would choose not to have screening or only have it now and then.
I don't think that would send up the death rate that much, but it would greatly reduce the number of referrals.

I've heard screening has reduced the death toll by 70%, which "sounds" impressive.
The untold facts...we're talking about very small numbers (so it sounds more impressive than it actually is) and there are other things besides screening, contributing to the fall. I'm sure they deliberately talk about the 70% figure to mislead us.
If they talked in terms of absolute risk or individual risk, it paints a totally different picture. The rareness of the cancer immediately becomes apparent.

Thanks for the information on the DNA test.
If you're negative on that test, does that mean you're fairly safe unless you have a new partner?

Screening seems to be above the facts.
Does the health of a few women mean we all have no rights - no right to accurate and complete information, no right to choose and no right to protect our health?

A few years back a senior male doctor was castigated for mentioning his concerns about so many women being referred after abnormal smears.
The response was swift and severe...the poor man was flamed. He couldn't reason with these people...it was irrational and sensational statements versus his valid and well researched concerns and facts.
That's why doctors are hesitant to say anything for fear of facing the firing squad.

The other thing...
Our doctors consider the benefits are worth the risks. We hear that all the time.
Do doctors have a right to make that determination when they're dealing with a rare cancer and a test that causes hugh over-treatment and harm?

When the risks of colpocopy are very high and the risk of cancer very low, no doctor can make that assessment for me or any woman.

I noticed from the link provided by Steve, that women with abnormal smears thought they had a 50% chance of having cancer, when the real risk is below 1%.
Is anyone surprised to read that?
That's exactly what they want us to believe....

Joel Sherman said...

Deborah asked: If you're negative on that test, does that mean you're fairly safe unless you have a new partner?

Once again, I'm not the person to give you a definitive opinion, but I think the answer is yes. Here's an article from the NY Times which suggests that it might be possible to go 5-10 years between having another test.
I doubt that a negative DNA test rules out all possible dangerous strains of HPV, but it certainly lowers your risk immensely.

Deborah said...

Thanks for the link, Dr
I think doctors would fight 10 yearly testing. I think frequent testing and all the useless follow-up is worth billions.
That must color the point of view of interested parties. That seems to be the case in most other businesses and industries.
I hope I'm wrong, but so much of this seems to be about money.

I think the comparison with Africa is often used to mislead us as well.
I've read about Africa's very high rates of cervical cancer and the reason given is usually the lack of a screening program.

I think that's misleading...they have many more risk factors.
Our rates have always been much lower than Africa and other third world countries.

In these countries, hygiene is a problem and people don't have the money for condoms or won't use them.
I think diet and poor health might be relevant because it affects your immune system.
The women also become sexual at an early age, have more children, miscarriages and often suffer terrible injuries during childbirth.
I know trauma and infection can cause cancer.
Many of the men are uncircumcized as well.
I've read the partners of uncircumcized men are more likely to get cervical cancer, HPV and other infections, as infections can live under the foreskin and it's harder for these men to maintain cleanliness.

I've also read, that in some third world countries, lots of men use prostitutes regularly.
I think it was an article talking about the problem of containing the spread of AIDS.
These men go back and have unprotected sex with their wives.
This would increase the risk of cervical cancer and other STI's as well as AIDS.

In the linked article, one American Dr says, "we use annual smears to get women in for other checks". (even though they know women don't need annual smears and are aware it increases the risk of over-treatment)

Of course, as others have said, these other checks are unnecessary, harmful, optional or controversial as well.
It's just another way of taking advantage of women.

Some of these checks are unwise.
As well as pelvic exams, it seems routine breast exams for women under 40 rarely lead to a diagnosis of cancer and often lead to biopsies.
Older women are more likely to benefit from a check every 2 years.
I read an article entitled, "Dr, hands off my chest" (which I can't find at the moment) which warned women to challenge their doctors and not just allow it to happen.
Although doctors are aware this check is not recommended, many continue with the practice, without giving the woman a choice or advising her of the risks and likely benefit.
To stop this practice, women were advised to take charge of the consult.
This may be difficult for some women.

I don't want breast exams or anything else, that I'm not convinced are in my best interests.
I agree that women have to control every visit to the Dr.
If we're there for a sore throat, then we need to challenge any departure from the sore throat.
A visit for a headache should not mean it's open season on our bodies. These liberties can end up hurting us.
If we want a yearly physical after a certain age, we should make a list of inclusions and exclusions and our Dr's should be made to convince us of the benefits of including other items.
We shouldn't be passive about our healthcare.
We need to control every consult.
Why is that necessary?
I'll need time to think about that...
What are the benefits and risks? I'll need some references.
Adopting that practice gives us a much better chance of protecting our individual health.

MER said...

In Sunday's 25 Oct. 2009) L.A. Times in the Opinion section. "With cancer, it's always personal." Here's the first paragraph:

"The American Cancer Society tried to downplay news reports last week that it was toning down its endorsement of the long-ballyhooed screening tests for breast cancer in women and prostate cancer in men. But in a statement, the group acknowledged that the 'advantages of screening for some cancers have been overstated.'"

It goes on: "The popular tests, it seems, too often result in overtreatment of milder cancers while failing to prevent enough deaths from the most aggressive types."

"With breast cancer...a 'special communication' in the latest Journal of the American Medical Assn. reports that the mass screening of women in recent decades has resulted in a 40% jump in detection of breast cancer, and far more treatment for the early stage 'low risk' variety. But that increase in early detection has come 'without significantly reducing the burden of more aggressively growing cancers and therefore not resulting in the anticipated reduction in cancer mortality." The article in the AMA journal calls for new approaches to screening for breast cancer -- and prostate cancer, too.

The article summarizes the studies that reached these conclusions. The writer also talks about personal experiences with both these kinds of cancer.

It ends: "So perhaps we should view those huge, important studies as a Seurat painting. Only when you get real close do you see the individual dots. From that perspective, the big picture looks different. Let's make it: What about us?"

Anonymous said...

Deborah,

I believe this may be the article to which you are referring:

http://www.independent.co.uk/arts-entertainment/health-hands-off-my-chest-doctor-1177987.html

Also, I read an interesting piece on the Yahoo news site today about how there is so much monetary waste in our healthcare system. One item that caught my attention was that 37 percent of such waste (about $200-300 billion a year) is blamed on overuse of antibiotics and overuse of medical tests to protect Drs. against malpractice. I don't know whether or not this data is entirely accurate, but it sure made me wonder, given the discussions we've had on dr. Sherman's blog about smear tests and how aggressively they are promoted.

Here's the link to the article:

http://news.yahoo.com/s/nm/20091026/ts_nm/us_usa_healthcare_waste

Deborah said...

Thanks for your comments.
I'm loving this open discussion - how long can it last before we're shut down?
MER, thank you for that information. Mammograms frighten me and I won't be having them.
I saw on the news that Therese Raine, the wife of the Australian Prime Minister, spoke at a breast cancer luncheon and urged all women to have mammograms and ensure their "women folk" had them as well.
She said early detection was your best chance.
I'm about to write to her office.

It is now very clear that the value of mammograms is highly debatable and the risks are a concern. Finally, these things have been acknowledged by many senior medical people.

It's then inappropriate, almost irresponsible, for a very high profile person to openly endorse and recommend the test.
I think these screening tests have put many of us in a difficult position.
Sometimes ignorance is bliss...most men and women happily follow their doctor's recommendations and think no more about it.
Then there are those of us who question, challenge, refuse - our doctors must love us!
I know if I get breast cancer, the first question will be, "Didn't you have mammograms?"...yet if I have a bad outcome with screening, most people just accept that as the price you have to pay to be healthy and careful. It's better than getting cancer.
Of course, now we know that mammograms may increase the risk of breast cancer. I think it has something to do with the compression and radiation.
I saw an article that said the compression may cause injury and trauma can result in cancer OR, that something non-threatening may change as a result of the trauma.
I have no idea whether these things are likely or not, but senior medical people are concerned about these things.
I can't just dismiss their research.
The screening authorities have a vested interest in recommending mammograms, their survival and the success of their program measured only in lives saved, not bad outcomes. Many doctors have a vested interest.
What vested interest would prompt a medical or scientific person to dissuade women from having mammograms?
It seems to me the "evidence" put forward by people connected with screening is more likely to be biased.

Thank you for the link to the article, Anon.
That is the article I was thinking about...there was also another article that talked of taking control in the consult room and that women were very bad at that...or most of us, anyway.
Apparently men avoid doctors (sensible people!) or are quite happy to say, No!
I don't think generalizations are always helpful, but the men in my life certainly don't feel intimidated and stood over by their doctors.

Thanks once again, everyone.
I'm really enjoying the discussion.

Joel Sherman said...

Anon, your link about the effectiveness of a breast examination is interesting to be sure.
I note no hard references are given with it. It makes sense that a conscientious woman would have a greater ability to detect an abnormality in her breast than a physician would. But I'd like to see some data documenting how effective both breast self examination is vs. a physician's exam. The data may well be available. If anyone has it, please post a reference.

Anonymous said...

Breast self-examination has been soundly discredited and no longer recommended in Australia.
My Dr says to be "breast aware" without self-examining.
I'll be offered a mammogram at 50...not sure about that, we'll see...
My doctor have never examined my breasts. She told me that doctors often do things without thinking and she thinks it's a bad practice.
She says the jury is still out whether a clinical breast exam is worthwhile for women over 50 who don't want to have mammograms.
If they have mammograms, then she'd prefer not to do an exam.
Some women request it and she explains her reasons for preferring not to do one...if they insist, then she does the exam.
I like my DR because of her moderate approach - less is usually more and more effective.
She has never pushed screening or anything else onto me.
I saw her recently for a persistent allergic reaction and she asked me whether I wanted the free innoculation against swine flu. I didn't want it and she was fine with that...
I've heard some doctors are really pressuring their patients to have it.
She says that all things have risks and side effects and many things are not black or white.
Ultimately, my health is in my hands. I work out what risk I'm happy to accept.
The swine flu jab has been linked with some nasty side effects.
I don't get colds very often and have never had the flu.
I'm not a high risk person (elderly, sick, pregnant) and I think that swine flu has been largely contained...the people who died here were usually high risk...others had mild symptoms.
I feel sorry for women who are stood over by their doctors. I'd be looking for another one.
I think American women are treated very badly from what I've read...their doctors seem very unreasonable and controlling.
I couldn't stand that and would avoid them.
Hopefully, things will change and more doctors will become moderate and adopt a more relaxed attitude.

Kate

Anonymous said...

Here's an item that says pelvic and breast exams (and self-exam) are NOT recommended for women on the Pill.
If it's not recommended for these women, I doubt you could argue it's important for women not taking the Pill.
Older women and mammograms is another question and reading this blog, up in the air, that's for sure...
In the absence of symptoms or a lump or other change, CBE's shouldn't be done.
If ANY exam or test is not medically required, it shouldn't be done.
Anything more than that is taking advantage of a woman's need to see a doctor to get reliable contraception or some other drug or treatment.
Many doctors think they have the right to do as they please with our bodies without explanation or our permission and when there is no need at all.
I have never permitted that and never will...

http://humupd.oxfordjournals.org
/cgi/content/full/10/5/449

Joel Sherman said...

That's an interesting reference, Anon. It does question the accuracy and sensitivity of all breast examinations. I'm sure there is lots of information available on that point. But the main point of the article is that these exams should not be made mandatory on an annual basis for women on BC pills. The main reason for this is that breast cancer is uncommon at child bearing ages, though certainly not unheard of. The article doesn't recommend regular breast self examinations either, though then states that most cancers are found (excluding mammography) by women incidentally while showering etc. That seems contradictory to me though. Why wait till you can feel a mass incidentally if you could detect it earlier by regular self exams?

Joel Sherman said...

Here's an article specifically referencing the utility of screening senior citizens for various cancers, including breast, prostate, colon, and cervical cancers.
There is no unanimity of opinion but many of you will be interested in the pro and con arguments and the recommendation for informed consent.

Joel Sherman said...

Here's another article that will interest most of you. One of the developers of the cervical cancer vaccines recommends against it!

Elizabeth said...

I think the argument goes...self-examination is unreliable and ends up sending many women for biopsies.
Breast aware means looking at your breasts in the mirror after showering - looking for changes in shape, any dimpling, discharge or redness.
I know myself with self-examination, I'm convinced I have lumps every time. I stopped doing it years ago.
Women under 50 have naturally lumpy breast tissue which makes self-examination even more unreliable.
Even older women tend to "find" things that are nothing.
I suppose that's why the recommendation is now "breast awareness".
Women probably do pick up many cancers while showering, but that could be breast awareness and not necessarily self-examination.
I know an aunt used to self-examine every month and after her third biopsy, she gave it away.
She found it made her anxious and always reminded of cancer. That mindset is probably conducive to finding lumps.
I read somewhere that biopsies are a risk factor for breast cancer. I have no idea whether that's right, but having biopsies is far from a pleasant experience anyway and very stressful.
I think stress is a silent killer in our society. I think any routine exam, procedure or test that really causes stress and worry to the patient needs to be weighed up carefully with individual risk factors - is it really worth it?

Anonymous said...

This may interest some of you...an article that shows doctors often continue to do what is no longer recommended...
Why?
Habit, personal belief, thoroughness and other reasons.
The article concludes if doctor's feel this way, the woman should be informed they are departing from a recommendation.
It seems doctors stick to recommendations for invasive exams and tests, but when the rules change, they keep examining...
When it's an invasive exam or an exam that can lead elsewhere and ultimately harm you, I think that's very poor.
I don't agree with this conduct at all.
I've always refused invasive exams that are "routine"...
I don't think they're necessary, so why would I put myself through them?
My view: Deal with the reason for my appointment and don't engage in fishing expeditions.

http://www.racgp.org.au/afp/200805/
200805thistlethwaite.pdf

Anonymous said...

That is the frightening thing about all of this...the silencing of people with another point of view especially educated people close to the research and development of these tests.
It is mind control - promote and talk about what suits the powerful and freeze out anyone who has anything negative to say that might affect the bottom line.
The bottom line is probably money or power.
The Gardasil vaccine has been pushed hard and many doctors have said parents are being short-sighted and negligent if they don't have their daughters vaccinated.
Why hasn't this information come to light earlier?
Because no one would print her side of the story - someone directly involved...
Is this a communist country or dictatorship?
What happened to our democracy?

Anonymous said...

What I don't understand?
I've read some of these links and they seem to bear no resemblance to current screening programmes.
Informed consent, women being "offered" testing, the pros and cons...
When has that ever happened?
Has any woman been in this fortunate position?

My introduction to testing -
I received a letter from my GP complete with an appointment time as I, "was due for a pap smear."
No information at all and done in such a way, you had to phone and cancel the appointment, if you didn't want the test.
I did that and received a grilling about another time and not to delay getting this "cancer-preventing test."
After tossing out a couple of letters, I received a form asking for my signature.
If I didn't sign and return it, then I would be taken off patient records.
The form basically said I'd been asked to have the test and had not "presented" and if I got cancer, the surgery could not be held responsible.
If I returned the form, a Dr would need to speak to me anyway, about my decision.

Then I read this is a rare cancer, and that the test has a high failure rate that means biopsies (how awful!) and that I'm supposed to be informed of the risks before making "my" decision.

How did we get so far away from that?
I was made to feel like a child caught setting fire to the classroom and summoned to see the headmaster in big trouble.

The situation has improved a bit since that time.
I did receive a list of the risks in the mail after Mrs. Hazel Thornton made a fuss.
Bless that woman!
The pressure is still ever-present though...
As a fit and healthy woman though, doctors rarely see me.
When they do, I'm ready for them and thanks to this thread, armed to the eyeballs with information.
I do find it shocking that doctors were able to turn an offer, into an order.
Even with risk information, it is still very difficult to refuse smear tests.

Joel Sherman said...

Here's an interesting article from the Huffington Post concerning why Gardasil was just approved for use in guys now rather than when it first came out.
According to the article they wanted to initially advertise it as a vaccine against cervical cancer and play down the fact that it's really a vaccine against STD's (sexually transmitted diseases). As they're pushing the vaccine for girls as young as 9, they thought that the STD perspective would alienate a lot of parents.

Anonymous said...

I've heard that about pap smears.
That cervical cancer is caused by being promiscuous.
They test everyone (or want to) to take away the stigma.
They say all women are at risk if they've had sex once.
The risk factors talk about promiscuity though.
Having sex before you're 18, multiple partners, STI's...
The real kicker...
A lot of very high risk woman are not really concerned about their health anyway and are the last people to get tested.
The death rate remains because the highest risk women are not being tested, while low risk women are being tested to death and end up having all that extra treatment.
If they were honest about risk, some low risk women would be spared all of this...and maybe a few more high risk would get tested.
I doubt some very high risk would bother though.
Street prostitutes would be extremely high risk. They wouldn't get tested because their health is a low priority or they wouldn't be working on the streets. Many of these women are drug addicts or damaged in some way.
I see these girls working a few suburbs away and it breaks my heart.
What an awful life.

Anonymous said...

Something I forgot to mention.
Smoking, previous comments are so correct. People don't fear lung cancer even though there is a strong link between smoking and lung cancer.

I have friends who obsess about cervical cancer and would be over-tested for sure.
They all smoke fairly heavily.
I've never heard them mention lung cancer.
They talk about cervical cancer all the time.
Looking at cancer rates, lung cancer is 1 in 23 and cervical 1 in 196. These rates would go up and down, country to country.
To fear cervical cancer over lung cancer doesn't make sense and even less when you're a heavy smoker.
Women have been tricked and made to fear something that's not really a big threat to any of us.

Anonymous said...

Great site and info!
These stats are published by Papscreen. The colposcopy rates and results. You'll see the highest figure by far is for benign or normal changes.
We know that most CIN 1 regresses and a fair proportion of CIN 2 and CIN 3.
You can see that healthy women pay a high price for the tiny % who have a serious problem.
I wonder if these stats would be a real concern if they related to something other than cervical cancer.
It seems everything is worth it, to save a few from cervical cancer.
Keep in mind the risks of colposcopy that have been mentioned here.
http://www.vccr.org/stats_reports/
2007/histology_07.html

Joel Sherman said...

Sienna, Melbourne asked on October 17 referring to a letter in the BMJ from Dr Andrew Rouse: I really found the figures by Andrew Rouse helpful...is it possible to find out how this man, an academic in public health, put together those figures?
Rouse's letter states that if 10000 women were screened by the NHS for cervical cancer at age 25, 10 years later 9963 would be alive. If they weren't screened 9962 would be alive. At age 55, the same numbers were 9457 vs. 9450. His published letter does not explain how he derived those figures, so I emailed him and asked.

He graciously responded:
I have read the bmj letter and recall it well. Unfortunately I no longer have the background papers anywhere.

However I clearly remember how I constructed table I

I (tediously) constructed life / survival tables ( I used a similar technique for CHD deaths – referenced below)

In short I too England & wales office of Stattistics annual death report data

1. I used all caiuse death data
2. 2. I used cervical cancer death data
3. 3) I subtracted 2 from 3
4. I calculated survival curves.
5. The BMJ didn’t like graphs in 200 so I converted the curves back to tables.

Any Excel proficient person could reconstruct such curves – I have done the same for swine flu vaccination and will send you copy of the paper.
(Signed Andrew)

Pamela said...

This is very interesting information that most women don't know about...
What is the best way to get this information out to women?
I think the majority of women have been misled.
It's bad enough when we find out this is a rare cancer, we've all been led to believe this is a very common cancer.
Just as bad...that this test leads to so many unnecessary biopsies and many women are left with health problems.
This is shocking...how has it been possible to keep the truth behind this testing so quiet?
I've never heard any of this...and most women would be relieved to hear they can responsibly forget about this testing or have it every 5 years if they wish...
This must be the most successful brain-washing campaign of all time.
Are we all stupid or just too trusting?
Also many women couldn't avoid this testing unless they had strong personalities and it's even harder in some countires, if you want birth control.
With this information in the public arena, more women would feel more confident to challenge doctors.

Joel Sherman said...

Pamela asked: What is the best way to get this information out to women?

Well you could give the link to this thread on relevant women's websites and see how much interest you garner. Apart from that you’d need to start a website dedicated to exposing myths about cervical cancer. It's a substantial undertaking but doable if you have the interest and a few bucks.

Anonymous said...

Many women's health sites are so pro-smears, you'd probably get a hostile reaction.
It seems saying smears are unnecessary or should be optional or that cervical cancer is not a big risk are very controversial statements, up there with religion and politics - very emotional topics.
Misleading information abounds though that reinforces the myths that currently exist about cervical cancer...even from "medical" sites.
I've attached one that talks about 9700 cases of cervical cancer in the States every year.
It then says that seems a small number BUT...1.2 million women have dysplasia..."if left untreated, dysplasia will become cervical cancer". A definite, very dishonest and incorrect statement.
This is clearly designed to scare women by inferring...if we didn't have smears, dysplasia would turn into cancer and the death toll would be over a million women.
Smears are containing this massive problem.
This is rubbish and anyone "medical" would know that...
Almost all dysplasia does NOT turn into cancer.
Many talk about false negatives and don't mention false positives at all...the major drawback of screening. In other words, risk!
When women read these things in a "medical" context, it's gospel.

I think these publications need to be challenged...they're printing false and misleading statements.
Dysplasia is common as dirt...it's called the dysplasia swamp and some say it must be part of the bodies regenerative process. I know Angela Raffles published an article where she talks about the "dysplasia swamp".

Instead of saying dysplasia is very common and a very small number will progress to cancer...it's worded to deliberately mislead.
I've seen it many times.
I've attached an example, I found in a few seconds.
I'll bet not one person has tackled them on that statement.

http://www.medicalnewstoday.com
/articles/60731.php

I think we need to pressure our Governments to release risk information and balanced information. They are the ones funding the screening authorities and who pay doctors to reach targets.
I think the media is powerful. It surprises me that more articles aren't published on this topic, but there are certain publications that take on the controversial topics.
I plan to write to Four Corners, a TV program that deals almost exclusively with controversial topics.
A backlash is nothing new to Four Corners.
Kate

Joel Sherman said...

Here's a just released summary of an article from the Annals of Internal Medicine, a respected US journal. It's findings will be of interest to you. Two short quotes:

1.) Internal medicine doctors most often reported screening practices that agreed with the guidelines, followed by family doctors and then gynecologists. Yet, only 27.5% of internists had guideline-consistent responses. When the doctors' responses differed from guideline recommendations, it was usually because the doctors recommended screening when the guideline did not or more often than the guideline did.

2.)What are the implications of the study?

Many doctors reported cervical cancer screening practices that do not agree with the guidelines and reported overuse of cervical cancer screening.


This is clear evidence of what you've all been saying. American physicians overuse even the relatively conservative guidelines that are suggested.

Elizabeth said...

I have just read an interesting book on this topic,
"Should I Be tested for Cancer" by H. Gilbert Welch, MD
Sadly, Dr Welch doesn't say all that much about cervical cancer.
He makes lots of points though that equally apply to cervical cancer screening.
It helped me to understand why doctors really push hard to get us in these testing programs.
I'd recommend this book to anyone interested in the risks of screening. He has lots to say about breast and prostate screening.
One statement really jumped off the page and connected with me.

Page 31 he says: "But I object to the emerging mindset that patients should be persuaded, frightened and coerced into undergoing these tests. There is today a certain "medical correctness" about screening - making patients feel guilty if they choose not to pursue testing. This is wrong".

I couldn't agree more with this statement.

He also explains why it's difficult to change screening policy. He says a committee of experts were asked to consider the benefits of screening mammograms for 40-49 year old women.
They found the benefits were too small to make a finding in favour of screening. It was inconclusive at best and women should decide for themselves whether they want to be screened.
Self-interested radiologists went on the attack, women's groups responded angrily and the Senate voted that the Committee should "review" their decision.
Under huge pressure, they voted in favour of screening. (all but one member of the Committee anyway)
What was the point of setting up a committee of experts, if there was only ONE acceptable answer?

So you see the incredible pressure faced by people who want to adopt common sense screening policies and protect people from harm.
There are self-interested groups, always someone who was "saved" by screening and groups who believe screening is a right and always a good thing.

He also talks about the real dangers of screening...finding pseudo-disease - cancer that would never bother you.
Thyroid cancer is fairly rare...but a study that took biopsies of the thyroid, found lots of cancer, confirming there is lots of pseudo-disease of the thyroid gland. (the same is true of the prostate gland, breasts and kidneys)

Apparently, they often find spots on the kidneys when they're doing abdominal scans for other things.
The patient then "might" have cancer and can either wait and see if it grows (which doesn't always mean cancer anyway) or have the kidney out immediately.
You might be removing a healthy kidney and there's a fairly high chance of mortality and complications with this surgery.
(apparently, you can't biopsy a kidney)
DCIS (ductal breast cancer) creates the same problem.
What to do? Watch it, start chemo and radiation, have surgery...

Screening can put the patient in a difficult position with no clear answers and lots of worry.
It can more importantly, expose us to high risks to our health.

Apparently, there is lots of renal cancer that does not progress. (according to Dr Welch)
A screening program has been suggested for renal cancer.
Given the amount of pseudo-disease, this could be an absolute disaster.

In the end, with all this screening, most of us may end up "sick" and become "patients".
There will be few healthy people left...

Screening often uncovers cancers that would never have bothered us and misses ones that kill us. (interval cancers)
We also have false negatives and false positives.
It's not black and white at all.
This is really a scary area and every day more and more screening tests are being introduced and considered.
Dr Welch also talks about statistics and warns that "5 year survival rates" are misleading. Basically you can manipulate figures to show anything that supports your case.

We don't and won't get this information from our doctors.
We MUST do our own reading.
Accepting that all screening is a good thing is more likely to end in tears and regret.

Anonymous said...

That is the problem...the misinformation is everywhere and repeated over and over.
The facts can be hard to find for a lay person.
Many of the people mentioned in this blog contributed to a general leaflet produced by the "Sense about Science" site and called, "Making Sense of Screening".
This leaflet doesn't seem to have been widely distributed at all....it took some searching to find it.
My doctor's surgery has all the pro-screening brochures on display.
No one seems to make available the more scientific leaflets.
I guess it's because doctors are trying to "sell" cancer screening.
Anyway, thought it might interest some of you.
Lois
http://www.senseaboutscience.
org.uk/PDF/MSOScreening.pdf

Anonymous said...

Another item that confirms numbers are played with...to inflate the benefits and deflate risks. It sounds like a bit of a political game.
Taken from the linked feature:-

"Cancer information brochures, for example, provide a great challenge. Most brochures in the United States and in Europe do not present medical research candidly. For instance, benefits are often presented as relative risk reductions, as they are bigger figures, whereas potential harms, if mentioned at all, are reported in less impressive absolute risks, such as that one out of 1,000 women will contract mammogram-induced breast cancer. A few health organizations have responded to our work and reworded their publications accordingly, whereas representatives of others have openly told me that their primary goal is to foster compliance, not comprehension."
Do you say mammograms benefit women with a 25% reduction in the risk of cancer or 0.1%?
It just depends whether you mention the relative or absolute risk reduction of mammograms.
The final comment is honest and not really unexpected.

"Two officials took me aside afterwards and lauded the program for its potential to make healthcare more rational. I asked if they intended to implement it. Their answer was “no.” And why not? As they explained, transparency in this form was bad news for the government — a benefit of only 0.1 percent instead of 25 percent would make poor headlines for the upcoming election! In addition, their board was staffed by the presidential administration, for whom transparency in health care was not (and is not) a priority"

I don't think I'll be relying on these people to advise me on the benefits and risks of any screening tests.
What about you?

http://www.psychologicalscience.org/observer/
getArticle.cfm?id=2253

Joel Sherman said...

The Wall Street Journal health blog has had another pertinent post titled 'Who Should Get a Pap Smear.' I posted a comment which is number 6 (presently the last comment).
It at least illustrates one way of getting the word out re cervical cancer. My comment was:

Pap smears are one of the most over utilized tests in medicine.
Cervical cancer is essentially an STD. Women who are monogamous or abstemious with 3 prior negative pap smears have a risk of developing cervical cancer which approaches zero. Cervical cancer is an uncommon to rare disease to begin with but women are never told this. It is very rare indeed to have it develop at an advanced age. The incidence is only slightly greater than testicular cancer which we never hear anything about. My wife has had about 45 annual pap smears which have all been negative. Now that she is over 65, no physician has yet told her that there is no indication to do anymore.
In short, most women still believe that cervical cancer is a rampant disease which requires annual testing to prevent. They are never told the actual facts. Informed consent is completely lacking.
My blog ( http://patientprivacy.blogspot.com/2009/05/womens-privacy-modesty-concerns.html ) has a thread on women’s issues which is full of educated women who are angry about how they have been mislead about this. Each woman should be given the facts and she should be able to decide for herself whether her individual risk/benefit ratio warrants regular testing or not.

Anonymous said...

Loved your comment!
Every comment is valuable and helps get word out...
Perhaps, someone will be empowered to take charge of their healthcare.
I think word is getting out about breast cancer screening.
I read this article about radiologists and the backlash about mammograms.
It really is frightening how all of this has been hidden for so long and how the truth was so manipulated to create something that suited so many "interests".
It really brings it home to me...there is only one person who really cares about my health...ME!
I'm not interested in money, power, politics, votes, control, public health objectives, the next election...
I care about me, and my health.
I'm also concerned about other people...we all deserve the truth and a choice about exams and screening.
Clemmy

http://www.diagnosticimaging.
com/display/article/113619/1482389?CID=rss&verify=0

Anonymous said...

I appreciate your comments on the WSJ piece, Dr. Sherman. It takes a brave person -- esp. a member of the medical community -- to question screening exams such as thesewhen most are overwhelmingly in favor of them without any question or discussion of possible risks or downsides.

As I've said in a previous post, it's as though we're being conditioned to be fearful of everything all the time. I know I am, thanks to these a;arming articles in women's magazines and on the news. We can never assume for a minute that we might be OK and healthy. I almost think the stress and worry caused by such extreme insistence on things such as cervical screening does more harm to our physical and mental health than anything else. We shouldn't have to live that way, plain and simple.

Anonymous said...

Coming from a senior physician...those sorts of comments have a real impact.
People are much more likely to listen.
I've posted to sites like that over the years, but often my comments don't appear.
It's censorship, in my opinion, when they happily post all sorts of nonsense and of course, the "I was saved" stories.
The latter stories confuse me.
If I read about a man dying of liver cancer, I feel terribly sorry for him, but I don't feel anything more than that...
I don't feel like someone is making a point or trying to scare me.
The cervical and breast cancer stories always made me uncomfortable because they invariably lead into a warning about women who "avoid" screening.
The message is clear...avoid at your peril.

I don't think these stories take away our right to choose. These women may have been high risk, for all we know.
Regardless of your risk, we still have a choice, especially when this cancer is rare and the test so inaccurate AND when we're concerned about the risks of testing.
Somehow these stories and the parading around of women in this unfortunate position, makes me feel it's all designed to scare us into blind compliance.

I've also read posts on women's sites that are pure nonsense, but they get posted.
"I'd like a smear every 6 months because this cancer is everywhere"...absolute nonsense and following this advice would land you right in the day procedure rooms. It still gets posted though...
I read once..."pap smears mean you'll never get cancer of the ovaries"...
But, it still gets posted.
Or, routine pelvic exams, "You must have them, to make sure you're healthy"..that is a matter of opinion! That statement is certainly not supported by the medical literature.
No doctor I've ever seen in the UK or Australia has suggested I have routine pelvic exams, "to be healthy" or for any other reason.
Aside from investigating symptoms, IMO, they're of low clinical value and can lead to other equally unpleasant things.

I so agree with the other comments, we as women need to have confidence in our health and bodies and stop acting on fear...acting on facts makes more sense to me.
I don't have my liver checked every year and find it an insult to my intelligence and sex to suggest my reproductive organs need a "once over" every year.
Elizabeth

Anonymous said...

The current approach of assuming we're all ill...until given the all clear...has never felt right to me.
I look after my health and don't feel thorough exams and tests would benefit me.
Heart disease has killed all of my relatives.
I started having my BP and cholesterol checked in mid life and my dr now wants to check blood sugar.
I can see the sense in that.
I've been pressured to allow a free for all with my body.
I'd never allow it.
Not one person in my family or circle has ever had cervical or breast cancer or any sort of cancer.
I don't have any high risk factors for cancer.
I don't worry about these cancers.
I see the things most likely to get me in the end and address them.
Concentrating on rare cancers or having tests that are largely unproven in reducing your risk doesn't achieve anything and may disadvantage you.
If you forget the real threats and your genetic pre-disposition, you're ignoring the elephant in the room.
How many people die from heart disease?
How many from cervical cancer?
Yet most women give heart disease no thought at all.
Breast cancer is a big problem.
The test currently on offer has too many minuses for my liking.
As others have said...being breast aware is my approach.
LEE

Anonymous said...

You've been talking about the over-use of smear tests.
This leads into the overuse of colposcopy and cervical biopsies.
I knew the problem was bad in America.
Many girls in their 20's have had a colposcopy.
This makes sense as these women have the highest risk of false positives.
They're not screened in many countries because of this serious problem.
There is a website "My Colposcopy Story" with mainly very young girls contributing to the site.
Some have had 4 colposcopies already and some are still not sexually active.
This is really scary stuff.
The damage being done to their bodies and their minds. I found it upsetting and disturbing reading.
The excessive use of colposcopies is bad everywhere.
But this stuff is totally out of control in America.
I found a research paper about excessive colposcopies in a med journal.
It said if all women 18 to 70 had screening every 3 years (and we know most American women still have annual screening) and had HPV triage, more than one million excessive colposcopies would be performed annually.
The figures rise to over 4 million with other variables.
The colposcopy business in the States is worth just over a billion dollars.
If this were a simple blood test it would be bad enough.
When you read what these girls go through, it takes it to a very serious level.

What is going on?

Please see:http://www.ncbi.nlm.nih.gov
/pmc/articles/PMC2746633

Joel Sherman said...

I think that you are making progress in the fight for rational cervical cancer screening. Here's a current article from Time blogs questioning our current practices. The article I quoted above in the Annals of Internal Medicine has precipitated a lot of comment.
It is amazing that only 16% of gynecologists adhere to present guidelines for pap smears that would enable many women to have them done only every 2-3 years. One has to wonder why gynecologists were the worst specialty studied. There may be multiple reasons but one can’t help but thinking that the fact that they would take the worst economic hit if most women only came for exams every 2-3 years instead of annually colors their practice. If you have had several negative paps and are in a mutually monogamous relationship, you should really question your physician if he/she recommends an annual pap.

Anonymous said...

I've read a few articles where a gynecologist has said if women don't need pap smears, they won't come in for the other checks.
I think they are desperate to keep these checks "mandatory" or just part of being a responsible woman (another expression I've seen).
If women knew the facts behind this test and exams, many would choose not to bother or not every year anyway.
One also said a change would cause confusion in women's minds.
That is condescending and unprofessional when they know over-screening women leads directing into over-treatment. This attitude harms their patients and is totally unacceptable.

I think women need to understand the "real" risk of cervical cancer.
I'm not sure how that can be done after years of scare campaigns.
Women should understand they have a choice about these things.
Routine pelvic exams can be nothing more than optional.
Their is little evidence supporting the need for them.
In fact, my research indicates they are of poor/low clinical value in the absence of symptoms.
It is not irresponsible or foolish to decline this exam.
In fact, breast exams for women under 40, routine pelvic (and definitely rectal exams) and mammograms are all optional and there is sound evidence they can disadvantage you.
Cervical screening...women need to understand it's optional. It is not reckless or foolish to decline.
Fact: It's an unreliable test for a rare cancer.
I think women should be able to consider their risk profile and then decide on a screening schedule or decline screening altogether.
A low risk woman has a "near zero" chance of getting cervical cancer and testing exposes you to a high risk of at least one unnecessary colposcopy/biopsy.
It will take some time to get this message out...to undo the damage.

Any progress is encouraging, any critical review is welcome.
Dr Sherman, you may be one of a handful of physicians who can SEE the facts and have spoken out.

I think US gyn's use this test annually because of the routine gyn exams THEY say are essential.
I guess they figure, "while I'm down here" I may as well do a smear.
If women decline these exams or have them less frequently, it will be more difficult for these doctors to over-screen.

Elizabeth

Anonymous said...

Great that people are starting to talk about all of this. We still don't hear much about patient choice. The words are still imperative. Sexually active women must or should have smears.
I see Dr Sherman has said low risk women have a near zero chance of cancer and it should be their choice to have pap tests.
Wow!
No doctor ever says anything like that - never.
It is never mentioned that all women have a right to say no to this test and exam.
They often say reducing screening will save time and money and never mention that these exams are really horrible and distress many women. Not one person seems to care about that fact.
I have never understood why all women need testing at 21 and it is something never queried.
Not one other country tests virgins.
My Dr couldn't tell me why it was necessary at 21 and didn't think I needed a proper answer.
We can't change this nightmare overnight.
I'm grateful to all of you for helping to loosen the chains that prevent our right to choose.
I'm happier not having these checks. Our happiness is not important to doctors.
My happiness is important to me and if I don't want these things and prefer to carry a tiny risk, that should be accepted.
I have always been made to feel we have no right to refuse any of this testing and that's wrong.
Women have rights and that doesn't change when we're talking about preventative medicine.

Joel Sherman said...

Anon said: I see Dr Sherman has said low risk women have a near zero chance of cancer and it should be their choice to have pap tests.

I did say that low risk women have a near zero risk of getting cervical cancer, but I mean in the short term of a few years. I'm not sure anyone is certain what the long term risks are if a low risk woman discontinues all screening. It's still up for discussion and will be better defined by newer tests such as HPV DNA. But I believe it should be the choice of all women to be tested or not to be tested no matter what their risk is. Legally this of course is true. No one can get force anyone else to be tested or to visit doctors at all. But if you are low risk the time you can go safely without retesting is surely still up for debate. For some reason I think women seem to succumb to medical pressure to be tested more than men do in analogous situations. That's both good and bad. But the ladies contributing here clearly are able to think for themselves.
Once again I do not have the knowledge or training to make any definitive recommendations on cervical cancer. I started this thread having very little current knowledge of cervical cancer. Your comments and references have stimulated me to learn much more.

Anonymous said...

Yes, I understand what you're saying...
I just feel when the risks of this test are very high, the test very personal and the risk of this cancer very low, I'd prefer not to bother. The chance of a low risk woman being helped by this test is tiny. In an earlier post a woman made a good point. When the risk of biopsies is very high and the risk of this cancer is very low or tiny, it is perfectly understandable why some women might refuse testing. The numbers by Dr Raffle were very reassuring as well.
Some of my friends have had suspicious cells removed and a couple more than once.
I don't want to know about every bad cell and don't want that kind of life.
When 99% or more of the cells are nothing to worry about, it's not something I want to start.
There must be lots of suspicious cells all over our bodies.
If they were all removed, we'd spend our lives in surgery.
If these odds were given to me about anything else, I'd say forget about it...why should I feel differently because it's about cervical screening?

Anonymous said...

This is a personal question and I understand if you don't wish to answer.
You say in your reply in the NYJ that your wife has had 45 smears so far.
Has this forum changed her view of this testing?
Does she feel angry or misled by her doctor?
I think she's been at high risk of a false positive with all of that testing.
In other countries she would have had fewer intimate exams.
No pelvic exams and only 5 to 25 smears. In your country, she's had 45 and more. A lot of smears for a healthy woman.
Will she stop the test or speak to her doctor?
I would be very angry if I were put through so many tests when there was no need or when it might lead to a bad outcome with no extra benefit.
I thought your post had an error when I saw 45 smears.
My mother had 5 smears and ended at 50.
How can your doctors do this much testing when others do much less and have less cancer and fewer false positives?
What is their explanation for their medical advice?

TVD

Joel Sherman said...

TVD, my wife has changed her mind about what is necessary, but is not angry about past tests. Remember that when she started getting exams in the 1960's, cervical cancer had a higher incidence and was poorly understood. It was not known to be an STD, and testing everyone seemed rational. After several children, she is used to being examined and does not find the exams onerous.
But she was startled to find out that official US guidelines of the past ~5 years presently recommend testing for her only every 2-3 years. Now that she is over 65, one set of American guidelines states that she doesn't need anymore testing. No physician or gynecologist has ever told her those guidelines. That she does resent.

Anonymous said...

Q:Cervical cancer had a higher incidence in the 60's...

I wonder how many lives have genuinely been saved by this test. Not including the women who *think* they were saved. We read there is a 75% reduction in the death rate, which sounds great. When I looked at the numbers though, it was actually a fairly small number of women having regard to the huge amounts of testing and follow-up. Of course, they don't count all of the negatives surrounding this testing. I think low risk women have really paid in a big way to save those women. The other curious fact is whether the death rate would have continued to fall with no screening at all. If you look at a graph of the mortality from this cancer, it was in steep decline well before screening started and continued to fall.
I wonder whether that would have happened with no screening at all.
It may have been kinder to low risk women to target high risk women only. I think the link between sexual activity and this cancer was well known even in the 60's. I know one doctor in Great Britain thinks this test spared us an epidemic after the swinging sixties...just words, totally unsupported in a scientific way.
I think if the dust ever settles and we can see this testing clearly, many may be in for a rude shock. I firmly believe this testing has only been in the interests of a tiny number of women. I've read that all women were included to destigmatise this cancer and it's link with sexual activity. If that is the case, these people have no conscience or ethics. If the facts were presented to high risk women and they didn't want the test, case closed. Why should low or no risk women put their well-being on the line to make high risk women feel more comfortable?
RR

Anonymous said...

Your women have to find ways of coping from childhood. A friend from Ohio had yearly medical exams from childhood that included genital inspection. Her mother said she had to have the exams. At 14 she was taken to a gynecologist for her "first visit". She refused to go back and since then only has exams when there is a reason and refuses anything more. She says they can say what they like, as an adult she can't be forced. She also knows all of this is not required in my country and we're all doing fine. Any exams are on her terms. She always felt like a body being handled, like an object. She still carries the mental scars from those days. This is not unusual. If you do a search you'll see many sites giving girls and parents information on the first gyn exam. They are all American sites. I saw one that said the first exam should be at 13 to 15. It is hardly surprising then that women continue to be treated like bodies or objects all their lives. A women having 45 pap smears is an example. In pregnancy I had a total of 4 pelvic exams. My friend had to fight to keep it to 6. Her doctor wanted to do one at every visit, many during labour and several after the birth over the next year. If she'd gone along with it, she'd have had 16 exams. We had our babies at the same time and she would call me and find out what my doctor was doing and recommending. She doesn't trust any of your doctors. We all have problems with our doctors and screening. I think American women have a fight on many fronts. It seems your women have to find a way to cope or rebel. Your wife is used to these exams. I imagine many women must find a way when they are constantly being examined. Your privacy and embarrassment and all of those feelings must become dulled or worn down. My friend said she would freeze mentally and physically and went into a sort of shock. It is almost like your women are just ovaries and such and doctors forget there is a girl or woman with feelings attached.It seems no allowances are made for women at all with doctors using stirrups.
I'm relieved and grateful I wasn't treated in this way. The only women I know treated like this are American. I would not have coped well at all. I think any review of your system needs to start at the beginning.The excess is there at the start and continues to old age. I saw somewhere that 20% of women in their 80's still have annual pap smears. Your wife may have to call a halt to these tests or she might be up to 65 tests by then.It might be time she became a rebel.
We all have problems talked about in this thread. I feel your women are in serious trouble though, very serious trouble.I don't like to use this word, I saw it used by a girl after a very bad experience at one of these yearly gyn exams, she called it abusive.
I think I agree with her. This is not an anti-American post. My American friend was my bridesmaid and I have visited your country twice. We all have good and bad and many things about your health care for women is bad.I hope the rebels overtake the others and force change and make these exams a thing of the past.
Sorry this is long. I just started writing and couldn't stop. There are not many opportunities to talk about these things and certainly not on an American website.

Anonymous said...

The last post spurred me to look for current recommendations.
These are the 2009 recommendations from the American College of Obstetricians and Gynecologists (ACOG). It appears these are the more lenient guidelines(!)
I found this list at http://www.medscape.com/viewarticle/701744

Girls 13 to 18 and not sexually active - no pelvic exam or smears unless medically indicated. (Breast exams are not mentioned, but I assume they're always included)

Younger than 21 and not sexually active - no routine pelvic, smears or testing for STDs.

If sexually active, a smear 3 years after the onset of sexual activity and annually thereafter. Routine pelvic - when indicated.

21 to 29 - (whether sexually active or not!) Annual smears and pelvic exam. (and I imagine a breast exam and possibly a rectal exam)
Sexually active and under 25 - include screening for chlamydia and all sexually active teenagers should be screened for gonorrhea.

All teenagers and women 19 to 64 who are sexually active should be screened for HIV.

30 to 64 - Annual pelvic and smears. Smears can be decreased to 2 to 3 yearly after 3 normal results AND if no history of CIN 2 or 3, you're not immunosuppressed, not HIV positive and not a DES woman.
(although it seems doctors ignore this recommendation and screen annually regardless)

Older than 65 - annual pelvic exam. No smears recommended, if there have been no abnormal smears in the last 10 years and assuming the woman is not in a high risk group. (see above)

Complete hysterectomy for non-cancerous conditions.
No smears or pelvic exams although annual external examination of the external genitalia should continue (!!)

It's reasonable to stop pelvic exams when age or health issues reach a point where a woman would not choose to treat a condition detected during routine exams.

There you have it...
No mention is made of mammograms, but I've read they are recommended annually from age 40. (probably by the American Cancer Society)
We know physicians ignore the reductions and continue with annual smears. I imagine the trend is to do more than less at every age.
This is so excessive, it does surprise me that more doctors and women don't call this group to task.
It seems like a desperate and poorly veiled plan to keep waiting rooms full...
As others have said, I agree defensive medicine plays a part.

The recommendation that women who've had complete hysterectomies should have an annual inspection is astonishing.
Even these women can't escape these doctors. It seems they're reluctant to let any woman escape their clutches.
I've read on ONE UK website that women can (if they like) inspect their genitals every few years using a hand mirror.
I think if you went to see a foreign doctor and asked that your genitals be examined for no reason, you'd be considered very odd or a hypochondriac.

Anyway, compare that list with the way medicine is practised in your country...we have problems, but the other poster is right.
US women really need to break down this oppressive regime that's called womens health care.
I look at that list and thank my lucky stars our doctors would dismiss almost all of it as excessive and harmful.
I wonder what the unrevised guidelines looked like...gulp!

The annual childhood checks are also very invasive. A lady called Suzie posted to Dr Bernstein's site a while ago and talked about the degrading inspection of her genitals and anus she endured during her childhood. It was clear from reading her posts she had been psychologically affected by the ordeal.
I wonder whether there is a list for men? Do they need to present for genital inspection every year?
Are they taken to urologists at age 13 or 14?
There also seems to be an attitude that women are more accepting of invasive exams. If there is a need it's one thing, quite another when there is no need.

Elizabeth

Anonymous said...

I had one last point...
I believe a large part of the problem are the annual medical exams starting from childhood.
I don't think they're necessary when you're under 40 or 45.
Most people in other countries see the Dr when they're sick or need an injection etc.

It's only when you reach mid life that most/many people see a doctor for a general check-up every one or two years for blood work and BP test. Nothing as extensive as the US exams.
I think the "tradition" of the annual physical needs to be questioned. The sort of "let's cover every inch of the body" type exams.
These exams may lead to people falling into the habit of having them, needing the reassurance (false or otherwise) and accepting the need and even the excess without question...it also, turns well people into not-sick-yet people.
Even seeing the Dr every year or two varies from person to person. There are some things usually included (BP, pulse, blood tests) and other things that may be included at your suggestion or in consultation with your doctor.

I don't like "lists"...testing all sexually active women of a certain age for STDs or most people for HIV is totally unnecessary....many women are in monogamous relationships.
Being sexually active does not mean lots of partners a year for every woman.
HIV testing may benefit people in high risk groups.
I think the broadbrush approach is a bad way of targeting people who may benefit from these extra things.
Elizabeth

Joel Sherman said...

Thanks for the research Elizabeth. There are two other US institutions which release guidelines for paps, the American Cancer Society and the USPSTF (the US Preventative Services Task Force). They are all somewhat different. For instance, only one states that low risk women do not need pap smears after 65.
American medicine does have a tradition of the annual check up by your family doctor. I'm not sure that there is any hard data to support this being really valuable; it's certainly not cost effective in my estimation though it's often promoted as such. My guess is that an annual exam consisting of a BP check and routine blood work could pick up as much pathology as an annual visit. Don’t need a physician to do that. But we've all been indoctrinated to get an annual physical. Men seem to ignore that advice in much greater numbers than women, likely in part because most women believe they need an annual pap and breast exam.

Sally said...

You need to include fear in your list of the disadvantages of annual exams.
My Californian born sister-in-law knows that routine exams are not something most younger people do here. (and no one has the very thorough exams you have every year in the States)
Younger people see the Dr when there is a need, not for general or extensive gyn check-ups.
Even though she knows all of our doctors can't be wrong and far fewer women have colposcopies, she still feels fearful after 18 months and rushes to the Dr. Her doctor has told her she doesn't need and shouldn't have annual smears and breast exams at her age are not really recommended. The bimanual exam is not part of any general check-up.
After having nightmares about cancer multiplying in her body, we all knew she'd have the American check-up on a trip home this year.
She hates it with a passion....but the fear and brainwashing is greater.
She thinks American women get more cancer because so many have had cancerous or pre-cancer cells removed...I've tried to tell her that almost all of these cells are nothing to worry about and over-screened women are over-treated.
It's clear her mind switches off to the facts and fear takes over...
I really believe many women can't think for themselves and don't trust facts on this subject. When you've been continually told from teenage years that this is a common and deadly threat...the truth can't be right.
Thanks for the great facts...it will fall on deaf ears for most women and others may become angry that you're even talking about these things. It's one of those topics where irrational reactions are very common.

Anonymous said...

I think unfortunately the USA-ers shouldn't assume that things are automatically better abroad; I'm British and was bullied into my first smear test whilst still a virgin (they knew I was a virgin but demanded I have it anyway, and impatiently told me it was painless). I was left crying in pain whilst the nurse ignored me and dug around with the speculum, before giving up and telling me to leave with the muttered "I can't get a sample" - no explanation, no rebook of the test, nothing. I spent years afterwards thinking there was something "wrong" with me physically. Since then I have also been removed without warning from a GP list as punishment for not attending for smears, been accused of lying about my sexual history by a nurse (despite the fact that my sexual history matches my medical records re: contraceptive use etc), and had one receptionist demand to know IN THE MIDDLE OF A BUSY WAITING ROOM (!!) why I wasn't booking in for these intimate examinations.

At no point was I given any information on the actual risk of developing this cancer, the high chance of being colposcopied/biopsied unnecessarily, or the risk of the test missing an actual cancer. Meanwhile our screening authorities wring their hands over the 20% of UK women who don't attend for these tests, unable to understand why anyone would refuse this "simple and painless" test.

Unfortunately since the highly publicised death of TV reality star Jade Goody of cervical cancer, plus the high fees paid to GPs for hitting screening targets, it seems highly unlikely that a sensible discussion of cervical screening will happen in the UK any time soon.

Sorry to ramble on! Thank you for an interesting and thoughtful blog.

Joel Sherman said...

Here's a column written by an anonymous 2nd year medical student, a woman I presume, called 'Why Do Women Think They Need Pelvic Exams.'
I think it summarizes much of the comments and feelings related on this blog.

PM said...

I'm so ashamed to live in a time when doctors have been sanctioned by our governments to treat women like this...to force women to have a very personal exam...one that requires consent...something optional.
All cancer screening is an extra, an option and no more than that...
Are these doctors prepared to guarantee our safety? Are they prepared to compensate us for unnecessary treatment and harm?
If they are making the decision for us or think we have no choice, then why should it end there?

Anonymous said...

Interesting article on ABC News tonight. Thoughts, anyone?

http://abcnews.go.com/Health/OnCallPlusBreastCancerNews/mammogram-guidelines-spur-debate-early-detection/story?id=9099145

Joel Sherman said...

Yes, the USPSTF (preventive services task force) has changed their recommendations today for screening mammography. They now recommend that routine screening start at age 50 and be done every 2 years. The ACS has not changed their recommendation for annual screening starting at age 40.
Once again, the USPSTF feels that more harm than good is done by early screening.
Still no one seems to be putting the emphasis on informed consent and individual choice.
I find it strange that there is so little relative publicity on the overuse of cervical cancer screening when the case is so much clearer.

Anonymous said...

There seem to be 3 different sets of recommendations in the States - one is clearly excessive and the other two, more balanced.
This causes confusion and may explain why doctors adopt an excessive approach. Why not get rid of two and try to stamp out the excess?
I know one set don't recommend yearly pelvic exams before age 40, yet many US women have them from their teens.
I don't trust any of these bodies anyway and doctors tend to carry on doing their own thing anyway. We know the call for fewer smears has been totally ignored by doctors. Endangering your health is acceptable to the profession. These doctors should be prosecuted and made an example of...any doctor doing annual smears should be disciplined and liable for any harm arising from the excess? This is the only way to stop the excess. You can't expect all women to refuse this test...many women feel very intimidated in a clinical setting.

I think you have the best chance of preserving your health thinking more about your health and less about cancer.
I don't agree with cancer screening for all people. If I had a high risk of something, then I'd look for an independent assessment of the test. I asked a family friend, a University professor, working in radiology, whether she'd have mammograms and she said, definitely not! She gave me several references that were very worrying.
Why do our doctor's paint these tests as fabulous and safe, when that is just not true?
I don't trust doctors and tend to see them only when necessary and I always control the consult.
I chose a Dr were the dynamic works in my favor.
If something else comes up, I just say I'm not in a position to agree with that today.
They hate it...but going along with your doctor's advice is simply too dangerous these days and their urgings are likely to be motivated by money, targets or liability and not your health.
Great site!!
Terri

Anonymous said...

We read about over-detection and over-treatment in prostate and now breast cancer screening.
This problem is huge in cervical screening and is barely acknowledged. The usual is for it to go unmentioned and very occasionally, you'll see a small piece on false negatives.
When you read about all of the colposcopies and biopsies that are normal, it doesn't seem to register with anyone...no one seems to care about these women.
It seems to have been swept under the carpet. What we don't acknowledge, doesn't exist...
How do they continue to get away with this? I suppose it's because women walk away from a biopsy, relieved they don't have cancer and have no idea that the risk of that procedure was very high at the outset. Keeping women in the dark has provided doctors with the greatest protection and I guess other doctors are happy to stay out of it.
What women don't know, can't hurt us? What women know, can lead to refusal of the test or us getting sued?

Anonymous said...

Terri,

Do you happen to have those references provided by your University friend or could get them from her again? I'd like to read them and I'm sure some of the other posters on here would as well.

Thanks!

Susanne

Anonymous said...

You read things like this all the time,
"The best cancer screening procedures, according to the U.S. Preventive Services Task Force, are colorectal cancer screening for men and women over 50, and cervical cancer screening (pap smears) for sexually active women. Both procedures have minimal risks or side effects, while the benefit of early detection is well-proven. Both those procedures get an "A" grade."

It always goes unchallenged.
They pick apart prostate and breast cancer testing and serve up the pap smear as the great success story.
Yet the very problems they mention that detract from prostate screening, apply equally to cervical screening - false positives and
over-treatment. We know both of these biopsies are very invasive and both have risks. I accept a prostate biopsy may be riskier than a cervical biopsy - it makes me furious though, that cervical biopsies are readily accepted as minor procedures. We know many women having biopsies will have problems later. Also, the sheer numbers of women having cone biopsies and other biopsies is really alarming and it seems unavoidable with this test. No one seems to mind though and no one suggests it might make this test unsuitable as a screening test.
It seems a few lives saved justifies putting all women through testing and treatment and a certain number being left with problems. Sure it saves a few lives - when you consider the number of smears taken every year and the number of false positives and biopsies, the numbers saved are very small.
There may be a 70% reduction in cases since screening - yet overall those numbers amount to a handful.
Dr, I don't understand either...
Why is the pap smear untouchable and subject to so little scrutiny?
I think many women are sick of the deceit and extreme pressure.

Read more: http://wellness.blogs.time.com/2009/08/11/does-cancer-screening-save-lives-not-nearly-as-many-as-you-might-guess/#ixzz0X6GL4QQQ

Anonymous said...

http://www.msnbc.msn.com/id/33973665/ns/health-womens_health/?GT1=43001

Joel Sherman said...

Here's a quote from this link:
Women should limit themselves to no more than 10 mammograms in their lifetimes." That's apparently part of the USPSTF new guidelines. My wife of course has dutifully followed guidelines up to now and has had about 25 mammograms.
The new guidelines are closer to European practices but will spread confusion. Self examination is no longer recommended but masses found incidentally by women have a much higher chance of being malignant. Does anyone have a clear understanding of what women should now be doing? If so please let me know.

Anonymous said...

The American Cancer Society seem to have no concerns about harming people. It seems their full attention is on saving even one life...who cares about harming 1000's of people, if you save one. I'd be really careful following the advice of this group. It's really unhelpful for them to contradict the expert panel by pointing to an extra life saved here and there and making no comment about the harms.
The last linked article shows the problem with introducing unproven testing. It is then almost impossible to modify the test in any way...even if the test is a waste of time or harmful. Supporters weigh in and confuse women, people with an economic interest weigh in & women become afraid to follow reduced programs or stop testing...they all think, is this about cost cutting?
I think many women will keep having yearly mammograms from 40 despite the changes. The Poll shows 80% or more have voted that way. I stopped because I disliked the first one so much..it was painful and I felt very strongly that squashing my breasts to the width of a pancake was not in the best interests of my health. I'm not surprised to read that this test can cause problems simply because of the squashing of breast tissue and the radiation. If you think about it, why wouldn't it cause injury, bruising and even cause cancer?
Women who rely on magazines and their doctors end up confused and then make a decision based on fear. If you're confused, you tend to keep having the test.
They'd rather risk harm than cancer. If women want the test and it's an informed decison, fine...but when it comes down to confusion and fear...that's bad.
I don't understand either how smears get an "A" rating. It must be because the death rate has fallen. I know other things have contributed to the fall and that screening has claimed all the credit. It doesn't seem to matter about all of the false positives.
Is it the case that the death rate from prostate cancer hasn't fallen since screening was introduced? Otherwise, why does cervical screening get an A rating and prostate is in the grey area?
DMc(Brisbane)

Anonymous said...

My understanding, Dr...
Self-examination has been out of favour for a fair while now. I'd say more than 8 years, but this message has only been made public for the last 3 years. (roughly)
The mixed messages are still everywhere causing major confusion. I saw one women's magazine had a self-examination chart featured recently. These magazines do enormous damage. I think we need to contact our respective Advertising commissions when blatantly incorrect information is posted.
That may be difficult in the States when there are differing views on the same test.
In other countries, self-exam is definitely, OUT.
I know Professor Baum refers to breast self-examination day as Black Friday.
Why?
Because he knows he'll be operating on perfectly healthy breasts in the following weeks or diagnosing ductal cancer with no clear answer for the women concerned...or in other words, dealing with false positives or finding pseudo-disease.
I understand this Day is shortly to be scrapped.
Mammograms are still promoted from age 50 and then 2 yearly, but more and more they're flogging a dead horse. They'll still get a fair number of women showing up...the ones that believe in all cancer testing, the ones that fear cancer more than any negatives associated with testing and women who know someone who was "saved" by screening.
Of course, with the latter group, they won't know whether it was a non-life threatening cancer that was found...the assumption will be a life was saved.
I personally believe mammograms are likely to increase the risk of cancer.
I've read that compression can initiate growth in a non-life threatening cancer and the accumulated exposure to radiation from mammograms over many years is a real concern.
Aside from the large numbers of false positives, there is mounting evidence that many of the aggressive cancers that take your life are missed by screening while the non-life threatening ones are picked up...
Overall, I'm not satisfied that mammograms are a good idea at any age. The States is the only country that recommends screening for women in their 40's. The increased risks and very limited benefits for this group have been well known for some time.

It's definitely a personal decision. I feel hopeful though that at least the information is out there now...whether women choose to accept it or not is another matter.
I agree with the last poster...women have been targeted by extreme and misleading campaigns for years. It will be hard to turn that around...
Dr, your poor wife will be sorry you ever started this forum.
It must be disheartening to read that all of these unpleasant tests she endured for her own good...may turn out to be something else entirely...whether that be unnecessary, optional, controversial or even harmful.

I have been unable to find any clear evidence that CBE's are worthwhile. Most say there is no evidence of benefit at any age.
I did think 2 yearly CBE's instead of mammograms from age 50 was a better option, but the jury is still out on that one.
In the meanwhile, I'll continue to be breast aware.
Isn't it strange that we now feel like we must do something, rather than watch for symptoms?
If we don't self-exam, have CBE's or mammograms, what do we do?
Maybe our ancestors had the right idea...sometimes the only way is to lead a healthy life, stay positive and deal with symptoms.
Elizabeth

Anonymous said...

Where does this leave women who are required to have a mammogram or their doctors won't give them a script for the BCP?
This is a common thing in the States.
Will these doctors still insist on a mammogram now that one set of recommendations has changed?
I doubt it, they still insist on yearly paps and hold the script until you've had it done.
I think it's very poor that women can be told by their doctors that they have to agree to cancer screening or they don't get the BCP. The doctors all know these things aren't necessary for the safe use of the BCP and that these decisions should be made by the woman herself...free of the threat of having her BC yanked...
So much for the rights of American women.

Anonymous said...

I wouldn't think the task force's new recommendation was made on a whim, but most of the responding posters on the news sites are suggesting it was. They all seem outraged and are calling it a political move, a cost-cutting measure or an attack on women. Only a handful of posters seemed to think the new recommendation made sense and had some carefully thought-out things to say on the subject. Those few were pounced upon by the other posters. What I also found in reading those posts was a general attitude that the rest of the world's doctors are incompetent or taking great risks with their patients' health by following less-stringent guidelines such as what the task force proposed. Surely that canb't be the case.

That's what's so frustrating in all of this debate. Anyone who deviates from the status quo or dares to question the value/safety of such exams is immediately met with a flurry of angry responses such as "How DARE you!," or "You'll be sorry when..." or "Ladies, get your tests done!"

Joel Sherman said...

I need to clarify my last post which contained the quote: Women should limit themselves to no more than 10 mammograms in their lifetimes.
I thought from the context that that the statement was part of the formal USPSTF recommendations.
I now believe the assumption was incorrect as I cannot find it on their postings. Maybe the website just extrapolated mammograms every 2 years from age 45 to 65.
It does make a difference as women who get questionable mammogram results are often asked to repeat them in 6 months for a time.
The new recommendations have caused all kinds of controversy. My local paper had an interview with local physicians who are involved in breast care and they all disagreed with the USPSTF recommendations. Everyone knows a woman with breast cancer who wouldn't have been screened under new guidelines. That's not to imply though that the outcome would necessarily been different. I think the new recommendations will remain controversial and may be decided by default by insurance company guidelines. Unlike the ACS and the Ob-Gyne College, the USPSTF has no formal clinical stake in the outcome of the debate.

Anonymous said...

"Unlike the ACS and the Ob-Gyne College, the USPSTF has no formal clinical stake in the outcome of the debate."

Wouldn't that make them less biased? The other groups clearly have a financial interest in keeping things going...

Joel Sherman said...

Yes Anon, that was the point of my comment.
Of course that doesn't mean that individuals on the USPSTF couldn't have biases, but hopefully the board is not biased institutionally.

Anonymous said...

Anonymous said...
"Unlike the ACS and the Ob-Gyne College, the USPSTF has no formal clinical stake in the outcome of the debate."

Wouldn't that make them less biased? The other groups clearly have a financial interest in keeping things going...


I wondered that too, Anon. It seems on the various news sites and internet forums that the folks crying foul the most are those who are somehow involved in the industry. I just wonder how much of it is out of genuine concern for people's health and how much of it is due to the fact that these new recommendations may mean they will see a drop in business. I certainly don't want to imply or believe that all of these healthcare professionals are just in it for the money -- I think a great many genuinely care about patients' health -- but at the same time, I can't help but wonder if financial concerns are coloring some of the responses.

Anonymous said...

The point women seem to forget is that the States is the only country that recommends YEARLY mammograms from age 40. (I think that's right)
All of the countries I've checked recommend 2 or 3 yearly from 50.
I think it's long overdue.
It's finally shaving back the harmful excess. It's very clear the benefits of screening for the 40-49 age group is borderline and the risks high.

This is the same as trying to stop annual smears.
Although annual smears are still recommended for women under 30...which makes no sense at all. It's VERY hard to understand and contradicts medical evidence around the world...you over-treat in very large numbers when you screen young women.
A very high % of their smears are abnormal, simply because their bodies are changing over those years. Cancer is very rare in this age group. The very rare case is often not picked up in a smear anyway...(usually because it's an adenocarcinoma)
I think over-screening women has meant many women having excessive treatment and this makes women think this cancer is common and the testing and treatment saved their lives.
To then say, "you don't need smears at all" or "only every 3 years" to this age group, would cause the same reaction probably...
The US recommendations even seem to say all women should have annual smears from 21...even those not yet sexually active. That is impossible to understand - no other country would suggest such a thing. I would assume a Dr was incompetent if he/she suggested such a thing.

It's exactly the same with mammograms...these mammograms produce lots of false positives and benign biopsies or find pseudo-disease. (you're better off not knowing about)

Your women think this is cost-cutting and taking chances with their health. The fact other countries have never offered screening to women under 50 is probably put down to your doctors being more thorough and competent.
They then see this as a cutting back of services and not an attempt to contain harm and spare them pain and anxiety. Mammograms don't work for younger women and in my opinion, they are a controversial topic even for the over 50's.
Just as the move away from annual smears for over 30's was largely ignored, I suppose the same will happen here...
It IS very hard getting the information out there and changing these things when they become well-established and women "think" they know the facts or have seen the benefit. I blame the medical profession 100% for this problem. The dishonesty and aggressive promotion of these tests has shaped the way many women think about cancer screening. To suddenly change direction and come clean causes confusion, fear, outrage and suspicion. We've been told over and over that cancer is a huge threat to our lives and now the focus is on the harm caused by screening...What? No one has ever mentioned screening as anything but a great thing. We're all now programmed to fear cancer, not screening. (or most of us anyway!)
Elizabeth

Joel Sherman said...

I am reposting this anonymous comment by a foreign speaker to correct some of the typos and remove vulgarity.

I am desesperate!!!!!! Where does that leave those of us that live in a country where PELVICS, PAPs, are MANDATORY for working or going to university????? After 40, you have to have a mammogram, and they do a vaginal ultrasound as well. We have a president who is an oncologist, so he has all that romantic s**t about the disease, plus his vested interest as well(I regret the day I ever voted him), but without going to the gyno a woman cannot get a job, (employees of private companies are out of luck, as well), going to ANY University or play sports either, (just among other things)... What is called "Women´s health and liberation" has been working against us. Somebody has to stop this nonsense.....ALL OVER THE WORLD. HELLO???? SOMEBODY ANSWER???

Anonymous said...

I assume from reading that prostate cancer is a genuine health concern for men, esp. as they age. Yet, it seems that in recent years, doctors and researchers have backed off some from insistence on routine screenings, as it can result in false positives or discovery of so-called pseudodisease. High-risk men are still encouraged to get checked, but the rest of the population seems to not be pressured or frightened into routine testing as we women so often have been for certain things. My 92-year-old grandfather has prostate cancer, but nothing is being done except watching it carefully. His doc says it will most likely never bother him and he will live to a ripe old age w/out any problems.

Why is it that when a panel of medical experts comes to the conclusion that, for some women, yearly mammograms may not be as valuable as previously thought, there are so many people crying foul and saying they are outraged? Why is women's health such a source of controversy but men's health is not?

And forgive the silly question, but why is it that you never see hospitals and medical centers advertising "prostate care" centers or men's health centers as they do for women's diseases?

Susanne

Joel Sherman said...

Susanne, I can only speculate to answer your questions. Women's health is a big industry in the US with many vested interests. Despite the fact that men seek much less medical attention and die younger, there is not even a federal office of men's health like there is for women. So maybe it comes down to the fact that more people profit off women's health than men's. I have already noted that within the past 1-2 years informed consent has been recommended for prostate screening but you never see anything about it for cervical cancer screening.
I have tried to take a role in remedying this situation. I have written a guest article on a very widely read medical blog which has just been accepted for publication. I will link to it here when it appears in 2-3 weeks.

Anonymous said...

Thank you Joel. I fear you may about to be *flamed* to within an inch of your life given the vested interests involved when you do so, but people like you and like my current GP (who has put my needs as a patient above the financial imperative to bully me into cervical screening) help restore some of my faith in a medical service that have previously seemed determined to ensure that I have as little say over my own health care as possible. I look forward to reading the article. Best regards - UK Anon

Anonymous said...

I would like to add my thanks too, Dr. Sherman. Unfortunately, I think many of us posting here have been unable to find such an open, nonthreatening environment elsewhere to discuss our concerns over certain screening practices. For most of us, the message is always should, must, vitally important, etc. etc. and doing otherwise or questioning anything is deemed irresponsible, foolhardy, etc. or even met with threats of "You'll be sorry when..."

As I've mentioned before, my mom died a couple of years ago from brain cancer. A truly horrific experience. Since then, I've become quite terrified of anything having to do with cancer -- perhaps that's a subject to be taken up with my friendly neighborhood therapist -- and have found that the healthcare providers I've run across are either unsympathetic or try to play upon that fear by engaging in what some posters have referred to as "opportunistic screening." It's a shame, really. I think in a perfect world, all docs would provide patients with both pros and cons, but it seems most of us on here aren't getting that from our healthcare providers. Something needs to change!

Susanne

Anonymous said...

I'm not sure where the poster lives, but mandatory gyn exams are not something I'd agree with...
I would find a way to leave the country or speak to a community legal centre (if I couldn't afford my own lawyer)
I've heard some American employers require exams before you commence work. I imagine you could refuse some of the exam and walk away from the job, if they insisted...
When push comes to shove, routine gyn exams are not based on sound clinical evidence.
I feel these things should be easily overcome in the States. It's a country that values rights and has many lawyers itching to get their hands on a controversial case.
Certainly, no cancer screening could ever be demanded. Informed consent is required. Doctors definitely know that...when they're faced with a knowledgeable patient, they cave very quickly.
Pelvic exams are not recommended as a screening tool for ovarian cancer. I think that's true of even the States.

I was speaking to a friend who happens to be an investigative lawyer working in commercial crime. She is trained to actually look and analyze everything with an open mind. She uses cervical screening as an exercise for new recruits. If they come back spouting the Papscreen brochure, they don't get any further.
Her latest recruit walked into her office after a week and said, "we've all been conned"...she got the job.
I think many of you would get a job as well...
Very few people actually SEE and HEAR on this topic. This forum is rare indeed...and therefore incredibly valuable.
Raye

Joel Sherman said...

A brief comment about the 'anonymous desparate's'comment. It's hard to suggest anything without knowing a lot more about the country she is in and the social situation she faces. I have no idea what her best course of action is.
If you post more (to this thread, not the first one) maybe we can make some suggestions.

Anonymous said...

In addition to their paper containing an honest assessment of mammograms, the Nordic Cochrane Institute have produced something on the value of self-examination and routine clinical breast exams.
Their conclusion:
"Data from two large trials do not suggest a beneficial effect of screening by breast self-examination but do suggest increased harm in
terms of increased numbers of benign lesions identified and an increased number of biopsies performed. At present, screening by breast
self-examination or physical examination cannot be recommended."
http://www.cochrane.dk/research/Regular%20self-examination,%20CD003373.pdf

I look forward to reading your article, Dr.
I'm grateful to you for your valuable contribution. Its worried and angered me for years that there is so little discussion and critical review of these routine exams and screening tests. Any criticism hits a brick wall. Given most doctors and politicians accept that screening is a good thing for all women, a call for honesty and balance gets nowhere.
The information released to women IS misleading and incomplete and the sweeping aside of the need for our informed consent IS unacceptable. Far from respecting our right to choose, the offer of screening, has in reality, been a command.

Elizabeth

swf said...

In our newspaper yesterday regarding mamograms:

Cancer specialists say: Ignore the new task force.

Siting the 'fact' that the task force consists of business graduates, insurance companies, and not a single doctor, women in Nevada were encouraged not to put off yearly screening as the task force figures do not reflect the truth in finding and treating breast cancer.
The host of the major news program "Hardball" suggested this was the governments attempt to put women back at risk and therefore a minority voice in heathcare. His (female) guest stated that it has taken 20 years to program women to automatically think of yearly screening and it is dangerous to break that mindset and put the decision making back in the hands of the patient.
She pointed to the fact that as of the task force announcement we are now a nation of 'confused' women who are too scared to make these decisions without their help. Women want the healthcare system to simply tell them what to do and they will do it.

I was flooded with questions yesterday asking my opinion of the task force findings, and my opinion is the same as it has always been: gather all of the facts and information you can to make a personal and informed decision for your own body.

My opinion of the findings really means very little. I am more upset about the amount of women who consider this a conspiracy against their health.
I fear this sort of thing will all turn into an election platform and the goals of releasing options and information will be forgotten.

Joel Sherman said...

Well ladies, it's too soon to declare victory over unneeded cervical screening, but you've scored a major victory. The American College Of Obstetrics and Gynecology (ACOG) have updated their guidelines (they had no choice after the recent paper in the Annals of Internal Medicine). They have reduced the recommendations for screening in young women and made other changes. As almost certainly insurers will stop paying for much annual screening, this is a major change.
What they have not done is argue that women be given true informed consent and the right to refuse screening if they are at low risk. They forgot to mention that cervical cancer is a rare disease in the US and the billions spent on it are out of proportion to other health needs in this country.

Anonymous said...

Thanks for the post on the ACOG update, Dr. Sherman. I read this related article on abcnews.com:

http://abcnews.go.com/GMA/HealthyLiving/guidelines-ditch-annual-pap-smears/story?id=9131632

You should see the responses to it! I think I saw maybe one response in the whole list that sounded reasonable and well thought-out. The majority were from people saying they were outraged, calling it an attack on women, saying the gov't or insurance companies wanted women to get sick and die, saying it was Bush's fault, Obama's fault, the insurance companies' fault, etc. Some even said things to the effect of men's health was more important than women's and that's why these new guidelines were coming out so women would get the short end of the stick. I'm not sure any of them is aware of the changes in regard to prostate screening. Makes me wonder if anyone out there bothers to really truly read these things.

I think some of our educated, thoughtful, well-read posters on this forum ought to jump into the fray on abcnews.com and post some of our research/medical journal findings.

Anonymous said...

..what is ultimately very sad and telling is the utter lack of trust between doctor and doctored..on our side, women who have been lied to, coerced and pushed into screening they don't want. On the side of the ABCNews responders, the automatic assumption that any reduction in healthcare equals a deliberate intention to harm women for political or financial reasons.

Abby said...

Thank you so much for this conversation. I think it's important for every healthy person to know the actual value of routine cancer screening tests and the very real risks involved with them. I highly recommend H. Gilbert Welch's Should I Be Tested For Cancer: Maybe Not and Here's Why.

The sad truth is that women are being coerced to submit to invasive tests with dubious benefits by fear-mongering doctors and a public health campaign that vastly overstates the benefits and understates the risks of screening.

The result is that most women overestimate their chances of getting any cancer, particularly cervical cancer, which is extremely rare. Far too many women are over-treated for "pre-cancerous" conditions of the cervix that would have never caused any problems. And those treatments have very real harms, some physical, some emotional.

I hope more people will start thinking about these issues, and I thank you for providing this forum. I know many women, who are either feeling pressured to take a pap test or are going through the very scary aftermath of getting an abnormal result, will find this conversation very helpful.

Anonymous said...

DR, given guidelines were changed a few years ago and that has been ignored...isn't it very likely that these changes will also be ignored?
I'm from Amsterdam and working in Victoria at the moment in the travel industry. I've needed to see doctors all around the world.
I got such a shock when I needed to see a Dr in San Francisco to get the Pill, that I left with nothing. I was very shocked at the things he wanted to do before I could have the prescription.
I know these things are not done in my country. Your doctors stand-over women and give them instructions, "you must have a pelvic exam or I can't give you the birth control pill and you must have a pap smear and breast exam"...
When I became upset, I was told, "as a woman, you better get used to it"...I mentioned that our women don't need to get used to anything. Even cervical screening is only available a few times in your life and women are free to refuse anything. He said they take womens health very seriously and women have to be forced because they wouldn't have them otherwise.
It became quite heated and I left the surgery. I couldn't believe this doctor's attitude. He was saying that I had no choice in any of these things and he had the right to force me for my own good. I thought he was a nut and others would be different...no, all the same.
I don't see American doctors and have sent a circular to all my colleagues. I haven't had any issues with other doctors...some have strongly recommended screening and when I say we are not even offered screening until we're 30, they drop the argument.
Awareness and being firm is the key here. As a Dutch woman, I know all of this is nonsense and that gives me the confidence to stand up to them, others think this is the only way. I personally think if women don't want screening, that is their right. Men choose not to have screening and I don't hear anyone saying they should be forced. We are back in the dark ages if people think it's fine to force women to have medical exams and tests. My privacy is important to me and I will decide what is done to my body. Isn't it a source of shame that the medical profession does not agree with me? I have more respect for our doctors now. My doctor would not be too concerned if I skipped screening altogether. She has never exaggerated the risks to me.

Bella said...

One thing I've wondered - is it just a coincidence that during the same years that cervical cancer became less common, which is always attributed to the pap smear even though there's never been a randomized controlled study on its efficacy, the number of hysterectomies went way up? With so many women in their thirties, forties and fifties getting their cervices removed (often unnecessarily), is it any wonder that cervical cancer rates fell? Why is the decrease always attributed to pap smears with no mention of the increase of hysterectomies?

Anonymous said...

Good point, Bella!
In fact I saw a chart that showed cervical cancer was in decline before screening was introduced and other things were mentioned....increased use of condoms during the Aids crisis, the increase in hysterectomies and other things. (I've forgotten at this stage)
There was also a study in Canada (from memory) - one province had screening and the other didn't...cervical cancer fell by the same rate in both provinces, and the screened women had the added problem of over-treatment.
I'll look for the references.

One thing that does frustrate me...even though there are changes to the recommendations, doctors tend to make their own rules. This is especially true of the States. The Society of ObGyn's said some time ago that pelvic & breast exams and smears were not required for the initiation or continuing use of the Pill. Almost all US doctors insist on all of these things or they refuse to prescribe the Pill. They have effectively boycotted access to the Pill, completing disregarding the recommendation. It seems doctors have decided to make it impossible to access the Pill so they can force these exams and test. The only way is to report these doctors to the Medical Board and ask them to take action. Agreeing to their demands keeps this problem alive.
Planned Parenthood are the only people who provide access without these unnecessary or optional extra's. Not every woman has access to a PP office and some women are unaware there is an alternative. These demands are distressing and harmful and IMO, contribute to women taking risks or using less effective methods of contraception. IMO, it partly accounts for the high rate of teenage and unplanned pregnancy.
I feel many women around the world have had enough of this...this unethical boycott should have been broken down many years ago.
Women in the UK and Australia also face pressure to screen and are fed misleading and incomplete information. The first step in these countries is to stop paying doctors to reach targets and to force doctors to obtain informed consent after providing full and complete information. Women (like men) have a right to refuse cancer screening or routine exams.
Elizabeth

Anonymous said...

http://std.about.com/od/prevention/f/papocp.htm

This sort of article makes me want to screen!!
You see it everywhere...women would avoid pap smears and pelvic exams if they could...so we have to force them.

Can you imagine anyone suggesting that men hate rectal exams so we'll force them when they come in for their flu shots?
How can people think this is a professional way to treat women and even be openly proud of the fact? We know what is best and you have no rights.
These people clearly have no regard for consent or professional ethics.
It is openly saying women can be treated like objects. We can trample over your rights, manipulate, deceive and hurt you.
Once the responses were as expected...disappointment, sadness, questioning and fear.
Now women are starting to get angry and recently I saw an educated woman blast a doctor about her attitude. We need more of that...much more of that...
I don't go to the doctor anymore.
I've had it with doctors. I will not accept treatment and attitudes like that. It would not be tolerated in any other walk of life or setting, why should doctors be above professional ethics and the law?
That's Me Done

Anonymous said...

I don't allow my Dr to just do whatever when it's not something absolutely necessary, I pass...
Cancer screening falls into that category.
I have been on the Pill for 14 years and have never had breast, pelvic, rectal exams or screening.
If you know your rights and make that clear, you'll have no problem. No doctor has ever refused me the Pill because THEY know, I know my rights!
My husband is a pathologist so I need only walk into his study to get my information. We do need to change the lack of respect doctors have for women. All women should have a choice about these exams and tests. Just because you need the Pill doesn't mean the doctor can just examine your breasts and do a pelvic, rectal and smear. They all fall into the screening and preventative medicine category and only YOU can decide whether they are things you want to have...
I also think women having these things should be handed information on the next step which will happen sooner or later...my friends that lie there and allow it all to happen have a multitude of tests, ultrasounds, biopsies and treatment chalked up...all for no benefit at all and two now have cervical stenosis through over-treatment when they were in their late teens...but it probably paid off the doctor's yacht or paid for the renovations.
I have zero respect for doctors who promote this excess and hurt so many women...I have major respect for doctors who try to change the system and respect our right to make choices when it comes to preventative medicine.
Why are these doctors so rare these days?

Joel Sherman said...

Well, that's one good solution for getting doctors to respect your wishes. Marry one!

Anon asked before if I think the new guidelines will be followed. Yes, I think they will, but it will be helped immensely by the fact that insurance companies will refuse to pay for annual paps in low risk women. Medicare already has taken that step in older women.

Anonymous said...

Hi, I'm Rick and I hope you don't mind a male contributing...
I let my ex-wife down badly. I did what many of us males do, left birth control up to my wife.
I really had no idea what was being demanded of my wife...none at all. I did know my wife became agitated and tense leading up to appointments and then started to stockpile pills. We'd go months without sex to make the Pills last. I really had no idea what these exams were about and assumed like most men, that they were things they needed to have. We tend not to ask questions about all of that. I had no idea they were preventative things and cancer screening that was being demanded in exchange for Pills. If a doctor did that to me, I wouldn't accept it and would know that it was wrong. If I had taken the time to speak to my wife, we could have found an alternative. I don't know why I didn't ask or offer to help. She left me 3 years ago now...I think resentment built up and having treatment again for pre-cancer finished off our marriage. She said all along all of the exams and tests were just to plump up her doc's bank accounts and women were used, humiliated, hurt and degraded just because they needed pills. Her doc held the script until she had the exams and test every year. After the first treatment, the Pills were only provided for 6 months and then she had to front for more exams and tests. She says and I agree with her...that all of these exams and tests actually ended up hurting her...spiritually and physically. The new guy has had a vasectomy and she's now rid of doctors and their demands. I let her down and exposed her to harm. I'll never do that again if I'm lucky enough to find another partner. Men need to support their women and stop these doctors demanding them to have things in exchange for birth control. We wouldn't let doctors treat us that way and it shouldn't happen with women. These doctors are taking advantage. If women don't want cancer testing then they should have the same rights as men...to refuse. That has never happened and I don't see any progress. How can we say women are equal in all ways, yet demand things that usually require our consent? That makes them citizens with reduced rights and everyone seems to be content with that situation. I think we've forgotten what living in the free world is all about...it's about choice and human rights. Our women need to have their rights restored. When I read that a doctor held her Pills, risking pregnancy with all its risks, until she agreed to an inaccurate test for a rare cancer and pelvic and breast exams that seem to be of low value and should therefore be nothing more than optional....it makes me furious. Thank you Doctor...for your part in this fight.

Anonymous said...

Rick, great to hear from a male.
I think your experience must be common in the States. It is definitely something that needs to change. It surprises me that it still continues...
If women took action, I'm sure it would stop very quickly. Doctors in the States seem to get away with very unethical conduct when it comes to cancer screening. Rights are a big thing in your country, so it is surprising they have been blatantly disregarded in women's health.

I fear the scare mongering will deter some women from having fewer smear tests and mammograms. I've seen interviews with a few US gynaecologists saying they won't be changing their practice. Their comments make no sense to me and go against the medical and clinical evidence.
They have all mentioned their "fears" that they won't see women every year, if they don't need smears. I think that is their real fear - if they can convince women they still need annual smears, they can still get away with the annual gyn exams as well.
It seems to shout, "we'll lose lots of money otherwise" to me.

The health checks they're talking about are pelvic, rectal and breast exams. These exams are not even recommended in many countries, so they can hardly be incredibly important.
Certainly, pelvic and rectal are not recommended in most countries. I think Germany, the States and Argentina are the only countries I'm aware of...anyway, at best, they should be optional.
The evidence of benefit is lacking IMO, and there is some evidence of harm. They are not recommended as a screening test for ovarian cancer in any country. (as far as I'm aware)

Breast exams are a bit different. Some women will feel happier having a breast exam every year or so from 40.
I've been unable to find any evidence that supports the value of routine breast exams in older women and certainly nothing for younger women. They seem to have no effect on death rates, but cause lots of biopsies.
I think breast exams should be optional as well and all of these exams should carry a warning -they are optional because they are of no or little proven value, but do lead to unnecessary biopsies and other tests.

It makes the warnings of these doctors sound hollow and self-serving. It's clear they feel their "hold" over women is slipping...
It is surprising that these comments haven't been challenged...one older gyn said he'd still test teenagers, as he'd seen quite a few that had serious problems in the past. The facts speak for themselves - young women produce very high numbers of false positives and have lots of unnecessary and harmful treatment....the risk of cancer in a very young woman is close to zero.
So....what exactly are these doctors talking about? I don't believe they're incompetent...perhaps, it's paternalistic well-entrenched practices and they are blind to facts and evidence or it's about money and losing their powerbase over women. Perhaps, it's also defensive medicine, but surely there is safety in following reduced recommendations?
It is disappointing that these changes may have nil effect because of these dishonest statements. These doctors MUST know the facts and evidence.

I understand some US doctors are now questioning the need for the annual gyn exam and perhaps, these doctors fear their workloads being halved in the future.
Our gyn's only see women who are pregnant or are referred by their GP with a health problem. The practice of having a gyn as your primary healthcare provider is a bad one, IMO...it's most of the reason for the excess and probably partly explains your HUGE hysterectomy rates.
Elizabeth

Anonymous said...

Smart women!
There really is no case for routine pelvic and breast exams before starting hormonal birth control or at any other time.
I agree, there is evidence of harm. I think cervical screening has been overplayed as well. The risk of this cancer is so low, rather than trying to screen everyone, I wonder whether targeting high risk women 3 or 5 yearly from about 25 would achieve better results. It is without doubt that more than 99% of women won't benefit from smears however, all women run the risk of colposcopy.
I do wonder why more women haven't worked all of this out. Perhaps women are more trusting.
There are many journal articles covering this subject matter. The pro-pelvic and breast exams sites are usually attached to a health clinic or doctor's rooms, hardly surprising, vested interest and all that...
Here is one article I found quickly.
It talks about these exams generally and in relation to women starting or using hormonal birth control.
I do wonder how doctors and specialists can say these gyn exams are extremely important, when that is clearly not the case. It does mislead women and even causes unsatisfactory outcomes. I think it must be an ordeal for many women.
I don't think these exams should be done routinely. They are invasive and difficult for most women and it's unfair to suggest they are not only important, but essential to your good health. I have never agreed with the dishonest marketing of routine gyn exams. I think cervical screening should be optional after full disclosure and recommended for high risk women.
Most of these invasive routine exams could be discarded.
I doubt mammograms are a good idea either...or at least, not before 55 and then only 2 or 3 yearly...
It is time to reign back the excess and show some respect for women.

http://humupd.oxfordjournals.
org/cgi/reprint/dmh031v1.pdf

Joel Sherman said...

Here's an article from the AMA news which reviews updated guidelines for screening for breast, cervix, prostate and colon cancers. It's certainly an improvement but we're not all the way there yet.
Note how for some strange reason, discussing the options thoroughly with each patient is stressed only for prostate cancer. What rationale is there for limiting informed consent to prostate cancer?

MER said...

An interesting opinion piece in the L.A. Times today (23 Nov)about this issue.
http://www.latimes.com/news/opinion/commentary/la-oe-love23-2009nov23,0,1732820.story

Joel Sherman said...

My post has just been published on KevinMD medical weblog. This is a widely read and monitored blog. Could help make a difference.
Let me know what you think. It will be interesting to follow the comments. Only one so far, but it is favorable.

Anonymous said...

Thanks for the post, Dr. Sherman. It appears another reader has posted a response, this time extolling the virtues of yearly gyn testing.

I noticed that your bio at the bottom of the page says you are a cardiologist. I read somewhere that cardiovascular disease kills five times as many women as breast cancer and many more than cervical cancer. Yet, we women never seem to hear about that from our docs. Ever.

My paternal grandfather died of a heart attack and my maternal grandmother underwent bypass surgery about 15 years ago after several months of being misdiagnosed with other ailments because Drs. didn't think of the most obvious. She takes a variety of medicines now and goes for regular checkups with her cardiologist in order to stay healthy. My docs have never said anything about watching cholesterol, exercising properly, following a lowfat diet or not smoking (I am a nonsmoker) or any other heart-healthy habits. Not a peep. But you can be darn sure that the subject of gyn exams is ALWAYS brought up at every visit. Something's not right about that.

Joel Sherman said...

Thanks Anon. Actually my first draft of that article did state that regular screening for heart disease would save far more lives than pap smears. However I had to keep the post short (it was already longer than the moderator wanted) so I eliminated the comment.
In truth I believe that cervical cancer is the only rare disease for which universal testing has been recommended.
Ladies if you want to have your voices heard, you should consider commenting on my post on KevinMD blog. It is far more widely read than this blog.

Anonymous said...

Dr Sherman, what an amazing article. Thank you for helping women around the world. If you google, "Informed Consent and Pap Smears", your article appears...not a lot else.
Isn't it strange that something that seems so wrong to many of us has passed by so many people?
This is about respecting our rights. It does seem odd that so many women seem to have accepted that doctors can make the decision that the benefits justify the risks and informed consent doesn't apply...
They don't even need to tell us about those risks.
I sometimes feel very alone in my concern about this testing and the pressure...its like doctors feel they can boss us around and be rude to us if we don't go along with them. I even had a doctor call me a stupid girl. All I asked was why she didn't think I had the right to say I didn't want that screening test. Is that fair?

Anonymous said...

Interesting chat going on here as well on the subject of screening/consent (mostly mammogram/child birth with a bit of cervical screening thrown in):

http://pandagon.net/index.php/site/comments/less_boob_squishing_seems_like_a_value_add_to_me/

Joel Sherman said...

All of you should read my original post on Kevinmd.blog and follow the comments but I am reprinting it here:

Informed consent is missing from Pap smears and cervical cancer screening

November 23, 2009

by Joel Sherman, MD

The American College of Obstetrics and Gynecology (ACOG) has just revised their guidelines for Pap smears under some pressure. This resulted from an Annals of Internal Medicine article which documented that only 16.4% of gynecologists followed the College’s prior guidelines. Most did more screenings than indicated, the worst record of the specialties tested. But the ACOG still recommends that nearly all women obtain regular screening at intervals of 1-3 years.

The facts are that cervical cancer is a rare disease in the US, a point which is never made. The American Cancer Society (ACS) predicts that there will be just over 11,000 cases in 2009. There will be nearly as many cases of testicular cancer, 8,400. In comparison both breast and prostate cancer are just under 200,000. Most women have been led to believe that cervical cancer is rampant and they need yearly screening to prevent it. Testicular cancer however, is rarely mentioned. Most physicians don’t even bother to recommend that young men self-examine.

Cervical cancer was once more common in this country and that accounts for some of the disparity. Pap screening has helped reduce the incidence, but far more is now known about the disease than when the Pap smear was introduced. Cervical cancer is in essence a sexually transmitted disease (STD) caused by the human papillomavirus (HPV). Thus any woman can estimate her personal risk. It’s high if a woman has had multiple sexual partners. With prior negative Paps it’s low if she abstains or if she is in a long term mutually monogamous relationship. The newer HPV DNA test will further increase safety.

For comparison’s sake, HIV (AIDS) is an even more dangerous STD with a five times greater incidence than cervical cancer. Yet no one ever suggests that everyone be tested for HIV, and there are laws in many states restricting testing. Testing is suggested only for those at risk, but this tactic is never used for cervical cancer.

I have seen a spontaneous outpouring of sentiment from women who are angry that the facts on cervical cancer have been hidden from them. They are pushed into getting Paps, but never told the pros and cons of screening. Never mentioned are the high incidence of abnormalities that resolve spontaneously, negative biopsies and colposcopies. It’s an uncommon doctor who even advises that every 2-3 year screening is considered appropriate in low risk women. My wife has had about 45 negative annual Paps and still her doctors haven’t said she can skip any. There are many recent recommendations suggesting that men be carefully told the options concerning prostate screening. We are just beginning to see that for breast cancer screening. But for cervical cancer screening there has been near silence on the issue.

Informed consent on cervical cancer screening is completely lacking in this country. Women are told that they need Pap tests, but rarely told if they might not need them or asked if they want them. The ratio of negative biopsies and colposcopies to cases of cervical cancer is very high given the rarity of cervical cancer. If women are given brochures, they are for the sole purpose of convincing them to get regular testing.

The negative aspects of mass cervical screening are never mentioned. Women should be given the facts and allowed to decide for themselves based on their individual risk benefit ratio whether or not they need regular cervical cancer screenings. The ACS and the ACOG could do a real service by providing pamphlets to providers’ offices that fully explain both the pros and cons of testing. Then let each individual woman decide for herself.

Anonymous said...

"Then let each individual woman decide for herself."

It's possible....you may be the first doctor in the entire world to say something like that...
Your specialty may be cardiology however, with one article on informed consent and smears, you have offered hope to a lot of women. (and men)
Everything presents screening as a given...you even see articles entitled, "How to reach unscreened women?"..."Women are skipping their life-saving smears"...
The message is very clear....there is only one, women must have smears when demanded of them. We're not entitled to anything in the way of information and consent is irrelevant...it's all about coverage and screening is judged as effective if 70% or more can be screened and there is some reduction in the death rate. There are no penalties for bad outcomes or breaching ethical rules regarding informed consent or even, consent. We pay our doctors bonuses when they screen a high % of their patients and this encourages a lack of respect for informed consent.
Sadly, there is very little discussion in Australia. Women are over-screened and a high percentage will have cervical biopsies. We are subjected to the advertising campaigns and other propaganda as well. I hope your article is picked up by an Australian site. Progress has been made in the UK and things are being discussed in the States...not much is being said down here apart from aren't pap smears great. We have had some critical review of mammograms. Informed consent and cervical screening is totally lacking in Australia as well.

Anonymous said...

Thank you Dr Sherman for the information from Mr Rouse. I'll get someone working on some charts and graphs.
I think we need you in Australia, once you've finished your work in the States. I understand US doctors strongly recommend annual routine gyn exams starting from teens and most doctors still do annual smears. The widespread denial of birth control until you have all of these exams is also unique to your country.
You have your work cut out in your country for a fair while. Thankfully, we don't have those additional problems.
Still, we need some ethical voices in Australia.

I googled informed consent and pap smears and added Australian references only and NOTHING...
We've never heard of informed consent down here, not as far as pap smears are concerned anyway.
Women are over-screened and over-treated and our doctors are getting away with it. We even screen from 18 years old, if women are sexually active, knowing the damage we're doing to their young bodies. A frightening percentage of smears are abnormal and these girls and young women are referred for treatment when our doctors know these changes would regress on their own, over time. We recommend 2 yearly screening, again, knowing we'll end up over-treating for no benefit at all.
It makes zero sense to me.

I've written letters to the Health Minister, but the government pays our doctors financial incentives to test their patients.
They clearly have no respect for informed consent. I've never seen any risk information in this country. I think it will take media coverage to get things rolling here. I've written to a couple of newspapers and a current affairs program.
I don't think women get the sort of pressure we read about in the States or the UK, but I may be wrong about that...
I've made my feelings clear and have the references to back it up. I do get tired of defending my position though...
I should stress I'm very low risk.
I've read everything I could get my hands on over the years and this test never got close to an approval rating for me. I stress, for me.

It disappoints me that almost all women, even educated women, have no idea what they're buying into with this screening. It so often leads to biopsies or LEEP. I've supported and comforted many friends and my sister over the years after their "abnormal" smears and treatment. It breaks my heart what we do to our healthy women and all for something so rare.

I can only hope for change and I'm so relieved this is not part of my life. Why do I care what happens to other women? I feel a responsibility to women who are unable to defend themselves and find answers on their own. Our doctors do not have their best interests at heart or they would respect informed consent.

Your article is worth framing and as rare as a 10 kilo truffle. I'll bet there are a lot of doctors who have never even put informed consent and cervical screening together.

I hope your article causes much discussion, makes women think and makes doctors feel guilty, uncomfortable, ashamed or more aware.
Thank you!
Sienna

Joel Sherman said...

I'm still catching up on older posts. On Nov 20 'That's Me Done' posted this link to a site 'explaining' why all women need to be forced to get an annual Pap to get the BC pills.
The presumption and condescension of the article are amazing. 'I know best, do as I say' is the attitude. And this article is from a woman no less.
I will try to discover what the actually latency of an HPV infection is. In other words, how long can it take after initial infection to develop high grade cellular changes (CIN 3) which can be termed precancerous? I'm not sure it's clearly known, but it would seem that 3 years of negative Paps are enough to put a woman in a low risk category by the ACOG's own guidelines.

Anonymous said...

That article should never have been approved for publication.
It is totally offensive and makes me very angry.
I think that sort of thing should be stopped.
We force you, because you wouldn't have it otherwise....hello, it's a cancer screening test! It's my right to choose not to have the test!

We use our positions of authority to force you to have optional cancer screening. We acknowledge cancer screening and birth control are unrelated...but we'll hold your Pills, until you agree.

Can you imagine that being a satisfactory article on any other topic? The notion of forcing patients into cancer screening, abusing your position of authority, the paternalism, arrogance and complete disregard for informed consent. These doctors are happy to boast about it....look at us, we can force you!
The Medical Board thought this article was fine to publish...where are their ethics?
It gives you a good idea how they feel about women and informed consent.
You never see articles like this about men and cancer screening. Yet this sort of article is quite common.
There is a photo of the Medical Board on the website - all smiling away...incredible that not one considered the article totally out of line.
They are a poor excuse for a Medical Board.

Anonymous said...

I know doctors study medical ethics at Medical School and I assume that covers cancer screening and informed consent, so why are these things forgotten in practice?
Looking at that article you've linked, Dr.
If I used my position to force someone's permission or consent, that would be unprofessional conduct and I could face the Standards Board. Why are these doctors so confident in their breach of ethical standards and lack of respect for informed consent?
These doctors sound untouchable...are they?
Cancer screening is starting to frighten me. Women know what it's like to fight for their rights on a few fronts. I found this response over at the Dr Kevin MD blog under "Not all screening tests lead to early, better treatment"....
Here it is...comment 3
"Yes, they do pretty much demand everyone be screened in Germany. If you choose not to be screened they wanted you to go to medical counseling and you will be requested to pay more in taxes to contribute to the medical fund"

You must go to counselling and pay more tax if you choose not to have cancer screening.
I don't have cancer screening of any sort. I have concerns about all screening and I'm not high risk for anything but heart disease. I have my blood pressure checked every year and have blood work.
If I lived in Germany, I'd be paying more tax and in counselling just because I don't want cancer screening.
It seems more and more these things actually become unwritten laws. Penalized for exercising my right.
I have real fears about breast screening...to think their women have no choice.
I know German woman also have annual gyn exams from early teenage years including pap smears.
I would have real problems if I lived in Germany or the States.
Dr, Great article on Informed Consent and pap smears.
Grace

Joel Sherman said...

As I suspected would happen, my article on KevinMD.blog has been linked to by several other blogs including the Wall Street Journal health blog.
It may plant the seeds for wider recognition of the issue and eventual improvement.

Anonymous said...

WSJ - Great news!
Dr, you have no idea the huge contribution you have made with just one article.
I'm not sure whether you're aware of the ObGyn.net site. This site is full of patronizing and paternalistic doctors. There are so many posts I'd like to show you that have almost made me feel physically sick.
Lots of women fight this pressure to have gyn exams. They are healthy and just need reliable birth control. This means they are at the mercy of doctors like this...
I saw one doctor asking his peers how they deal with a 27 year old virgin who wants birth control. He decided to do a visual inspection and a rectal exam. I was shocked. How could any doctor get away with doing those things to a healthy young woman who just needs birth control? I know any UK doctor doing something like that would find himself/herself at the Medical Board. His peers just said they wouldn't bother on the first visit, but "give her the works" when her 6 mthly script ran out.
The disrespect these doctors have for female privacy shows this problem is deep and well established. Informed consent wouldn't matter to these doctors.
I can't find anything at all that says these sorts of exams are needed for the Pill. All of these exams are more for women with symptoms or health issues. I wanted to draw it to your attention as you seem to be the only doctor who cares about the privacy and rights of women.
This is a link...there are many posts about compulsory gyn exams and birth control.
http://forums.obgyn.net/womens-health/WHF.0308/0792.html

Anonymous said...

When doctors feel confident to make rectal exams and visual inspection a pre-requisite for the Pill in a healthy woman, we're in serious trouble.
Doesn't that mean any doctor can demand any intimate exam when a woman needs birth control?
That means there are no checks or measures. If you made a complaint, I guess you wouldn't get very far because accepted and widespread practice probably gives these doctors great protection.
I'm sure a few doctors must take advantage of young women when they have this unchecked power.
I find that terrifying.
I would have thought demanding gyn and rectal exams could be a police matter. Especially when there are no recommendations for these exams at all. I looked at a few sites and couldn't find a word. It seems clotting and blood pressure is the major concern. I have no idea how a visual inspection and rectal exam could be justified. I guess that's my point...it seems these doctors don't have to justify anything. I think this is a misuse of a position of authority.

Anonymous said...

Sorry...one last thing.
A lot of the advice given on that site is incorrect. I've read doctors saying pelvic exams and smears are needed in virgins to pick up vaginal, cervical and ovarian cancer.
I've read on a few medical sites that the pelvic exam is not recommended as a screening test for ovarian cancer. (virgin or not) Vaginal cancer and cervical cancer are caused by HPV virus or at least you need exposure to be at risk. A virgin is most unlikely to have been exposed. Vaginal cancer is so rare that smears are not recommended to screen for it. Virgins are not screened in other countries.
I think that site is full of exaggerations and lies that are designed to scare women and keep these doctors busy.
It worries me that many women may rely on this "advice" to their detriment.

Joel Sherman said...

I emailed Angela Raffle sometime ago asking for references and she has responded. Here's most of what she said:

Cervical screening at a frequency of greater than 3 yearly is a fairly low-value use of a woman’s time and of healthcare resources, as is continued screening in low-risk women beyond 50 years of age. Attached are two papers, and I have pasted the summary box from the main one below. The other was published as an editorial in the BMJ BMJ 2004;328:1272-1273 (29 May), doi:10.1136/bmj.328.7451.1272

I have co-authored a fairly readable book on the whole subject of screening which does address all these questions http://www.amazon.co.uk/Screening-Evidence-practice-Angela-Raffle/dp/0199214492

And it is now available online as part of Oxford Scholarship Online. And if any of your bloggers are really interested then they can, as of next Wednesday, just visit the Health Knowledge website and look at the first couple of Chapters (you need to register but its entirely free) of the Interactive Module on screening. The bits relevant to the blog topic are at 16.20 minutes in Chapter 2 where we show the balance of harm and benefit (and cost) for increasing frequency of cervical screening, and also 8 minutes on in chapter 2 where we talk about the over detection problem in breast screening.


She also included a graph which will not redisplay in the comment section but the message is that annual cervical screening will pick up 93.5% of cervical cancers and every 3 year screening will pick up 90.8%, a trivial difference. Further the percentage of false positive tests over a women's lifetime approaches 100% for annual screening but falls to 50% with screening every 3 years.
She also sent me 2 attachments which I cannot easily post here. However if any of you want them I can email them to you directly. My email address is given in the 'view my complete profile section.' The names of the articles are:
BMJ outcomes paper.pdf
8millionalifefv.doc

Anonymous said...

This is really shocking and makes me angry, upset and confused. It seems everything we've been told about this cancer was designed to scare us into screening. The facts don't back up what doctors have been telling us for years. I can't believe our health, modesty and rights have been disregarded for something that appears to have always been uncommon and is now rare and with a test that ends up sending almost everyone for cervical biopsies. Putting your patients needlessly through biopsies of this intimate sort is cruel and fraudulent.
I thought there were laws in place that prevented false and misleading statements by professionals and companies...yet that doesn't seem to happen with our health care. All of these messages are either plainly wrong or styled to fool women.
This is wrong, very wrong.
The really shattering fact, not one doctor blew the whistle and went to the papers, no one tried to warn women...they all played this evil game. We were all entitled as adult women to have the facts and decide for ourselves whether screening was a good idea for us.
It seems doctors and politicians pay lip service to our rights, while all along do this sort of thing to us behind our backs.
Womens' "health" care...sure!

Elaine C

Joel Sherman said...

Here's a UK article trying to convince women to get cervical screening. I find the article interesting on several fronts. It gives the statistic that 4.4 million women are 'invited' to screen every year in the UK. Of these 24,000 will have a seriously abnormal result, an incidence of near 0.5%. 2,900 women are diagnosed with cervical cancer each year in the UK, an incidence in proportion with the US experience. The general UK screening guidelines are still more liberal than the new US guidelines: start screening at 25 and repeat every 3 years (I assume for low risk women). From age 50 it's every 5 years till 65. No screening is recommended after that.

Anonymous said...

It's 3 years from 25 for all women, low and high risk. The only exception would be DES women and probably women who've had recent abnormal smears or treatment.

I know they wanted to stop screening women at 50 and several doctors, including Angela Raffle, were disappointed they decided to continue to screen 5 yearly. It's a poor use of funds and no one enjoys these exams.
They still won't mention to these women how unlikely it is they'll benefit and leave the decision to them. These discussions never include women.
Some doctors felt 5 yearly from 25 (and some thought 30) was enough. There are European countries that have screening from 30 and 5 yearly to 50 or 60 and they have low rates of cervical cancer.
It's clear women have been over-screened and exposed to great risk from false positives. Women were never told about that risk or asked whether it was acceptable to them. In fact, anything that might cast a negative light on this testing is not released to women.
I'm really not sure why it's fine to make up "facts" for cancer and screening tests for women and hold back all the risks.
Even now with the backtracking to "contain the harm", I've heard no one say that senior officials and advisors should face an investigative panel or prosecution. It seems we should be grateful for the deceit. In any other situation, where thousands of people have been misled and harmed, there would be serious consequences. I don't see why this should be any different.
It's clear women have responded to the critical comments and research about the risks of mammograms and are choosing not to attend. I'm sure more women would do the same thing with cervical cancer screening. (if they knew!) The risk of this cancer is much lower and the test has just as many negatives.

It seems no one is prepared to jump on the promoters of screening who use lies and their own set of "statistics" to deceive and frighten.

When the chance of getting this cancer is low (close to minute for low risk women) and the risk of having a false positive and treatment very high, women must have the facts, the real ones. Those sorts of odds make it unethical not to allow us to make the decision.

I'm sure many women still "think" this cancer is and was a big problem and that this test is accurate, after all, that's what we've been told over and over again. No one corrected these "facts".
Now to find it's not cancer that's the problem, but an unreliable test that sends huge numbers of healthy women for treatment and biopsies.
No wonder they don't want the public to know about this...can you imagine anyone finding this an acceptable way to detect a small number of women?
No informed consent and often, no consent at all (when screening is a requirement for birth control or women face intense and sustained pressure and psychological tactics), a set of "facts" that are not even close to the truth and tactics used to scare and overwhelm the rights of women.

When I realized 10 years ago, my own minute risk of this cancer and the very high risk of treatment, I discontinued screening. The attitude of the doctors I've seen over the last decade makes it clear not one has any respect for informed consent or is prepared to even acknowledge the real facts behind this cancer and testing.

Money and politics should not shape screening tests for women and doctors should not be permitted and encouraged to use dishonesty and unethical practices to recruit women.
Thanks for your article, Dr.
A glimmer of hope...
Bernadette P

Anonymous said...

http://experience.patient.co.uk/discussion_list.php?d=213

UK-centric board here on cervical screening for anyone who wants to drop by and comment...

and Dr Sherman, thank you for your continued help with all this. :-)

Anonymous said...

Another interesting article on one of the recent hot-button issues in women's health:

http://news.yahoo.com/s/hsn/20091201/hl_hsn/mammogramsmayboostcancerriskinhighriskwomen

Thoughts, anyone?

Joel Sherman said...

Thanks for that link.
It's a scary thought that mammograms may increase the cancer risk in the very women who need them the most. Don't know if breast ultrasounds or MRI’s which give no dose of radiation are an adequate substitute.
It will probably take some large scale retrospective studies to definitively answer the question of the safety of mammography in high risk women.

Anonymous said...

Interesting this came from a Dutch research team.
The only doctor to ever level with me on cervical screening was a Dutch doctor.
She asked about my sexual history and my husband's past and a few other questions and then explained the risks of testing versus the risks of no testing.
It was really helpful and has given me both the confidence and information to defend myself to other doctors. I'd love her opinion on breast screening. Unfortunately, she returned to Amsterdam last year.
No chance of finding an honest assessment here...our doctors are more concerned about targets, than advising their patients of the upside and downside of screening.

Joel Sherman said...

Here's a relatively balanced view in favor of cervical screening from an American gynecologist. I'm sure most of you are familiar with the argument that pap smears unquestionably do save some lives. He of course does not bring up the question of informed consent and coercion. But his last paragraph is telling:

Last but not least, another problem is that both of these recommendations send the wrong message to women: Doctors have been trying to convince women to undergo cancer screenings for years. Now some women may think, "Hey, maybe we don't really need it." Those who skim the headlines may believe they no longer need to be seen for an annual gynecological exam where other abnormalities besides cervical cancer are assessed, or they may think they can skip medical screenings altogether, especially if they are not covered by health insurance.

I can't help but wonder how heavily gynecologists depend on annual routine screenings and exams to make their living. Also note that the website of the above post is ‘dailyfinance.com.’ Compare this to prostate cancer. Urologists don't have a campaign to get all men over 40 to come in for annual prostate exams which would undoubtedly save more lives than cervical cancer screening though with significant harm also being done.

Anonymous said...

Considering doctors in other developed countries don't recommend annual or routine gyn exams at all, it all sounds a bit hollow and self-serving to me.
I only started annual exams in my 40's when I felt it was important to monitor my heart health. My father died from a heart attack at 68 and my mother has a permanent arrhythmia, diagnosed in her early 50's. I've lost both sets of grandparents and several aunts and uncles to strokes and heart attacks in their late 50's through to late 60's. Not one of my male ancestors has made it to 70.
Heart disease is my concern.
I had one mammogram that resulted in (benign) biopsies. I've decided not to have any more. Cervical cancer doesn't concern me at all. I had one test at 40 to keep my doctor happy. I won't have any more unless my Dr can assure me I won't end up having cryotherapy or something equally unpleasant for nothing. I haven't heard any more about that.

I only really started having an annual check-up in my 40's. My Dr does not routinely examine breasts.
I think having a gyn for an annual check-up is very odd. It may account for all your over-screening and pelvic and breast exams becoming the norm. We only see a gyn when referred by a GP. I've never seen one, my son was delivered by a midwife and I've never had a gyn problem.
I certainly don't believe that part of my body needs close scrutiny. If any part needs close scrutiny, it's my heart.
I wonder whather these exams are an excessive, conservative or paternalistic practice of the past that has just carried on. It sounds like an attempt to keep an easy source of money flowing and doctors becoming increasingly fearful that women are waking up.
It seems offensive to me to put women through such exposure unless there is a definite benefit.
Cervical screening should be the only routine thing that requires that sort of exposure and for those who want it, no more than 3 or 5 yearly from mid 20's to 30.(assuming you've started having sex)
Heather

Anonymous said...

I can't help but wonder the same thing, Dr. Sherman. I don't believe Drs. in every medical specialty depend on annual screenings to earn a living, but based on the experiences shared by many posters on this forum, that seems a good guess for some of the ObGyns out there. Why else would some of them engage in opportunistic screening practices and try to shame, pressure or scare women into having these tests done?

I've also noticed that a lot of ObGyns are now removing the Ob part and designating their practices as "limited to gynecology only." I don't know if that has to do with the unpredictable schedule that comes with delivering babies, the cost of malpractice insurance or perhaps, as some of us wonder, financial reasons. Could it be that the OB end of things is not as profitable given that most women will only be pregnant a couple/few times in their lives if at all? Seems there's more money to be made in rounding everyone up for annual exams than there is in handling the occasional pregnancy and the handful of patients who present with menopausal symptoms, endometriosis, PCOS and so on.

That is my non-doctor two cents, of course, but I imagine there are others out there who've wondered the same things.

Joel Sherman said...

I don't believe that there is a conspiracy among gynecologists to get all women in for exams every year. Annual exams have always been a part of American medicine, though not in other cultures. When Pap smears started 50 years ago it was reasonable to recommend it every year, though I don't think that is applicable now to most women. At any rate, that is how the specialty developed and it's a habit that's hard to break. Yes many Ob-gynes do stop the obstetrics part of their practice as they get older. It's mainly because of onerous call schedules and preposterous malpractice rates. Financially I doubt that they can do better doing annual office exams. Many continue to do gynecologic surgery.
I am interested in looking up exactly what evidence there is for the benefits of annual exams, both general and gynecologic. I'll see what I can find. If any of you have any references, please post them.

Anonymous said...

I found this on the NCI site. Clinical breast exams can't be recommended (no proven benefit) and they cause excessive biopsies.
(same as self-examination)
http://www.cochrane.dk/research/Regular%20self-examination,%20CD003373.pdf
The article by Heather Dixon talks about pelvic exam requirements for birth control; it also covers the benefits of the exam generally.
I know pelvic exams are not a recommended screening test for ovarian cancer.
That leaves smears, no need to talk to you about that!
Routine rectal exams - I couldn't find any evidence of benefit.
Some even wonder whether the annual check-up is necessary or worthwhile.
http://www.cbsnews.com/stories
/2007/09/24/health/webmd/
main3293409.shtml
http://www.law.harvard.edu/
students/orgs/jlg/vol27/
dixon.php

Anonymous said...

http://www.acpm.org/ovary.htm
Pelvic exams not recommended as screening test for ovarian cancer.

This article examines the practice of pelvic exams in Australia. I was surprised to read it's a "widespread practice". I don't know any women who have them and they've never been mentioned to me. I know "Well Woman" checks were promoted by a couple of the City clinics trying to attract "health conscious" women. I asked my GP about them and she said it was an "American thing and not recommended here".
I don't think they've convinced too many women that these things are necessary. The signs advertising this service disappeared fairly quickly. I know some gynaecologists here would like to start the practice. Frankly, I wouldn't trust their opinions, a little too close to home for my liking. Their medical college does not recommend them.

Interesting that most of the pro-gyn exam sites on the net are actually advertising the practices of various American ob/gyn's.
Anyway, these "Well Woman" exams must have prompted the writing of this article.
www.racgp.org.au/afp/200806/200806stewart.pdf

This US site talks about the rectal part of the gyn exam. (horrified expression on face!)
It mentions the exam is of unproven value. (thank goodness!)
Fortunately, the demonstration video did not work on my computer.

www.medicanalife.com/watch_video.php?v=4ba44f135cc410b

My two cents - I don't think these very invasive exams should be recommended or carried out routinely, unless there are clear, proven and important benefits.
I think they're seriously pushed onto American women and that seems very unfair to me.
If the evidence of benefit is low or unproven (or if there is evidence of harm) these exams should not be done. If a woman asks for them, she should be told the truth re benefits and risks.
I think psychologically these exams would be very difficult.
As an Australian woman, I would never agree to them.
Caroline W

Anonymous said...

In response to Caroline W,

Attached is a link to the Australian Government site which includes what I understand are the current recommendations in Australia in relation to pap smears, breast screen and bowel screens.
I note that pap smears are recommended for women every 2 years.
http://www.health.gov.au/internet/screening/publishing.nsf/Content/home

Chris

Anonymous said...

Thanks, Chris.
The 2 years is under review. My doctor says 3 or 5 years is the right mark. Only about 60% of women follow the 2 year program.
20% have 3 or 5 yearly testing and 20% choose not to screen for all sorts of reasons. If more women knew about the risks, few would agree to 2 yearly testing.
The 2 year program leads to over-treatment.
I've read comments on this site about the risks of testing women under 30. We test sexually active women from around 18. I found the articles linked here very worrying. I hope the review also makes clear screening has high risks for young women.
It's time for the truth.
Caroline W

Anonymous said...

This is a great journal article that looks at risks and benefits and basically concludes that breast and pelvic exams should not be done routinely or when starting or using birth control pills. It makes you wonder how we got so far away from that...

http://humupd.oxfordjournals.org
/cgi/reprint/10/5/449.pdf

Joel Sherman said...

This thread is now full and will not accept further posts. Please continue on Part 3.

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