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Wednesday, July 29, 2009

Women's Privacy Concerns Part 3

Part 2 is full. Please continue posting here.
If you haven't seen my article on informed consent and cervical cancer, view it here. I am adding references to the Women's thread links, found in the right hand column below.

200 comments:

Joel Sherman said...

Once again I thank all of you for your active participation. The number and quality of the comments and references given is extraordinary. It will take awhile for me to review all the references given at the end of Part 2.

Anonymous said...

Here are some links that may be of interest to everyone:

http://www.spiked-online.com/index.php/site/article/6563/

http://www.guardian.co.uk/society/2003/may/22/genderissues.publichealth

Anonymous said...

http://jama.ama-assn.org/cgi/content/abstract/285/17/2232

This backs up there is no clinical need for all the health checks "required" for the Pill.
I couldn't find anything that supports the need for annual/routine gyn checks that didn't amount to a gyn touting for business. The articles I did find painted them in terms of unproven, low or poor clinical value.
It seems incredible that from that our doctors can say they are very important for all healthy women. Based on what?
Ruth

Joel Sherman said...

I've read through now the last reference quoted in part 2 by Anon from Oxford Journals.
It's quite good and I do recommend that all read it. It's brief.
I note however that the article does state that cervical cancer is increased on oral contraception (though the effect is small). That clearly is an immense problem for American Ob/Gyn's who face the highest malpractice rates imaginable, sometimes over $150,000 per year. With Pap smears recommended by both ACOG and the AMA, it's not hard to understand why they are reluctant to prescribe the pill without annual Pap smears. None of that however means that informed consent doesn’t apply or that coercion can be used. Physicians can ask women to sign a release instead. All of this should be combined with full information given about the pros and cons of testing.

Anonymous said...

http://www.nature.com/bjc/
journal/v88/n7/abs/6600843a.html

The reduction in cancer rates after screening is examined in this report. The numbers are so tiny, it does seem odd so much money and time is spent on this cancer and screening causes so much potentially harmful investigations and treatments.
If you look at the high risk of colposcopy and biopsies and some of the common negatives there...(premature delivery, infertility and psych problems are the main ones)it makes me wonder whether the funds might be better used in research and development.
MB

Anonymous said...

http://www.ncbi.nlm.nih.gov/pmc/
articles/PMC2517883/
Above: The effect of evidence based information on the willingness of women to participate in cervical screening.
It showed some women would refuse, but is that a bad thing? It also showed it didn't have a big effect with high risk women.
If women got the facts, I think they'd be better able to shape screening to protect themselves from over-treatment. I think most would reject annual and biannual screening - low risk women may avoid screening altogether and other women or risk averse low risk women may go for 3 or 5 yearly. I think most would reject screening before 25 given the very high risks and many would stop at 50 or 60.
The way it is currently thrust onto women causes most of the problem.

www.ncbi.nlm.nih.gov/
pubmed/12883063

Above: The ethics relating to the presentation of information for screening tests. Curiously, they talk about mammograms, not smears.
In my mind, cervical screening should be the first test critically considered - it's an unreliable test and the cancer is uncommon.
PSA - debatable value for a common cancer.
Breast screening - debatable value for a common cancer.
Cervical is the only one with TWO negatives and it's not a simple blood test. I think mammograms and smears are both unpleasant tests...so add that to an unreliable test and uncommon cancer, it is surprising there has been little discussion about the ethics of the approach to cervical cancer screening.
Ruth

Joel Sherman said...

I'm slowly going through the references that have been quoted. This one is by a law student and is a strong defense of a women's right to obtain contraception without undergoing a pelvic exam. It's very long and I just started it.
It is however a legal paper, not a medical one. I don't think anyone here would argue that a woman doesn't have the legal right to accept any bodily risk that she chooses. It's the issue of informed consent again. As a physician, however, I'm more interested in the medical risk a woman has to accept. So far I believe it to be small and acceptable to many women. That's what I'm trying to satisfy myself about. I have been in touch by email with UK researchers Drs Rouse and Raffle for help.

Anonymous said...

What a difference two weeks can make when you have a doctor on your side!
What exciting developments and to see this subject finally being discussed warms my heart and to hear from Angela Raffle. I've read her book on screening; it's excellent.
It has worried me for years the loss of rights, the disrespectful treatment of women, the misleading and incomplete information, the scare campaigns and the harm being done to so many...
I'm a happy woman today. If we have the right information out there, we can arm women for this fight.
It will be harder for American women with mandatory exams for Pills and insurance companies also making demands.
Other women are placed under huge pressure, but I think we can force doctors to accept our decision when we can say something more than, "I don't want the test".
It's easy to counter that reason, it's different when a doctor is met with facts and statistics. Previously, most women did not have access to the facts.
I have a lot of reading to do to catch up on all the posts.
Any progress is heartening.
Elizabeth

Joel Sherman said...

This reference to cervical screening was posted under comments on KevinMD. It's an interesting article which includes some historical information on Pap smears. It's written by an English GP.

Anonymous said...

Found this...
"Outcomes of screening to prevent cancer: analysis of cumulative incidence of cervical abnormality and modelling of cases and deaths prevented" by A Raffle, B Alden, M Quinn, P Babb & M Brett.

http://www.ncbi.nlm.nih.gov/pmc/
articles/PMC153831/

Elizabeth

Anonymous said...

Dr Sherman,

I want to thank you so much for all you are doing on this issue.

Just over a year ago, I looked for information on the risks of cervical cancer screening, because I knew so many women who had or were undergoing "treatment". It also seemed quite strange to me that doctors were so worried about HPV when so many people have the virus and so few end up with cervical cancer.

I read H. Gilbert Welch's excellent, "Should I Be Tested For Cancer" and Nortin Hadler's "The Last Well Person," which I recommend to everyone, but neither focused much on the pap test.

I found almost no mention of any possible negatives of pap testing in the popular press. I had to pour through medical journals and try to make sense of various studies. What I found there did not seem to support the seemingly universal support of the pap test amongst doctors, medical experts, and the public.

I must tell you that I felt incredibly alone in my growing skepticism about this test.

A few weeks ago, when yet another friend, at only 24, was biopsied and told she needed invasive treatment for dysplasia, I decided to look into this matter again.

I was so surprised and elated to find your amazing blog and your article on Kevin MD. And it seems like the British press is also reporting more on the dangers of pap screening lately.

I cannot tell you how important I think your work on this issue is. It will help many, many women. Please continue to get the word out.

I'll post my comment over at Kevin MD too.

- B.T.

Joel Sherman said...

Thanks for the kind words B.T.
If you're looking for information the reference given by Elizabeth is one of the best. Although it's on a NIH server (US) it's a reprint of Angela Raffle's article in the British Medical Journal. Most of the best information on this does seem to come from British studies. I don't think the USPSTF is ready to further tackle cervical cancer given the ruckus they caused already in the US. But they would be the ones to do this. Similar to Raffle's group, they are mainly epidemiologists. Because gynecologists have an immense vested interest in the outcome it is hard to know how impartial they can be looking at statistical evidence and not case histories of women they have 'saved.'
I fear that for the message of this thread to go further it needs to be fully picked up by the mass media in a prominent newspaper or national magazine. This could happen, but there are so many vested interests against it, I wouldn't bet on it happening.

Anonymous said...

"I note however that the article does state that cervical cancer is increased on oral contraception (though the effect is small)."

I seem to have received the impression somewhere that this is a correlation rather than a causation i.e. if you are on the Pill you are generally sexually active (so exposing you to HPV) and you are less likely to be using barrier methods (so exposing you to HPV), rather than the Pill itself "causing" cervical cancer as it were. I don't have any links to back this up though; don't know if any of you clever ladies can find anything...

Anonymous said...

Dr, pressure that creates change is the ultimate. I mean honest information and respect for informed consent. Doing away with the incentives scheme would be welcome as well.
Rome wasn't built in a day though. Many doctors in the UK and Australia rely on this extra income and will fight any changes. The well established and well thought out practice of "manufacturing a good story" and using any means that leads to widespread screening will take a long time to break down.
Yet simply giving women access to this information helps enormously. When you can cite facts and medical references that makes you more confident. The ads become less effective and women are better able to withstand pressure. When screening numbers drop and the viability of these programs becomes an issue, they'll have to make changes. Even if that never happens, informing as many women as possible is better than wholesale ignorance.
Elizabeth

Anonymous said...

http://www.timesonline.co.uk
/tol/life_and_style/health
/article6898189.ece

The boat is starting to sink; coming clean on mammograms.

Joel Sherman said...

This was posted be 'Sasha' on Part 1. Maybe it's of interest to someone.

nice comments
here is a blog about women health
pregnancy vaginal issues
and tubal reversal
http://www.mybabydoc.com/blog/
tubal_reversal

Anonymous said...

Why draft information so a test sounds better than it is or the risk of a cancer sounds greater than it is? If you have to get people to screen by tricking them, you're bound to run into problems later on. Eventually someone will work it out.
If you give people the facts that properly convey the information and fewer people have screening...
Why is that so bad? They've made a choice and the money can be spent reducing the high number of deaths from breast or prostate cancer. If you fear telling the public the truth or giving them a choice, something is not right.
Jess

Joel Sherman said...

I have just read an excellent article:
Australian Family Physician Vol. 35, No. 11, November 2006 873 called 'Routine Pelvic Examination for Asymptomatic Women.'
It basically confirms what most of you have been saying, i.e. that routine pelvic exams accomplish little and should not be required for contraception. The article does not discuss the usefulness of Pap smears, but says exams are not useful for ovarian cancer screening which is widely accepted.
Here's a summary quote from the article:

Review of the literature indicates that the use of routine pelvic examination as screening for ovarian malignancy (with or without serum CA-125 and ultrasound) cannot be justified due to the low prevalence of the disease and low sensitivity and specificity of the examination. Pelvic examinations may be performed at the time of routine Pap tests to aid in technical issues with the Pap test itself, but are not recommended for screening purposes. There is no evidence to support pelvic examination of asymptomatic women taking hormone therapy or attending for a sexual health check. The performance of pelvic examination at the woman’s request must be preceded by thorough gynaecological, medical and family history and after obtaining informed consent from the patient.

I highly recommend the article for those of you want ammunition to deal with your doctors. I wonder why they didn't look closer at Pap smears. I guess it's a sacred cow in Australia too.

Hildy said...

It is such a sacred cow that there is silence on the subject. No talk of risks or the rarity of the cancer. Doctors are even paid to screen for this rare cancer, but not paid to screen for very common prostate cancer.
We live in Australia for 4 months every year and the rest of the time in New York. (my husband's business)
Doctors and others become very defensive if you criticize this testing and some go on the attack.
Women really are picked-on with screening by doctors, women and others.
I can protect myself with my new found knowledge. It bothers me about all the women who are still living with incorrect information and assumptions.
I think women have been made to think this test is just like brushing your teeth and doctors set out with that end in mind. "Just something you must do to be healthy and safe."
But when you look closely at this cancer and the screening...the current program, it's brochures, it's fierce promotion and huge status, the disparity and unfairness jumps out at you. I find it hard to believe it's even legal.

Thank you, Dr

Posted to Kevin MD:
Hildy
December 8, 2009 at 9:10 pm

I’m very pleased to find this article.
I’ve been searching for answers and that’s not easy with no medical training.
My husband is 20 years older than me and we went to the doctor recently for our swine flu injections. My husband is 50 and the doctor took the opportunity to have a chat to him about prostate screening. The pros and cons and the risks. There was a calm and supportive airing of the screening and no pressure at all was applied by the doctor.
It struck me…
I’ve never been given the pros and cons of cervical screening and it was put to me in such a way as to imply I had no choice or no real choice. I think most women would agree we’re not supposed to think about the value of this test, it’s just something we have to do to be healthy and safe. We don’t even think of it as a screening test that can be refused.
I wondered why we’re not given the same information and doctors don’t feel they have to actually ask us if we want the test.
Now I discover that there are 200,000 cases of prostate cancer and 11,000 for cervical cancer.
Can anyone explain to me why women are given no real choice and no real information (if any at all) when we have a much lower risk of this cancer? Men have a much higher risk and doctors ask them if they want testing and go through the pros and cons.
Then I find out that doctors in some countries are paid to screen all or almost all of their patients and that explains at least some of the pressure and the attitudes we see around us.
Our governments feel it’s proper to pay doctors to pressure us to screen for 11,000 cases…but don’t pay doctors to screen men for 200,000 cases.
Does anyone have any idea why this should be okay for women, but not for men?
I have read a bit over the last few days and the very high rates for biopsies is another horrible surprise.
I asked my Dr about this and didn’t really get an answer except to say it may be paternalistic attitudes still exist in the profession and government.
If that’s the case, we need to lobby and change that attitude.
A few posts I’ve read recently make the point that rare cancers need rigorous testing of very large groups to make a difference.
Even if that’s true, why haven’t we been let in on that fact?
Instead we’re told this is a common cancer and this is an easy test with no side effects every woman MUST have regularly and we’re constantly reminded of those facts throughout our lives.
Now it feels like we’ve been misled and they are not facts at all.
I feel like everyone has been part of a major conspiracy that goes to the heart of my health and rights and I’ve just found out about it.
What can we do about this apart from speaking out to our doctors? Many women are still laboring under misapprehensions.
Many women struggle with this screening and we all deserve the truth.
Dr, I join the others in thanking you.
You are indeed a doctor in a million. You have some seriously good karma coming your way!

Anonymous said...

http://news.bbc.co.uk/2/hi/health/7695426.stm

Reading the last line, I noticed the tone...not really consistent with someone who respects informed consent. Something like, "screening rates are falling, this is unacceptable and must be reversed".
I've never noticed articles like that about prostate screening. It seems quite common with screening aimed at women.
I also noticed the figures, screening over 4 million women and there were 410 deaths, up from around 375. ( approx)
That's a small number of deaths for the whole of England and a whole lot of testing. The arrogance of the screening authorities and advocates is out of line and hard to understand. How can they justify the huge expense of screening for a few hundred women? It would have to be a political hot potato or it would be a scandal. The issue of over-treatment is also never mentioned. If women don't want pap smears, I can't see how it's the crime of the century. The fuss about this cancer seems to be a beat-up and diverts attention and money away from serious health problems.
Dr, thanks for raising awareness.

Anonymous said...

I found an article from Australia on informed consent and cancer screening and it includes pap smears.
I think women should write to their local members about the incentives schemes that operate in the UK and Australia.
That would be a great first step, to ramp up the pressure and highlight the conflict of interest. Even if women get to risk information, if doctors are still rewarded for maximum coverage, informed consent will continue to take a back seat - they're conflicting aims. Although it says in the article, that screening numbers are not really affected when women are fully informed - I'd argue women have never really been fully informed.
Even if women get the facts, if they are still going to be seriously pressured by doctors pursuing targets, many will find it difficult to stand firm. I think the pressure will fade when the payments are stopped or the plan is modified.
Even mailing a screening consent form to every woman with risk and benefit information and leaving it to the woman to mail it back with a "Yes" or "No". I think anything discussed on-the-spot in the consult room gives the doctor an advantage...particularly, if there is pressure to agree to the test right then and there.
http://www.racgp.org.au/afp/200904/200903
trevena.pdf
Elizabeth

Anonymous said...

Frankly, it was about time someone mentioned the facts....My problem is that if I don´t agree to a smear, (which I don´t want) I don´t get any medical help whatsoever...That´s why I avoid doctors, and so far I´ve managed to get out of their clutches....And I am certain lots of women eschew health care altogether so not to be pressured into those dreadful tests.

Anonymous said...

I am sorry to hear that you've been unable to receive healthcare w/out the gyn exams coming into play, Anon. As I've said on here before, if I make a Dr. appt. for a certain reason -- say, a sore throat -- then that is all I want to talk about and is all that should be discussed.

We can arm ourselves with the research and bring it up when visiting the Dr., but sometimes even being prepared still doesn't help. There's an awful lot of pressure and a good bit of scare tactics being used and when confronted face-to-face with it, many of us would freeze despite being prepared beforehand. Now how does that really help or benefit a patient?

Anonymous said...

It makes me furious that women miss out on health care because of the pressure to screen for a RARE cancer.
Doctors think this test is SO important, everything else is forgotten.
We know this cancer was never a big threat to women. It probably affects a small group of high risk women. All women should be able to get health care free of pressure to screen for a rare cancer. The repercussions of an abnormal smear (which is very common) are serious for most women. Not many women relish the prospect of LEEP, cryotherapy or biopsies. I spoke to 7 doctors over 3 years before I found one who accepted I didn't want screening tests. It is money that has created this situation and making sure the programs are viable and "successful" which is difficult when you're hunting for about 25 women in every 250,000. (taken from some stats posted) That's why some governments pay doctors to screen all their patients. No wonder doctors want us to think all of this treatment is about cancer and not a hopeless test.
Evelyn

Anonymous said...

Using fear and making sure the "information" you give women makes it sound even scarier is a disgusting way to treat women. My father told me when I was 2, that the lemon trees might chase me if I went near them...it was to keep me away from the dam, which was just beyond the lemon trees. For years I feared those lemon trees. I now know lemon trees are fine and cervical cancer is not sweeping the country and this test is not as great as we've been told. Why do doctors think they can treat us like 2 year olds?
Marisa S

Anonymous said...

http://www.cancerscreening.nhs.uk/prostate/index.html

This is the UK male prostate cancer screening advice....

Joel Sherman said...

That link sets out 10 conditions that should exist for a screening test. Clearly Pap smears flunk some of their conditions. Pap smears are a test that's been grandfathered into acceptability and wouldn't satisfy modern standards.

Anonymous said...

Thanks Dr for this discussion.
These facts are not available anywhere else.
Many websites contain risk factors for this cancer and the first risk is usually not having pap smears or not having them regularly. I think HPV infection would be the first risk factor. This type of statement is just to reinforce the need for smears for all women and comes before all of the real risk factors. Some women who don't have smears are educated women and have done their research. Some women don't want to take the high risk of biopsies and others always use condoms and have been with one or two partners (and so have their partners) so they are low risk. Trying to make out all women have a high risk of this cancer is dishonest. All women should choose for themselves.
Not having smears is not a risk factor for this cancer. If it is, it should be mentioned that having smears is a risk factor for this cancer with false negatives and a risk factor for infertility, pre-term delivery, prolapse and other things.
The current imformation is all misleading and deceptive and it's disappointing that very few doctors even see this as a problem, unfair or unethical.
BV

Anonymous said...

There was a proposal in Australia that maybe a chemist could refill scripts for the Pill and other "simple things". Doctors came out and said there was no such thing as a simple repeat script...some would want to check pap smear status, others did a breast check. No one mentioned pelvic exams (thankfully)
No one made the point that doctors should NOT do exams that are not medically required for the Pill. Smears are a screening test and up to the patient (or should be) and have no relevance to contraception. Doctors have also been told not to do routine breast checks because they lead to high numbers of benign biopsies.
No one made that point. It seems a woman's body is not really her own if she wants the Pill and doctor's can do whatever they choose to do regardless of the recommendations and clinical value.
I made the point but my post didn't appear, I guess due to sensitivity over pap smears. Saying anything negative about pap smears is a capital offence here...
I'm sorry we don't have any doctors who can see things as they really are and say something when it's unfair.
People listen to doctors so your words are very important. I'm sure many doctors would curse you for raising something so obviously correct and unethical which everyone was happy to ignore and allow to continue.
Hopefully, there were some doctors who had never questioned the system but might do so in the future after reading your article.
Ann

Anonymous said...

I hate that women are ridiculed if they do get cancer and have avoided testing. Doctors and women seem to delight in calling her an idiot and deserving of a long and painful death.
I don't think that would happen if a man got prostate cancer and had avoided testing.
Men seem to have a choice, it's appreciated that screening is a gamble in itself...but that doesn't happen with cancer screening for women. If we make an "informed" decision, we deserve to die and will even be made an example of...
I think cancer screening for women has become something it was never supposed to be...mandatory testing.
KAT

Joel Sherman said...

Here's a link to an article on cervical cancer which I believe is fairly informative. It's from the National Association of Nurse Practitioners in Women's Health.
Gives some nice information about the use of HPV DNA test is association with Pap smears.
It talks briefly about informed consent as well, but not from a view point that women should be able to refuse the test.

Anonymous said...

No, nothing implies we can refuse the test.
Dr, what do we do when our doctors are saying they won't be following the revised recommendations? I'm concerned about all the things that are being said and now publicly about the risks of testing before 21 and yearly and mammograms before 50 and yearly. Nothing is recommended yearly (pap smears or mammograms) I'm too young for mammograms. My doctor is one who won't be changing and I want to finally have some input into my health care. I can't get BCPills unless I have annual smears even when the recommendations say this causes too many benign biopsies.
What do we do? I can't easily change my doctor because of the insurance plan and most doctors seem to be saying the same thing. Even a senior gyn at one of the leading hospitals here said he'd still test annually and include teenagers. How do we protect ourselves? Why do these doctors stubbornly stick with the old ways knowing the recommendations have been changed for very good reasons? It looks like the only way to avoid over-screening is to go off BC. I don't think that's fair. Why should I accept a higher risk of an unplanned pregnancy when my husband and I are still studying? I don't want to have an abortion so a pregnancy would mean a child we're not ready for.
STACEY P

Joel Sherman said...

Stacey P,
There's no easy course unless you'd be willing to submit to screening. I'd suggest for your next appointment you take in a copy of the recent official guidelines of ACOG and present them to your doctor. If he still refuses as is likely, the next step would be to complain formally to your insurance company to find you a doctor who will follow recommendations. The insurance company might help as they are the ones who wind up paying for unwanted and unnecessary tests. You could of course also complain to the state medical board who will likely do nothing besides notify the physician of the complaint. Still and all, no doctor likes to be the recipient of complaints.
I know none of those suggestions are easy or hassle free. Good luck.

Anonymous said...

"You could of course also complain to the state medical board who will likely do nothing besides notify the physician of the complaint."

Would that be the case when there is clear evidence of harm with too frequent screening? Just looking at the UK references, it looks very clear. These doctors are taking unacceptable risks for no additional benefit to their patients and with something like cancer screening, which is supposedly optional.
Even if a patient agreed to these terms to get the Pill or followed their doctor's recommendations, given annual smears mean almost every woman will have treatment, wouldn't that expose the doctor to liability? (when their society and others don't recommend annual smears for that very reason) I know treatment is very common and some women end up with damage to the cervix and emotional issues. A friend ended up an emotional wreck after some sort of treatment for abnormal cells when she was only 20. Have these doctors considered they might be exposing themselves to major liability forcing all these women to have annual testing or even continuing to recommend it? I imagine Stacey and others like her will be quick to speak to a lawyer if they end up having treatment. Women know the consequences of annual screening now, in the past, they didn't...
Doesn't that change everything?
Peter

Joel Sherman said...

Peter, medical boards aren't courts of law though they vary from state to state.
But they are very unlikely to censure a physician for a position which is still in current practice, even if not officially recommended anymore. It's possible though.
I recommend filing a complaint with the board only because they will notify the doctor and that will put physicians on the defensive. This may cause them to rethink their position.

Anonymous said...

The repercussions of over-screening have been well known for many years.
There are quite a few older articles talking of the dangers of over-screening.

http://www.springerlink.com/content/rw33577571673852/

This one dates from 2004. but there are some going back to the early 1990's.

Anonymous said...

Some information on the Finnish 5 yearly program that may be of interest to some of you.
http://jms.rsmjournals.com/cgi/reprint/6/2/103.pdf

Joel Sherman said...

This thread has many important references in it for women who want to find out the hopefully unbiased facts about yearly 'well women' gyn visits, Pap smears and cancer screening. But I'm aware that the thread has become so long that one has to go through a lot of reading now to find them. If you would like to tell me what you think the most important available online references are, I'll post them in a new section under links. Thanks.

Elizabeth said...

Good idea, I'll go through my file.
I'm re-reading "Screening" by Angela Raffle and Muir Gray and after our discussions here, it really fills in a lot of gaps.

It covers the history of screening and the annual exam in the UK and the States. The annual physical was evaluated in the UK over many years with a control group (no exams) and a group having annual exams - they were found to have no value at all. The Americans were already convinced after decades of hearing about its benefits.
You were early starters in screening.
After these exams were ruled out in the UK, there was a later attempt to introduce them, but it was stopped by the physicians involved in the lengthy study.

Most screening tests were not properly evaluated or fell short, but were introduced anyway. It seems politics, social considerations and pressure groups were paramount - and people believe in screening. It makes sense to many people...catch it early, stop it in its tracks, is sort of comforting.
The authors state that two factors play a part,
a) The reassurance illusion - those with a normal screening exam feel good, even though their risk has changed little and,
b) the Popularity paradox - the more overdiagnosis a screening program causes, the more popular it is - as more and more participants believe they owe it their life. (like cervical screening)
An abnormal smear and "treatment" means your life was saved to many women, even if it was a false positive or would have regressed without treatment or never advanced to invasive cancer.
On page 19, they cover the history of cervical screening.
In the 1940s the average woman was unlikely to have heard of cervical cancer. Mouth cancer had a similar frequency.
It just goes to show how powerful these programs are and how there fierce promotion and clever marketing changes our thinking and perception of risk. All the hysteria and focus on cervical cancer today, what about mouth cancer? How many people worry about mouth cancer? It occurred as often as cervical.
I assume if a screening program had started for mouth cancer, we'd be worrying about mouth cancer instead of cervical cancer.
I thought that was interesting.
I'd recommend this book to anyone interested in screening and preventative health.
(Printed by Oxford University Press, 2007)

Anonymous said...

I wouldn't mind being checked for mouth cancer, but mind very much being checked for cervical cancer.
No one seems to care about patient sensitivity.
If cervical cancer was rare or uncommon, why expose (quite literally!) every woman to screening? This is an intimate and sensitive part of our body and private...
I don't want anyone poking around and scrapping at me or cutting out pre-cancer cells to cover this small risk. If the risk is 1% or 2%, I'm not concerned about that sort of risk. Being realistic, my bush walking probably exposes me to more risk.
It says something that the plan was to compromise our autonomy and privacy to cover that small risk and with a high risk of false positives and no one thought we should even have a choice. I've avoided screening all my life and for the first time feel relieved that I followed my instincts. This test was too undignified and invasive for me. I feared the exam more than cancer. If the test is very invasive and unpleasant, we should have a real choice and be told the risk of the cancer and of the test. Something non-invasive and reliable, I wouldn't mind...
We're human beings and our right to protect our personal space should never be taken lightly...when this test seems to benefit a very small number, it should be every woman's choice whether she wishes to have these invasive tests and procedures. I would say almost all women are unaware of the real risk of this cancer and the risks of testing.
I think many women have been living in fear or struggling to cope with these exams and procedures...had they known the real risk of this cancer, they might have rejected this testing or had the facts to defend themselves and may have had a better quality of life. I think losing your quality of life is a high price to pay to cover a few lives.
This site is invaluable...and precious. I feel it is unique in providing women with the truth, the facts.

Anonymous said...

I resent not being able to see a dr without this damn screening being raised...if its a rare cancer, why divert limited consult time to this subject?
It results in less time for more important problems or keeps women away and other health concerns are left untreated.
It defeats the point of good preventative health care when people feel so under threat that they avoid doctors or have an antagonistic relationship with doctors.
Maggie

Joel Sherman said...

An excellent article on the need for annual gynecologic exams for contraceptive pills:
Clinical Breast and Pelvic Examination Requirements for Hormonal Contraception: Current Practice vs Evidence Felicia H. Stewart; Cynthia C. Harper; Charlotte E. Ellertson; David A. Grimes; George F. Sawaya; James Trussell JAMA. 2001;285:2232-2239.

The summary is:
Clinical breast and pelvic examinations are commonly accepted practices prior to provision of hormonal contraception. Such examinations, however, may reduce access to highly effective contraceptive methods, and may therefore increase women’s overall health risks. These unnecessary requirements also involve ethical considerations and unwittingly reinforce the widely held but incorrect perception that hormonal contraceptive methods are dangerous.
This article reviews and summarizes the relevant medical literature and policy statements from major organizations active in the field of contraception.
Consensus developed during the last decade supports a change in practice: hormonal contraception can safely be provided based on careful review of medical history and blood pressure measurement. For most women, no further evaluation is necessary. Pelvic and breast examinations and screening for cervical neoplasia and sexually transmitted infection, while important in their own right, do not provide information necessary for identifying women who should avoid hormonal contraceptives or who need further evaluation before making a decision about their use.


You wouldn't necessarily expect JAMA to be pushing an article that concludes that less exams are needed.

Anonymous said...

A specialist has weighed into the discussion on Kevin MD...which is great. It would be terrific if even one dr stopped and considered his attitude after reading the article and looking at the huge number of comments.
His comments don't change the facts though...we need honest and unemotional information and informed consent should also apply to breast and cervical screening.
Three cheers for fighting unfairness!

Anonymous said...

Interesting link perhaps for any Brits reading this blog, of a parliamentary debate on the GP renumeration process for GPs doing smears:

http://www.parliament.the-stationery-office.co.uk/pa/cm198990/cmhansrd/1990-03-29/Debate-15.html

Joel Sherman said...

Yes I was pleased to see the comments by 'Dr D' on KevinMD blog. Good that it may start a further conversation.
He has a point which I never denied, women who have been sexually active are at some risk of cervical cancer. Even if the risk is small, it is significant. My main point has never been that women should not get Pap smears. My point is that women should not be pressured into getting them. You ladies are perfectly competent to decide for yourself after the facts have been fairly presented to you. Clearly that rarely happens in most countries. My wife and I now know that she did not need 45 Pap smears.

Anonymous said...

By "sexually active" Dr, do you mean multiple partners or a series of partners?
I'm sexually active with my husband and we've been together since we were in high school. I've never wanted smears because I don't feel I would benefit from them. If I were sexually active in the sense of having sex with many men or lots of short term relationships, I might think that screening every 5 years was more likely to help me. If you are in the firing line, even a 1% risk is worth thinking about...but I can still see why some women would rather carry that small risk than go through testing and treatments. Even 5 yearly testing leads to significant levels of treatment. I wish my Doc would stop trying to scare me into the test. What if your husband has an affair or uses prostitutes? I have lived with this man for many years, she has never met him...surely it should be my decision whether I belive in his fidelity or not.
Marg

Joel Sherman said...

Marg,
First, I am not an expert on the subject and secondly my readings seem to indicate that not all facts are known. Clearly if you have had 3 negative Paps and are in a long term mutually monogamous relationship your risk is very very small. Is it ever actually zero? -Probably not as cancer can take 15-20 years to develop.
To be as safe as possible it is likely acceptable to only obtain exams every 3-5 years at that point. But any woman should be free to accept less than perfect assurance for herself.

Dee said...

45 pap smears!
That is a lot of screening.
I suppose your wife also had LEEP or something equally bad. If not, she was very lucky.
Even if I followed the programme here, (UK) which I don't, I wouldn't have more than 12 smears.
If the wife of a doctor has 45 smears, what hope do the rest of us have? NO criticism of you, Dr Sherman, but a cardiologist has a better idea of medical things than a mechanic. (my husband)
I'm a hairdresser and if it were up to me to find the facts in journals, it would be a long time coming...
If your wife had been given the facts at any time over these many years, she might have refused some of those smears.
Thank you for saving me the headache of trying to work out which way to hold a medical journal. Being truthful, fear of cancer is my excuse...I prefer not to know.
I feel happier knowing more of the facts that's for sure.

Anonymous said...

Dr Sherman, Are you aware of any medical articles that provide strong evidence of the benefits and need for routine and annual gyn exams?
I haven't been able to find anything. I asked my Dr and got a hand-out produced by the surgery. I asked for other references and was told not to worry, they have done that work for me. After reading most of this blog, I'm not happy to accept that and want to do my own reading.
These exams are so bad that I would do anything to avoid them. Unless they are of high and proven value, I'll skip them in future.
Thank you!
Zoe

Joel Sherman said...

Zoe, I have not made a search on the topic of the value of annual physical and gynecologic exams, but I'm aware of no studies that prove they are of great value. I believe there are some prior references given in earlier parts of this thread. Like the study in JAMA above, most articles that I've seen say they are of doubtful value and that most people could get the same results from occasional visits to the doctor for intercurrent illnesses.
There are some simple checks which are of value such as getting say an annual blood pressure taken. But the value of physical exams in asymptomatic healthy people is doubtful. It certainly is not cost effective from a public health standpoint.
Dee all my wife's exams have been negative. If she had needed LEEP or other procedures, I'm sure we would have looked into it further.

Anonymous said...

How was it possible to hide these important facts? Not one doctor or anyone else involved in medicine broke rank to warn women.
Dr, do you consider these facts were hidden and it would have been difficult for most women to find them or were they widely known in medical circles or at least gyn circles?
I feel a bit shaken when I think how all the doctors I've seen over the years have told me something that doesn't appear here.

a) All women must have smears as soon as they are sexually active or by 18. Virgins included...yet this cancer is linked with an STD??
That is still the recommendation...from 21, even if you're a virgin. How can that be supported? Also, screening under 25 or 30 carries high risks.
b) Having them every year is important or you could develop cancer. Annual smears is over-screening and causes over-treatment.
c) This cancer is very common and kills large numbers of women. It strikes women of all ages and everyone is at high risk. Most of that is untrue.
c) The smear is quick, painless (I disagree with that) and has no side effects
No mention was ever made of over-treatment or false results.

Not one doctor has ever corrected the impression that was given to me by the profession over the last 20 years.

Annual gyn exam - If you do a search on-line you'll find a lot of sites dedicated to convincing women that smart and responsible women look after their health by having annual gyn exams.
How is it that these sites get away with apparently misleading women? Most are University Clinics, medical groups or governement health sites. The language used makes these exams sound not only important, but VERY important for all women.

Have women just been used in the most invasive way possible to keep profits high? It can't be defensive medicine because these sites are encouraging uptake - getting women into these exams.
Shouldn't these sites be shut down and at the very least be forced to rewrite their sites reflecting the fact these exams are of unproven value and may have risks or are low risk, whatever it is, but they are definitely not "very important"?
Women are regularly told by almost everyone that they "must have their annual gyn exam". Otherwise, you're a silly girl taking high risks with your health.
When you consider what these exams involve, it's inexcusable.
I'm sorry if I'm quizzing you, it's just you're the only doctor I can ask and expect an honest answer. That's the way I feel anyway. Most of all I'm pleased I have somewhere "safe" to vent and lick my wounds!
BethC

Joel Sherman said...

I have added the USPSTF guidelines for cervical cancer screening to the women's links section. I recommend them. This Federal group has no monetary motives for their recommendations and incorporates up to date public health screening practices. They also give their rationales. They are still more conservative than most European countries.
BethC, I can only give you my speculations to answer your questions. Pap test screening is 50 years old and was a spectacular success in bringing down the rates of cervical cancer. I know other factors may contribute, but Pap smears are a vital part of the reduction. Modern screening guidelines looking at both benefit and harm didn't come into vogue in the US for 30-40 years after that so nobody looked beyond the reduction in death rates. Remember also that the view of cervical cancer as an HPV related STD wasn't known till recent years. Universal annual screening could be justified then, but not now. But in the meantime the medical establishment has benefited greatly from getting all women into their office every year. There are now so many vested interests that it is hard to change. This includes the many women's health organizations that fight for women's health. In contrast, there are essentially no organizations that promote men's health.
So I do not think this started as a plot of the health industry to make more money, but it will take time to change practices now.

Anonymous said...

I found a paper entitled "It's just part of being a woman": cervical screening, the body and femininity by Judith Bush, Social Science & Medicine, Vol 50, Issue 3, Feb 2000, pgs 429-444.
It does talk about feminist theories that could alienate some readers, but the essence of the paper summarizes why I've felt deeply concerned about this program for many years. In particular, since the introduction of the call & recall system and financial incentives legislation/screening targets.

It talks about the medicalization of women's sexuality and bodies and the program conducting surveillance, regulation and control over women. The thinking is now that screening is normal and not screening is abnormal, thus no "excuse" is good enough. The interviews with women highlight the total lack of informed consent. The non-screeners are abnormal thinking has been passed down to women by the profession to further isolate and pressure these women. Women are no longer individuals, but a collection of passive bodies.

Pg 440 - "The program has been instrumental in establishing having a smear test as a social norm and instilling notions of deviance upon "non-attenders"."
Citing McKie (1995) screening "is both creating and re-inforcing a surveillance of women's sexual lives" and that "women's sexual activity and cervical health are utilised as mechanisms for the operation of power over women".
Plus, "getting women to behave in a particular, prescribed way." & "Cervical screening is built upon the medical discourse concerning the need for regulation of women's bodies." pg 441
Three discourses play a role in regulating the feelings of normalcy associated with having a smear test. The cervical screening program "is built on a philosophy of ensuring conformity to the norm through invitations, re-call and reminder letters and via guilt and notions of deviance upon non-attenders."
"Opportunistic screening plays a role in regulating attendance for screening and making smear tests appear compulsory." (making them a pre-requisite for the Pill is an example)
Fear of cancer - women felt that they needed to have regular smear tests in order to keep themselves free of cancer. "The perceived need for surveillance was exacerbated by medical discourse which dictate that "non attenders" for cervical screening are at greater risk of developing cervical cancer, a message reinforced by health promotion material." pg 441

"Traditionally, feminists have advocated screening as a means of enabling women to obtain greater knowledge and insight into their own state of health and subsequently to obtain more control over their own body and prevent disease. Cervical screening discourse normalise and discipline women through the body, thus maintaining the disciplinary power of medicine."
My feelings exactly...

Informed consent is the critical thing and its omission changes everything.
Women should not be having smears because of fear, pressure, coercive tactics, but "because they have decided - with knowledge of both the advantages and disadvantages of the cervical screening program - that it's something that they personally WANT to do". pg 442

I'm not against screening per se, but I'm against the current program and its treatment of women. I have never heard a woman say she's having screening based on an informed decision. If screening had been "built" incorporating informed consent and an individual woman's right to choose, with no target payments and no opportunistic smears, then we may have a screening program. (although the huge over-treatment does concern me...is it a suitable screening test?)
There is some talk of informed consent in the UK, but I doubt it's actually changing the nature of the program as it stands - the call & recall program and payments system leaves little room for informed consent.
Elizabeth

Anonymous said...

May I add that the points made in the paper are equally applicable to the routine gyn exams that American and German women have been made to think and accept as a "normal" part of being a woman.
These exams are part of your routine healthcare and not having them is "abnormal".
You could say it's another example of normalizing the need for surveillance of the healthy female body. That campaign was also built on compliance and not informed consent.
In fact, there is evidence that cervical screening can benefit a small number of women, yet I've found no evidence these routine gyn exams are of benefit, on the contrary, they can be harmful.
Elizabeth

Bella said...

Elizabeth, thank you so much for all the links you post. This article is so interesting. I've been thinking about a lot of these issues.

It seems like routine pap smears have made all women think about their bodies and health differently, like we are precancerous beings and need to be constantly evaluated in an invasive manner to make sure we're healthy. And if we question the need for invasive evaluations, we're deviant. This is psychologically damaging to all of us.

H. Gilbert Welch says that because the U.S. has a for-profit medical system, all patients are "consumers" and need to be skeptical about treatment, but he warns that we should not be cynical. I'm afraid I'm not sure how to walk that line. Any ideas?

After extensively reading on the topic, I now think that any cancer I would want to treat would be one that asserts itself. At least with the screening tests we have right now, I don't think we should be screening for any cancers in healthy populations. Screening unnecessarily turns too large of a number of perfectly healthy people into worried, anxious, and depressed "patients" and puts all of our focus on the fear of disease rather than on attaining health and enjoying life. Besides, if we took the focus off of screening healthy people, we'd have more resources to care for those who are actually sick.

Anonymous said...

You're welcome, Bella.
I'm afraid I have a thing about unfairness and getting to the truth.
I'd like every woman to be fully informed, but it's difficult after decades of fear campaigns and misinformation. Also, many women assume over-treatment amounts to life-saving treatment for cancer. I heard a woman say on the radio, "All of my sisters and my cousin had cervical cancer"...I doubt that very much, but many women think dysplasia and false positives = cancer. It would take a lot to convince some of these women otherwise. It's also painful to accept you were over-treated or misled.
The Dr receiving this woman's call made no comment about all of these women having this rare cancer. Instead he used the opportunity to stress that all women need to have regular smears to guard against this common threat. Of course, doctor's never divulge their conflict of interest.

Am I cynical?
I deal with facts and then emotion. I have a risk v benefit test and if screening does not satisfy MY standard of proof, I confidently and firmly decline...
I would never allow myself to be pressured or "required" to have screening. In reality, doctors know they can't push informed women around...that is reserved for sadly, the majority of women.

It's a question of getting the information out there and encouraging women to read it with an open mind. Many women are unable to make a case for declining screening. I don't believe we should need to make a case, but that's the reality. I think knowledge is vitally important and finding a balanced doctor.

I think screening has set women back 150 years...I hope one day our rights are respected and every woman is handed the information she needs to make an informed decision. I also hope to see the end of high pressure and the payment/target system. We also need to modify call and recall systems and other "invitations" so they are nothing more than invitations.
Give women the information and then it's up to them whether they accept, decline or modify the screening program, NO pressure.

That would be a genuine and honest offer of screening and entirely a matter for each individual woman. The current system and the damage, abuse of rights and fear it has created will not be easily turned around...

I'm so grateful to Dr Sherman for providing us with a safe and supportive house. There is no greater issue in women's health as far as I'm concerned...this strikes at the core of our being, the right to protect ourselves from harm, respect for bodily autonomy and to self-determination.

I don't care if every woman chooses to have screening, as long as it's their informed decision. We are light years away from that at the moment.
Elizabeth

Anonymous said...

The truth is hidden from women.
At our facility 40% of the cone biopsies are negative. The aim is to reduce the number to 20% over the next 5 years through better colposcopy. That is a lot of women having negative cone biopsies. If you have a colposcopy and if you're testing regularly, you will...then make sure you're in experienced and competent hands.

Anonymous said...

The "responsibility" of cervical cancer prevention has fallen mainly on women. The role of men in the spread of HPV is important. Uncircumcized men are more likely to give their sexual partners HPV (assuming he's not a virgin) and if men use prostitutes or have affairs, they can infect their wife.
At the moment men can't get tested for HPV, if they could, you could insist that any new partner was tested for HPV and forget about cervical cancer and smears.
That test has been slow to appear. We have many new things for women and are still waiting for a HPV test for men.
Pap smear testing is very profitable, is this holding up the HPV test for men? For too long, Dr's have looked at one half of the problem. Vaccinating boys for HPV will help and we need more education about the value of condoms and faithfulness. Condoms offer good protection against HPV but not perfect protection.
Time to deal with the other half of the problem.
http://www.scielosp.org/
scielo.php?script=sci_arttext&pid=S0036-36342003000900008

Valerie M. said...

What is the evidence that HPV causes cervical cancer? My understanding is that researchers assume it does, because many cervical cancer patients are HPV positive - a correlation.

This caught my eye in the above linked article by Micheal Fitzpatrick (http://www.spiked-online.com/index.php/site/article/6384/):

"Health promotion propaganda which characterises cervical cancer as a sexually transmitted disease (on the dubious grounds of an association with the wart virus) has undoubtedly deterred many women from having smear tests."

Could this be true that the association between HPV and Cervical Cancer is dubious?

I found this dissenting opinion to the HPV causation theory by Peter Duesberg and Jody Schwartz, molecular biologists at the University of California at Berkeley (pg. 160) :

http://www.duesberg.com/papers/latent%20virus.pdf

My understanding is that in the seventies, researchers believed that the herpes virus caused cervical cancer because the two are also correlated, but that theory was eventually disproved.

HPV is extremely common. And it is very, very rare that a woman can't clear HPV from her system. Why we don't study what is going on with the immune system in those very rare cases rather than spread an HPV fear campaign directed at all women?

It seems tragic how scared women are of HPV when it is so common and perfectly harmless to the vast majority of us. And what a strange notion that people should just use condoms at all times to prevent the HPV. Most of us desire to have children at some point.

Anonymous said...

These comments made me send an email to my friend who lives in Chicago. I think these lists say a lot on their own. I knew she'd had an abnormal pap 2 years ago when she was 22, going on 23.
Both almost 25 and healthy.

Jo (American)

13 pap smears (includes
2 repeat tests b/c of poor
sample and 2 x 6 mthly
after abnormal pap)
This is a bit of a guess, they
started at 16 and happen yearly and she had them more often for a while after the abnormal pap smear. It might be 15...

9 pelvic exams

5 rectal exams (her new doctor
doesn't do them)

Breast exams 11
Breast Ultrasound 1
Pelvic Ultrasound 1
Mammogram 2
Biopsy of right breast 1
(the breast stuff happened after
the doctor felt a lump doing a routine check.)
All tests were negative.

Colposcopy 1
Punch (?) biopsy 1
(she doesn't mention what sort of biopsy. It was done in the doctor's rooms so it doesn't sound like a cone biopsy or cryotherapy)

Can you imagine what this list will look like when Jo is 50?

My list

Pap smears 0
(too young for them)AND I'll be checking out this site FIRST!
Pelvic exams 0
Rectal exams 0
Breast exams 0
All the ultrasound and biopsy stuff 0

Is Jo any healthier for all of her tests?
I sent Jo this link.
I think she needs to read it before she does anything else. This is more than important.
Her health is at stake.
Great site!
Veronica

Anonymous said...

Concerning Anonymous's statement that an uncircumcised man is more likely to give a partner HPV.

This is from the Women's Cancer Information Center: "Circumcision is no longer believed to lower the risk of cervical carcinoma."

The following study also found "no association between cervical cancer and lack of circumcision of the husband." :

http://www.cirp.org/library/disease/cancer/aitken-swan1/

Anonymous said...

I think there probably is a link with HPV, I'm not sure why the doctor would use the word, dubious. Of course, the way HPV has been used to scare women is disgusting. It's just another way of saying we're all at risk.
The facts are (thank you everyone who contributed to this thread)
Cervical cancer is uncommon and only a tiny number of HPV cases progress to cancer.
We're all at risk of mouth cancer and apparently it's the same risk, yet we don't have doctors getting us to have oral checks or swabs or advocating self-exams. I actually feel a bit uncomfortable how all of these "scare campaigns" end up with lots of frightened women being prepared to get into stirrups or have their breasts squashed flat. It almost seems like a plot to degrade all of us...to make us helpless and rob us of our dignity with negligible or no health benefit. Are we too gullible? My partner has an equal relationship with his doctor, I've never managed that, it's more master and servant.

Anonymous said...

Women SHOULD have a yearly pelvic exam from 21 or even earlier.
That is always the "rule".
The word "should" means an obligation or duty.
If these exams are not of high value, how can so many people get away with saying "should".
Most of us have no choice but to accept what we're told by doctors and via the media. If these exams are not important, someone needs to report these websites....they are misleading women. These exams are revolting and demeaning, they should not be allowed to state in clear terms that women "should" have these exams. That does not seem a fair and reasonable reflection of the truth...low clinical value.
Here is one example of "should" but it's everywhere.
They are strongly recommended by the Student Clinic, no reservations at all. I've stayed away as I'm a virgin. After reading the article by Ms Dixon, I won't be having pelvic exams.
I'm still reading about breast exams and pap tests. I'm relieved I found this site.
Dr, would it be worth reporting these sites to Advertising Standards or better to lodge a complaint with the health website?
Suzy
http://cancer.about.com
/od/cancersaffectingwomen
/p/pelvicexam.htm

Anonymous said...

"I think there probably is a link with HPV, I'm not sure why the doctor would use the word, dubious." Obviously there is a link, but I think Valerie M. is asking if there is evidence that the link is cause and effect.

Here's an article by Dr. Christiana Northrup. She says "The risk of getting cervical cancer from HPV has been greatly overstated! Fifty to seventy-five percent of all people are exposed to HPV in their lifetimes. The virus clears spontaneously by the immune system within two years in over ninety percent of all women, posing no risk at all."
http://menopause.gaia.com/blog/2008/1/hpv_vaccine_alternative_view

Joel Sherman said...

Valerie M, the accepted theory is that HPV infection sets the stage for the cellular transformations that in a small percentage of women may progress to cancer. In the large majority it resolves spontaneously with no harm done. There are many strains of HPV and only a few pose a significant risk.
If there is significant doubt to the validity of this theory, I am not aware of it, but in any event I would not be competent to judge the evidence.

Anonymous said...

Could the HPV thing be another beat-up to get all women to screen? It seems to be the new threat for women. There are leaflets at the doctor's surgery, "How to avoid HPV?"...
Everyone is becoming paranoid about HPV now and all of this is to "fight" a cancer that affects about 1% of women? I just read the article by Richard DeMay and he mentions the 1% figure.
Why don't we all forget about cervical cancer and worry about something that's a real threat to our lives?
Jossie

Anonymous said...

Bowel cancer has a screening test:very common cancer
Prostate cancer has a screening test: very common cancer
Breast cancer has a screening test: very common cancer
Cervical cancer has a screening test and is rare, and was rare before screening.
How was this approved?
The expenditure of huge sums of money for a rare cancer and for a test that harms most women in a bid to save a few women.

The other fact: women weren't told of the risks and had no real choice whether they wanted to screen or not. Apart from a few amazingly informed women!
The most coercive tactics have been reserved for cervical cancer screening.
To find a few women, you'd need to screen very high numbers...so a group of people decided they could harm almost everyone to save a few and mislead us to make it easier to get us in for screening and get the necessary numbers. They'd also devise techniques that robbed us of a choice and imposed screening on us.
I can't believe the reality is so far away from the myth that has been created...
Unbelievable!

Anonymous said...

More Hansard for the Brits. This is from 1988 and quite interestingly covers the discussion in parliament about the setting up of the formal recall system, which I think marks the beginning of the serious pressure on UK women to be screened:

http://hansard.millbanksystems.com/commons/1988/apr/13/cervical-cytology-screening

Joel Sherman said...

Posted by Anon:

Veronica, this is so truly awful, what your poor friend had to endure! Less than hundred years ago, doctors removed the clitoris of women who masturbated, and were gullible enough to tell it to them, nowadays we of course know that masturbation is perfectly harmless, but the core attitude hasn't changed much- the same bull...t about the inferior, unpredictable, untrustworthy, female body, as if being female were a chronic disease or degradation from the "norm" needing constant attention and intervention. All these lightweight health websites are saying this basically- through the flowers of course. "SHOULD"? "HAVE TO"?
Im sure in the future people will be disgusted by our societies "norms" of invasive exams on healthy women, as this idea belongs 150 years earlier, in the age of covering ankles and censorhip of nudes in paintings.

Anonymous said...

Veronica's friend is not unusual at all. I'm 35 and couldn't tell you how many pap tests I've had...lots!
I'll rival Dr Sherman's wife when I'm older as my doc is still doing them 6 monthly or yearly. I don't have a choice at all about pap tests (and other exams) or how often, unless I go off birth control.
I think the linking of birth control and pap tests and other gyn exams makes informed consent a bit of a joke and risk information a bit pointless.
I can't protect myself from over-testing or choose not to have them unless I risk pregnancy.
I really have trouble understanding how this became the accepted thing to do to women. I had no idea until now of the tiny risk posed by this cancer nor the high risks.
It leaves me feeling very worried about the future.
I've also had three colposcopies, biopsies and ablative therapy last year. I haven't had a pelvic ultrasound or breast biopsies YET. I have a feeling they will be part of my future.
Thank you Dr for informing me. What can we do to give women a choice about this testing and these exams?
Celia

Joel Sherman said...

Celia, I can't give any advice that would be specific for you, especially if you've had prior abnormal Paps. That could change indications.
But the same general advice holds for everyone. Bring in the new ACOG guidelines with you. They don't say anything about being on contraceptive pills. Almost certainly they would have included that as a special concern if they thought it was justifiable. They didn't.
If your doctor won't pay any attention to the guidelines, consider reporting him/her to the insurance company or state medical board.
If you ladies don't make your protests known, nothing will ever change.

Anonymous said...

The problem is...so many women have treatment for things that would never turn into invasive cancer, everyone seems to have pre-cancer cells.
I don't think you should test women (or men) with something that causes so much over-treatment and definitely not for a rare cancer. Many women would be afraid to avoid pap smears because they and many they know have already had pre-cancer...mentally they'd see this cancer as a greater threat, even when the evidence doesn't back that up. (they wouldn't know about that)
Women who've had negative biopsies might feel differently because that shows the pap was wrong. Although many women feel relieved they haven't got cancer after "treatment" and don't connect the treatment with the unreliability of the test. That might change if they find this thread.
The LEEP treatment is more difficult - there is nothing to send to pathology so these women will never know whether the treatment was necessary or not.

When there is just so much treatment for a rare cancer, this testing should never have been started without clear warnings.
It will be hard to turn this juggernaut around for many women, but women who've had normal tests, negative biopsies and who haven't started testing yet, are the people who'll feel more confident to act on this information. In a way the unreliability of the test keeps many women in the exam room...they're too afraid to forget about it or test less often. Of course, most wouldn't know their chance of getting this cancer, abnormal paps/pre-cancer cells or not, is so very low.

Barbra

Anonymous said...

Well, as it's christmas, and you've all been good girls (and boy, of course!), Santa has set up a blog at http://violet-to-blue.blogspot.com/ as a small gift. This contains links to pretty much all the articles that have been featured on this forum, plus various other bits and pieces on cervical screening. Hope people find it useful.

Anonymous said...

This is the best Christmas present ever. I found this site 4 hours ago and can't stop reading...I KNEW there was more to this screening and all the pressure. All the women having biopsies as well. I've asked my doctor a few questions over the years and have been fobbed off.
It was always the test WOULD or SHOULD be done...the idea of choice didn't apply.
It's 1.40AM here and I have to work in the morning. I know what I'll be doing over my Christmas break, reading all this amazing info that is unavailable anywhere else. Over the years I've seen maybe one moderately critical article in a newspaper.
A big thank you for an incredibly valuable site...this is a real find!

Joel Sherman said...

I have added the new 'violet and blue' blog to my links section.
The site does indeed organize the large number of references given on this blog in a usable way.
I'm surprised our benefactor has chosen to stay completely anonymous. She should take credit for it.

Anonymous said...

An amazing gesture...thank you!
You've provided a valuable resource for women; this forum and your summary are unique. I'm unaware of any other place where women can sit and read about the real benefits and risks of screening.
There is a lot of work in that summary, it goes to show how passionately many women feel about this matter.
Elizabeth

Violet to Blue said...

Thank you Dr Sherman. The reason I prefer to stay anon is the same reason I have disabled comments on the blog, and the hotmail address featured is not my normal personal email - screening and cervical cancer are emotive subjects, and I do not have the inclination or time to moderate the kind of abuse that I would be likely to attract. I certainly won't be sticking my picture up! I don't know if you have moderated out many aggressive comments on this blog, but as a man with a medical degree you will be perceived as at least arguing from a position of authority; as a woman with only (easily-dismissed) personal experience I have no such shield.

You will note that most women on here are either anon, or just give first names....even in a safe space such as this, there is a reason for that...

regards, Violet

Joel Sherman said...

Violet,
I think you will perform a valuable service by organizing all the references given on this thread (and elsewhere). I have not been able to keep up with it properly. It's a full time job. It will work well I think having discussion here and a full set of references on your blog.
But I have received almost no abuse from this blog. I post maybe 98% of the comments I receive (excluding technical issues such as duplicate posts). I edit and repost about 1% more for various reasons such as profanity (which doesn't offend me; I just want to keep the level higher). I originally thought there would be more problems running the blog, but as that has not happened, I have gradually increased the amount of personal info I reveal. I realize of course that women could have a different experience.

Here’s another reference from the BBC claiming that the incidence of cervical cancer doubles when sex is started at a young age. Of course the article doesn’t give absolute numbers which are likely still very small. It doesn’t take much to double a small number.

Violet to Blue said...

Thanks Dr Sherman,

I've added the BBC link under the "Rates of cancer..." section.

Anonymous said...

I suspect the only reason we're talking about this is because we have a Doctor standing at our side and a specialist at that.
The bullies stay away when the teachers are circling the playground as well. Same thing.
I saw a piece in the Guardian a couple of months ago - a woman with a history of sexual assault saying she wouldn't be having more smears. That poor woman was ripped to shreds. Women called her irresponsible, childish, a lunatic...one even said she'd be directly responsible for the deaths of any women she put off testing.
Most of these women have no idea what they're talking about..they have been spoon fed rubbish by women's magazines and the "information" leaflets provided to women. We have reached a place where women who choose not to screen must remain silent for fear of verbal attack from all quarters. The thesis, "It's just part of being a woman" is exactly right.
Some UK doctors have spoken up over the last 5 years and they have also come under attack. Women are then blinded by conflicting views and keep testing because fear is the dominant emotion at this stage. Perhaps, after finding out mammograms are not all they seem, more women are prepared to listen or look at the source material for themselves...have an open mind about pap smears.
I did expect Dr Sherman to attract some heat, but I suspect the sheer number of forceful comments from women has created a rare environment where the pro-screeners feel outnumbered. Even "Dr D" was careful. Obviously doctors know they can't deny Dr Sherman's statistics, you can make emotive arguments, but you can't deny the facts. This is a rare cancer and an unreliable test. To say otherwise, is just plain incorrect. You can't turn 11,000 into 200,000 and you can't write-off the colposcopy rates. The other major point...it's hard to deny that informed consent is totally lacking. Few doctors would be game to argue that women are not entitled to make informed decisions. If informed consent is respected for common prostate cancer, how can you deny it for a rare cancer?
It's still the case that no woman is "free" to choose or decline screening.
I hope that changes...
Elizabeth

Anonymous said...

Hi Dr Sherman,
Thanks for a great article.
This pamphlet does mention this cancer is rare....you're more likely to die on the roads BUT...it says that this cancer is rare BECAUSE of pap smears. Reading through this thread it sounds like it was always rare and pap smears have saved some women, but other things have affected the death toll as well.
My main problem with the pamphlet....they say that 30% to 50% of the 250,000 to 1 million women with dysplasia may progress to invasive cancer. If that's true, that is saying without smears and LEEP, possibly up to 500,000 may get cancer. That can't be right after reading the articles that talk about death rates in an unscreened population.
It's that sort of statement that does the damage. If that were true, it's terrifying. It's not true and should never be published. It's there to scare women and reinforce the need for regular smears. Caroline
http://www.cmdrc.com/Data/Documents/Pap%20Smears.pdf

Joel Sherman said...

Thanks Elizabeth. Yes I purposely framed the article with clear undisputed facts and avoided suggesting that anyone should refuse Pap smears. I chose informed consent purposely as the main point. Indeed it is very hard to come out against informed consent. After the article was posted, I asked Angela Raffle to review the article which she graciously did. She responded simply that "it's a good article." I am gratified that no one has been able to seriously criticize it except perhaps the one medical student who erroneously implied that everyone should be tested for AIDS because a professor recommended it.
I am surprised though that some of you seem reluctant to air your views publicly for fear of criticism. Most of you seem more than competent to defend your views and to shrug off the ensuing emotional criticism.

Getting back to women's issues though, here's a fascinating report from National Public Radio's All Things Considered. It concerns the use of Fosamax to treat osteopenia, a disease which is primarily foisted on women. I found the aggressive tactics used by Merck to promote and sell the drug to be shocking. And it takes a lot to shock me. Don't think that drug company abuse is limited to women though. The low testosterone deficiency syndrome is another drug company campaign in search of patients.

Violet to Blue said...

"I saw a piece in the Guardian a couple of months ago - a woman with a history of sexual assault saying she wouldn't be having more smears. That poor woman was ripped to shreds"

Thanks Elizabeth. Do you have a weblink? If so will take a look at with a view to adding to the Violet blog.

(p.s I want to state here for general information, I will not 'automatically' add links raised here to the Violet blog. Most of the links have been of very high quality so am delighted to add, but I ultimately reserve the right to quality control the Violet blog, just as Dr Sherman quality controls the comments made here).

Kind Regards, Violet

Anonymous said...

Hi Violet,
http://www.guardian.co.uk/society/joepublic
/2009/apr/17/smear-tests-mental-health
"Clare" actually printed a response to the criticism that she was irresponsible writing the article. It can probably be found using the "Guardian" search engine.
Elizabeth

Violet to Blue said...

Hi Elizabeth

As far as can tell already caught under the 'Newspaper Articles' part of the website:

Article by UK mental health patient who decided to cease having smears based on bad experiences with testing
http://www.guardian.co.uk/society/joepublic/2009/apr/17/smear-tests-mental-health

(the link includes the comments made by various online readers inc clareallen)

Regards Violet

Anonymous said...

Pap smears are of no value in post-menopausal women with a history of normal smears. Smears in post-menopausal women produce very high numbers of false positives.
http://www.annals.org/content/133/12/S61.full

Joel Sherman said...

Anon, that was a nice article from the Annals. Here's the full text if anyone wants to read this instead of the lay summary.
The article makes it quite clear that nothing was achieved by doing annual Paps on 5000 post menopausal women with prior negative Paps. Unfortunately the study only went on for 2 years. I wonder what the results would be at 5 and even 10 years.

Anonymous said...

Here's an article that says that Australia is considering changing the recommended age for a first pap smear to 25 because screening younger women is causing so much harm, including cesarean sections and premature births:

http://au.news.yahoo.com/thewest/a/-/national/6503507/start-pap-tests-later-in-life-say-australian-doctors/

Steve said...

I think the small number of informed people are placing some pressure on doctors. Australia has continued to over-screen women even though the risks have been well known to the profession for many years. They have the research from the UK and know other countries have more conservative programs. We even screen teenagers and the damage caused by screening in this age group is very well known. All of a sudden, we see changes in the States and some talk of change in Australia. The UK still leads the way thanks to people like Angela Raffle and Dr Fitzpatrick.
I'm pleased Dr Sherman and a small number of doctors are prepared to listen to women, look at the facts and actually prepared to do something to help change a very disrespectful and harmful system. The signs are hopeful. Every article written about this topic makes screening authorities and governments more uncomfortable and concerned about bad publicity, votes and liability.

Joel Sherman said...

Here's a full discussion of HPV from the CDC (Centers for Disease Control). It gives all the facts on HPV infection in lay terms.

Joel Sherman said...

I note that comments on my article on KevinMD blog are now closed. That's too bad as they were still coming in. We likely set a record on that blog.
My guess is that all comments on that blog are automatically suspended after a month or so; I don't think this was a conscious attempt to shut you ladies down. But you'll have to continue all posting here.

Joel Sherman said...

Here's a good balanced article from the UK as to what the appropriate age is to start cervical screening in young women. They recommend 25 rather than the US's 21.
They pay only lip service to informed consent but do mention it at the end.

Bella said...

"The Risk of Death by Age, Sex, and Smoking Status
in the United States: Putting Health Risks in Context"

Check out the charts on pgs. 849 and 850.

http://www.vaoutcomes.org/papers/JNCI_2008.pdf

Bella said...

There are a number of interesting articles here by H. Gilbert Welch about assessing medical risk and the potential downsides of cancer screening.

http://www.vaoutcomes.org/books.php

Violet to Blue said...

http://hurtbyadoctor.com/Cervical-Cancer-News-Information-Links.html

Blog I've just found giving whole bunch of articles (some of which have already popped up here) on cervical cancer screening, the recent changes to US screening guidelines, HPV vaccination etc etc.
Rgds, Violet

Anonymous said...

I thought some of you might be interested in herbalist Susan Weed's analysis and recommendations for cervical problems.

http://www.naturalhealthweb.com/articles/SusunWeed23.html

SNoonan said...

I`m disappointed comments ended on the other blog site just after the Dr made his post.
It frustrates me that a doctor will always say that this cancer was common or a major killer of women BEFORE screening started in the US, Australia or UK.
That is not true...
I`ve looked long and hard at death charts and graphs and this cancer was never a major killer, never even in the top ten.
Yet a Dr will always say that to scare women - acknowledging our rights in a hollow way and then frightening us with a statement that is incorrect.
I know that the 75% reduction figure makes many women think this cancer was a common problem and that is exactly what doctor`s want, they won`t mention actual numbers. I haven`t got the chart in front of me, but the drop since screening is 4 per 100,000 to 1.9 per 100,000 (roughly)
If you consider other things that play a part in the decline like hysterectomies (one in every three women in the States) and the fact this cancer was declining by 1% a year before screening, the numbers saved by screening are probably even lower.
I disagree that men`s screening would be the same if prostate cancer had a pre-cancer stage. Men are not as reliant on doctors and can dodge them most of their lives. Women often need doctors for birth control and pre-natal care and then we`re a captive audience. I doubt men would allow coercive measures to flourish and become the norm. Men would simply object, avoid the football or other testing areas or take action to stop the pressure.
Maybe some doctors have accepted the propaganda and haven`t looked closely to get to the real facts rather than the fudged figures...although I feel it`s just more of the same old scare-mongering to secure coverage and targets.
Thank you Dr Sherman for your help. It`s taken a long time to get to this point, but I feel women are becoming restless for change.
We`ve had enough...many women have reached that stage even accepting the scare mongering messages. They`ll take the risk to get away from this harassment and harmful over-treatment. The real facts would give them some peace and reassurance that the risk of this cancer is nothing like the so-called figures provided by doctors. They have the right to know the risk they are taking is low to near zero.
It makes me sad and angry to think how we`re treated with screening. How can this be acceptable to so many people?

Joel Sherman said...

Yes SNoonan, it is too bad that the KevinMD thread is closed. If I knew how to contact Dr D, I would invite him to participate here. But if you have good references for the actual decline in incidence of cervical cancer following the introduction of Pap smears, please post them. I agree that it is a very important point. Maybe Violet has them on her site as well.

Violet to Blue said...

"But if you have good references for the actual decline in incidence of cervical cancer following the introduction of Pap smears, please post them. I agree that it is a very important point. Maybe Violet has them on her site as well"

Here's what I've been able to scrape up, I think they've all been posted before, and I stress I only have the data on my site so only have part of an answer. This appears to be the $million question about screening, and smarter people than myself will need to answer...(or get funding for the research to find out...)

Obviously there's a mismatch in data (one covers the USA, the others the UK...):

1) this one attributes all falls in C.cancer since 1950 to smears:
http://www.nccc-online.org/patient_info/pap_tests.html

2) The Angela Raffle article is more nuanced: "What is already known on this topic - Since the mid-1980s incidence of and mortality from cervical cancer in women born since the 1930s in England and Wales has fallen; screening is the most likely explanation"

but also

"We carried the projections forward to 2011 because abnormality detected at screening theoretically predates invasive cancer by up to 15 years. The cumulative total tested in each cohort was used for the forward projections and as the denominator for converting numbers to rates. By assuming that the recent downturn in deaths is entirely a screening effect, and that lifetime risk is higher in women born since 1950, we ensured that we did not underestimate the benefit of screening. We then compared these estimates with the incidence of abnormality detected at screening.
Numbers of cases and deaths with screening
We estimated the numbers of cases and deaths with screening in the study population by applying unadjusted incidence and mortality for England and Wales by age and by birth cohort to the cumulative numbers tested within each birth cohort and each five year period. Because all cohorts nationally are now well screened there are few data on which to model incidence predictions beyond 1996.13 For our study population we predicted deaths with screening by assuming that after 1996, 60% of the modelled deaths without screening are averted. This is based on the finding that in 1997 over 60% of deaths from cervical cancer in women under 55 seemed to be prevented by screening.3 It is highly unlikely that detection and treatment of cervical abnormalities during 1976-96 in our study population could have yielded greater benefit than this estimate"

http://www.bmj.com/cgi/content/full/326/7395/901?ijkey=kndK1dePPBERM

And finally this:

http://www.cervicalcheck.ie/_fileupload/Downloads/Quinn_Effect%20of%20screening%20on%20incidence.pdf

...so if we're looking for a simple graph I'm not sure such a thing exists - I've heard here and there about C.cancer rates dropping before screening was introduced, or in developed world areas where there was no formal screening introduced. Any reasonable links welcomed...

Leeza said...

Because there was never a proper evaluation of this test before it was introduced, we`ll never know the answer.
We do know this cancer was in fact, uncommon, by looking at death rates before screening. Of course, a few doctors say that this cancer would have "taken off" if not for this test with the introduction of the Pill, promiscuity and reduced use of condoms. That is unproven and just their hunch...or just another way of scaring women into testing.

I do know the number of negative biopsies says something...only a few women know negative biopsies represent over-treatment. Doctors would know though...
I know the ads and brochures in Australia and the UK did not reflect the facts, not even close...we`re a tiny bit closer to the truth in the UK now, miles away in Australia. Most Aussie women are still completely misled as to the value of this testing and it`s reliability.

I work in a doctor`s clinic in Australia (and have worked in the UK) and feel guilty about the info we give women - we deliberately mislead women - covering our female patients means we get thousands from the Govt and the Clinic now relies on that money. We even screen ineligible women if we`re short - women with no cervix, virgins - no woman is safe is we`re short on numbers. This is not about health and rights, it`s about money and bringing down the small death rate to justify the millions spent on this campaign. Harming women isn`t a factor at all.
It is unethical in lots of ways and makes me sick to my stomach. I feel like a liar on a daily basis. The Dr`s all lie as well...it`s the norm with women and screening. Thank you Dr, at least one Dr cares about this unsatisfactory situation.

Joel Sherman said...

I'm just beginning to go through the links Violet gave for the fall in incidence of cervical cancer after Pap smears were introduced. Here's one I teased out of her first reference. (It was very hard to read on the graph given.) But it is interesting in several respects:

The statistics start in 1975, well after Pap smears were common in the US so there may well be multiple other factors. But the first graph from which I derived this reference shows a large drop in incidence. However, there is a much smaller drop in mortality suggesting that many of the 'cervical cancers' picked up were in fact not going to lead to invasion and death. That is similar to what has been found from mammography screening, that many of the 'early cancers' picked up will in fact not lead to metastatic breast cancer.
A disclaimer, I'm not a statistician, and these statistics can be difficult to interpret, but I agree that there is reason to wonder how much of the drop in incidence and mortality is due solely to Pap smears.

Violet to Blue said...

Hi All - trust you all had a good xmas.

I'm thinking of putting a new section on the Violet blog re: practical steps women can take to deal with a situation where they're being coerced into healthcare. Their legal rights as a patient etc. If anyone one has good links it would be appreciated.

Dr Sherman your professional opinion would be appreciated here -
presumably there are standard protocols for patient consent and rights to refuse treatment in your area of medicine? If so is there any reason why they wouldn't apply to gynaecology?
rgds Violet

Claire P said...

I have watched my friends and family suffer from over-treatment for the last 30 years. At first I felt quite afraid assuming all of these treatments were from pre-cancer. I always accepted the risk and only saw a lovely Asian female Dr - very gentle and kind. Although she had information and brochures in her waiting room, she never mentioned pap smears to me. I have never asked for the Pill so that probably helped as well. I had a few unpleasant experiences as a teenager and young woman and as a result, I`m protective of my privacy. I also resent the way all women are supposed to agree to this invasive test without a peep of protest or even free to ask for information or choose for themselves. I`m now 50 and it horrifies me how many women have been through colposcopies and biopsies. Some have found it an ordeal, others found it painful and upsetting...it`s always a negative in your life. I`ve always doubted this was necessary or felt there was much more we weren`t being told...
This forum has answered so many questions that have haunted me for decades - thank you so much for this information.
I saw on another forum - a paternalistic and patronizing one - a woman saying that cervical screening was like sorting avocado the wrong way - cutting them all open looking for the rare bad one - when you find the bad one, you triumphantly announce you found a bad one and hope like hell no one notices or asks questions about the countless mutiliated, healthy ones lying at your feet.
I think that woman is right...so much heartache and pain caused to women to help the few who`d actually get this cancer.
I think it`s madness and will never agree to test.
No one accepts a woman declining this testing - we`re ridiculed and admonished like criminals - yet we are doing more to protect our health than women who accept the medical version and blindly screen. Even if I have to do that cautiously and silently, it`s worth it for my health. Nice to have the very rare opportunity to have my say and vent after decades.
You are providing women with answers that have been denied them forever - a huge contribution to women`s health. Thank you!

Elizabeth said...

Violet,
I doubt you`ll find much...I`ve seen advice to doctors on strategies to force women into screening over the yrs and in the last 5 years, a few statements on informed consent on UK sites. I think it`s all lip service though, because the incentives for numbers screened still apply and the risk information given to women is still inadequate. Few women can give fully informed consent.
I think it`s a matter of getting the word out, arming women with the facts. Each woman has to challenge her Dr.
I think mentioning informed consent is a good first step...that will put the Dr on notice. I`d also mention that all cancer screening has risks and you`re aware this is an uncommon cancer and a test that produces false positives that lead to high levels of unnecessary and possibly harmful treatment. I found one Dr tried to sweep over my comments with, "it`s a terrible death"...I agreed and mentioned that unnecessary cervical biopsies are also very unpleasant. I`ve mentioned the financial incentives a few times as well and that makes Dr`s very uncomfortable - we`re not supposed to know about conflict of interest. I don`t go into figures that can be challenged and rely instead on Dr Raffle`s stat`s - they hate that, Dr Raffle is a consultant to the cervical screening program, one of their own, so that usually ends the pressure. I also told a Dr a few years ago that just as men are entitled to reject prostate screening, for a very common cancer, I think women have the right to reject screening for a rare cancer.
The "it`s only rare thanks to screening"...I say that is a debatable statement...the death rate was dropping before screening and other factors are ignored.
I don`t mention my low risk because doctor`s grasp at that - many argue all women are at risk and there are no degrees of risk. I disagree with that - I think there are low risk women. If a Dr is rude or won`t listen, then it`s time to find a new Dr. I think women should report any coercive conduct to the Medical Board or GMC.
I thought the article over at Kevin MD was a huge success...I think more people are thinking and talking about screening. More women seem confident enough to speak out as well...I`ve noticed on a few sites fairly angry comments. A very healthy sign!

Elizabeth said...

One further comment...some doctor`s argue that the risks of testing are "worth it" or the benefits exceed the risks -
I think that is a matter for the woman to decide, not the Dr. I`ve also heard Dr`s say the treatments are "minor" in nature - once again, a matter for the woman. I certainly wouldn`t consider these procedures minor.
If you can`t find any articles providing advice to women, perhaps compiling a list of questions, answers and responses might be helpful. Dr`s ambush us with "facts", whereas just mentioning informed consent may be enough with some doctors.
Dr`s are prepared for comments like, "it`s embarrassing" or "I don`t want it" or "I`m low risk"...they`re not expecting facts. I`ve found combining informed consent and the conflict of interest provides great protection. I don`t mention the conflict in a challenging way, but simply say I disagree with the govt paying doctors to reach targets. One astonished Dr said to me, "not many women know about that...how did you find out?"
I thought that was telling...

Violet to Blue said...

One for breast mammography screening:

http://ehrenreich.blogs.com/barbaras_blog/2009/12/not-so-pretty-in-pink.html

Joel Sherman said...

Here's a brief article on the KevinMD blog about the politics of cancer screening in the US. It's not a surprise, but it does point out all the difficulties we will have getting rational screening criteria. The big mystery is why this is only true for women's issues and not for men's.
I note the other day that Kevin published a list of the 10 most popular topics of last year. Don't know what he based it on, maybe the number of views. My article was not among them, but out of curiosity I looked at the 10 and found that my informed consent article had near 3 times as many comments as the most commented article in his group of ten.

Bella said...

Dr. Sherman, My guess is that Kevin based his 10 most popular posts on the numbers of views. Yours probably did not make the list only because it was posted so recently. In a few months, I bet it will be one of his most popular posts. I'm astounded by the response it received. It gives me so much hope. Do you have plans for more media exposure?

Joel Sherman said...

Violet, (from 3 days ago) you asked whether there are standard protocols for consent in gynecology. Informed consent is not specialty specific though obviously the alternatives and hazards to any procedure are. I have a thread here which may give you some references on informed consent, but there are many other references and they are easy to find. Basically it is incumbent on any doctor to explain the risks and alternative treatments for any invasive procedure and that applies to all of medicine. It just doesn't seem to get applied to some traditional and 'accepted' procedures such as Pap smears.

Bella, you are probably right that Kevin's list includes views made in 2009 only and not ongoing views in 2010. I suspect there will continue to be viewers of that thread. I have no plans for further media exposure. Don't know where I would go. The article is an opinion piece, not suitable for a journal. If you have any further suggestions as to where to go, please post them. But you women can and have helped your cause by publicizing this thread and the article. Keep it up!

Annie said...

I wanted to say something about your article. I see comments are closed so I`ll respond here.
I have resented for years the way women are virtually demanded to have pap smears and later in life, mammograms. We are treated as a collective group and it seems we have no individual rights.
There seem to be those women who just accept this thinking and do as they`re asked to do...they front for smears when directed to do so. They also accept everything they`re told by doctors.
Then there are those that avoid smears for all sorts of reasons and live on the fringe, trying to get medical care around pressure for pap smears. Then there are a tiny number of women who have the facts or personality to fight back...
I really hope that Doctors like Dr Sherman and other informed women can lobby for change. At the very least doctors should not be allowed to mislead us by "fashioning" statistics and we should be given risk information. I personally believe we all have a right to decline all cancer screening. How can it be wrong to look at the positives and negatives and choose for yourself? Individual health should never be jeopardized for the sake of reducing an already small death toll.
I hate to think about what happens to healthy women every day. My friend had a day procedure recently and the waiting room was full of 20-something women. Something is seriously wrong with medicine when it`s okay to interfere with huge numbers of women, to cut away or burn off cells when the risk of cancer is tiny AND not even mention that fact to them. My friend had a negative result, but is sore, bleeding and fragile emotionally. I`ve given her this link and encouraged her to read about the risks of screening women under 30. (and all women)
I think it`s bad that this information is almost impossible to find elsewhere. I did some reading for my friend and found nothing...the links from this site are the ones we need and they are not readily available.
I don`t screen and I cannot tell you how grateful I am to all the contributors here and to Dr Sherman for giving me the means to make an informed decision. One of the few women who can do that....thank you.
If I choose to screen one day, again, it will be an informed decision. This information has changed my life - I feel in control and no longer afraid of the ever-present threat to my health, rights and dignity. I have the answers!

Anonymous said...

A contribution to this fine site.
An article written by a Dr that discusses the fear caused by screening and considers whether screening is worth the worry it causes countless women.
http://www.independent.co.uk/life-
style/health-and-families/health-
news/cervical-screening-part-2-
abnormal-smears-not-surprisingly-
set-the-alarm-bells-ringing-about-
cancer-but-screening-itself-is-to-
blame-for-spreading-fear-1274918
.html

Joel Sherman said...

That's a nice article, Anon.

Anonymous said...

I think your article fills an awkward gaping hole. The profession should be ashamed of this gap as it represents our rights.
How many women are asked whether they want to screen?
I recall at 18 a Dr saying I'd have to start paps. It wasn't an offer or something that was up to me. It was like paying taxes, a fact of life. You get into big trouble if you don't have paps or don't pay your taxes.
At visits I was asked whether I was up to date or due for one...it was always assumed I'd have them and have them yearly. I was never given any sort of information.
It started to irk me about 5 years ago and increasingly I have avoided doctors. I'm healthy and only saw a doctor for birth control. Why should that mean cancer tests become mandatory?
I have no idea whether Pap tests are a waste of time or not, but know enough to say testing should be my decision, not a doctor's decision.

Susanne said...

""I recall at 18 a Dr saying I'd have to start paps. It wasn't an offer or something that was up to me. It was like paying taxes, a fact of life. You get into big trouble if you don't have paps or don't pay your taxes.
At visits I was asked whether I was up to date or due for one...it was always assumed I'd have them and have them yearly. I was never given any sort of information.""

My experience has been similar, Anon. I was even younger when the pressure started. I'd be at the pediatrician's office for a sore throat or other concern and that subject always came up. Fortunately, my mom was always in the room with me and knew that not only was the exam not necessary, but also something that would upset me greatly. She recognized the opportunistic screening for what it was and simply told them no. I shudder to think what sort of pressure I might have faced had I been in the room alone.

And the pressure hasn't stopped even in adulthood. There is no information given, the patient is not given a choice -- it's just the same message over and over of must, should, will, vitally important, etc. Upsetting when you really stop and think about it. I mean, shouldn't we all have a say in what is or isn't done to or with our bodies?

Susanne

Anonymous said...

Susanne, May I ask your age when the pediatrician tried to screen you?
That shocks me. I knew excess was the norm in the States, but screening young girls. These doctors need to be reported. The harm and distress they MUST cause can't be justified at a medical or clinical level. They need to be exposed and stopped. IMO, it amounts to child abuse.

Anonymous said...

Anon,

If I remember correctly, I was about 14 or 15. I believe my pediatrician at the time had an interest in adolescent medicine and perhaps that had something to do with it. She was a capable Dr. otherwise, but I think she, like so many other Drs. those of us on here have encountered, was caught up in this common practice of "requiring" patients to undergo these exams, whether they were beneficial or not. I guess it was just one of those things that had always been done and everyone else was doing.

It was always the same thing -- the nurse would come in with one of those awful paper gowns and instruct you to change into it before the Dr. arrived. And it was always puzzling as to why that was necessary for a sore throat or upper respiratory bug or what-have-you. I am so thankful my mom was there with me to help me speak up, as I doubt I could have been as firm in declining had I been by myself.

Anonymous said...

Susanne,
Your mother is to be congratulated, it takes a lot of strength to stand up to doctors. I think most of us have felt angry at least once in our lives by going along with something that made us uncomfortable and kicking ourselves later for just allowing it to happen. The consult situation is hard for the patient, we're often undressed and in a submissive position...the Dr has the authority. We need to remember though that Dr's are not free to roam at will over our bodies. We should refuse anything we don't want...at all or with that Dr.
I allowed a breast exam as a young woman. I saw the Dr with the flu and had no breast complaint. That exam still bothers me, mainly because I allowed it to happen knowing it wasn't necessary. It was opportunistic, my breasts were there and the Dr decided to examine them. I don't think he would have bothered had I been 65.

I only saw a female Dr after that...but the pressure of screening has led to a breakdown between myself and the medical profession. I can't be bothered with them any more.
I doubt it's possible to see a Dr and get health care if you refuse screening.
I think many of us "turn off" in the consult room and that has empowered doctors. We need to be proactive, not put ourselves in awkward/vulnerable positions with Dr's we don't know and trust and try and stay in control.
Sometimes a principle is more important...someone on this thread mentioned women have the "right to bodily autonomy". She put into words exactly how I feel. That means though that little medical care is available or every consult is a battleground...which is exhausting.
Screening a 14 or 15 year old girl is plain negligent. Even if sexually active, cancer in that age group is unheard of...
The excellent links here tell us something else...testing inappropriately and excessively is dangerous to our health.

Anonymous said...

Where are all the non-invasive and reliable alternatives to the hopeless pap smear? We hear about so-called breakthroughs and then nothing comes of it.
This article dates from 2000 and still nothing.
Could it be the millions of dollars created by excessive colposcopies and other treatments make an alternative to the smear an unattractive option for doctors? Men have a blood test now for prostate cancer and the men in my family no longer have digital rectal exams.
Women are still waiting...
They must recognise this test is very invasive and embarrassing. If they were really concerned about saving lives they'd be finding a better test..rather than continuing with this very unsatisfactory test.
http://nyp.org/news/hospital/pap-test-alternative.html

Anonymous said...

It's not enough that we are pressured constantly about paps, but now they are using our husbands to do their dirty work.
Where will it end?
Just plain offensive...
http://www.mamapop.com/mamapop/2009/12/pap-smears-the-gift-on-every-womans-holiday-wish-list-am-i-right.html

Anonymous said...

Anon #1,

I was not sexually active at 14/15-- and still am not nearly 20 years later -- but I guess the pediatrician operated under the assumption that all girls my age were or would be shortly. I'm not sure why such an exam would be necessary at that age. Something about it just doesn't add up.

And to the last Anon,

I too find that TV ad incredibly offensive and am appalled that CBS would run it. When are they going to run a similar ad about men and prostate checks? My guess would be never. I'm being a bit dramatic here, but it's as if we women are these fragile, diseased creatures that must be constantly stood over, monitored, poked, prodded, etc.

And if concern for women;'s health is really the reason behind these ads, then why is nothing ever said to us about heart-healthy habits (eating right, staying slim, being active, no smoking, etc.) by our healthcare providers, but this subject somehow always works its way into a consult? Cardiovascular disease kills five times as many women as breast cancer and about twice as many as all forms of cancer combined, yet we never hear a peep about it. I just don't understand.

Hexanchus said...

Anonymous of 7 Jan - 11:21am
( I think this was Susanne from the continuity of the thread)

You wrote: "When are they going to run a similar ad about men and prostate checks? My guess would be never."

That's a bet you would lose big time, as CBS was running exactly that type of add during the summer of 2009. Take a look at the "Mass Media" related topic on the main page of Dr. Sherman's blog - you'll find references starting around 17 August or thereabouts...

This isn't a "men vs. women" thing, so please don't make it one. Both genders are victimized by the promotion of unnecessary and unreliable screening tests by the medical industry. Yes women have been more affected in some ways, such as being figuratively held hostage if they want access to things like hormonal birth control. They don't have the same kind of threat to hold over men's heads so they are less affected, but men still get pushed to get the screening exams. By contrast, women are almost always accommodated without question when they request same gender providers for intimate exams or procedures, while men are scoffed at, derided and rarely accommodated when making the same type of request.

To anonymous of 10:16am:

Be careful what you wish for.....the PSA blood test you mentioned for prostate cancer is every bit as unreliable as the PAP smear, and based on some of the statistics I've seen, maybe even more so.

So what's the bottom line? IMHO, men and women need to work together to get the health care industry to recognize and respect our right of self determination in making health care decisions for themselves. We do this by holding their feet to the fire. Knowledge is power, so first take the steps to inform yourself. There are some excellent informational resources that have been mentioned on this blog and that I believe Violet Blue has collated links for most of on her site.

When a provider tells you that you need a pap smear, PSA or other screening test because they save lives, simply tell them something like "You know, that brings up something I've been meaning to ask. I really don't feel I have enough information to make an informed decision on the true benefit versus risk of that test. Can you provide me with solid evidence such as published study results to back that up, including the sensitivity, specificity and positive and negative predictive values of the test?.......Oh, and I'd also like complete and accurate information on the risks involved, including the possibility of undergoing unnecessary procedures due to false positive results, including the cumulative risk over time."

You'll want to do this in a calm, cool, friendly conversational manner. The response, once they pick their jaw up off the floor, should be interesting.

Anonymous said...

I agree, Hexanchus. I wasn't trying to turn this into a men vs. women debate at all. I've just never noticed the same kind of pressure being applied to men over similar exams. It seems we women are more often shamed, scolded, frightened or bullied by our healthcare providers, other women and the media into having screening without being given a choice or any risk/benefit information. It is frustrating, to say the least. Bottom line, no one -- man or woman -- should face this kind of pressure. We should all have a say in what is or isn't done with our bodies and no one should give us any grief for whatever choices we make in regard to screening.

Hexanchus said...

Anonymous,

You wrote:"It seems we women are more often shamed, scolded, frightened or bullied by our healthcare providers, other women and the media into having screening without being given a choice or any risk/benefit information."

I don't disagree, but I do wonder why that is. Are women perceived as more malleable and easier to influence or persuade than men? The "why" is important, because in order to effect change that is what needs to be addressed.

Why does the medical industry push PAP smears and why are they so resistant to reducing the frequency of testing, even though hard evidence supports that.

I have one theory - bear with me and let's look at some numbers:

There are approx. 300,544,200 people in the U.S.
Of that, 61%, or approx. 185,331,962 are in the 19-64 age group.
Of that group, 51%, or approx. 93,499,300 are female.

82.8% (77,417,420) of females over 18 report having a pap smear within the last 3 years, and 55% (51,424,615) with no abnormal findings having pap smears annually.

The charge for a pap smear is between $50 and $200 - it depends somewhat on if the lab fees are included or billed separately.
The actual cost of the cytology (lab analysis) is approx. $15.

For the sake of argument, let's low ball the billed charge at an average of $100 per test including the cytology. Looking only at the group reporting annual tests, by reducing the frequency to once every three years for only this group there would be roughly 33,940,245 fewer pap tests performed. At $100 per test, that represents over 3.9 billion dollars in reduced revenue to the medical industry - a pretty significant chunk of change if you ask me. Yes most of this is paid for by insurance, but ultimately we all pay for it one way or another.....

Anyone ever heard the phrase "follow the money"?

These are hard numbers. all of the statistical data, with the exception of the 55% annual testing rate for women with normal results and the cost per test, can be found on the statehealthfacts.org web site. The two exceptions are from other published studies.

Violet to Blue said...

Interesting figures Hexanchus, will look at the statehealthfacts website.

Unfortunately I think that a lot of the pressure put on women is just because we're an easy target due to basic female physiology/sexual psychology. I really doubt most men would submit to regular invasive examinations from an early age (unless for a very specific and actual medical problem). A 50 year old man being invited for prostate screening is very likely to be confident and experienced enough to say "you want to do what! Why?!". Not to mention he's more likely to be used to having his bodily autonomy respected. Young women, sexually active women/women with children on the other hand - well, you're used to having someone 'up there', right? Or you're going to have to get used to it anyway as you're a woman - so how about we do this simple medical test whilst we're here?

Interestingly I think one of the big issues with cervical screening is that it then proceeds to ignore two fairly major elements of female sexual psychology: 1) that 'consent' is pretty fundamental unless you want to damage someone emotionally, and that 2) most women learn pretty quickly (occasionally from painful experience) to not let anyone aggressive/manipulative/coercive/insensitive near them physically, and indeed a fair chunk of 'women's intuition' is based around sussing out and then avoiding men who behave in this way.

(I will state here also that men also do get the short end of the stick in many ways as well, regarding privacy and respect etc - I second the not wanting to make it a gender-bashing discussion)

Joel Sherman said...

Here's a fairly good article on the pros and cons of breast and prostate cancer screenings from the AARP.
Too bad that so few groups are willing to talk about cervical cancer screening.

Elizabeth said...

I think Violet makes a good point and thanks Hex for those stats...the colposcopy business is worth a fortune as well and when you consider annual screening sends almost all women for colposcopy and usually some form of biopsy, that's a lot of money!
Violet's point: the pressure on women starts early and many women are not mature enough in their late teens or early 20's to stand up to Doctors. Also, the almost universal acceptance that all women MUST have smears - people are shocked if you decline. You see that everywhere - women reluctant to tell others they don't have smears or calling themselves "silly" etc or making an excuse and felling guilty. Also, the reaction they receive - open hostility, name calling...
I've observed these things over many years. I just don't see that with prostate screening.

The difference?
Women have been subjected to a carefully engineered campaign to recruit all women in the "target" population - coverage has been the only consideration and its been pushed aggressively. Many of the tactics used in the UK became coercive and amounted to harassment. I think that's the reason the GMC finally felt compelled to act.

Paying doctors to reach screening targets is the MAIN reason for this aggression. These payments are big money for each surgery, so the Govt is involved in the abuse of women's rights as well. They KNOW this expalins much of the unprofessional conduct we see around us. It still continues...nothing much has changed at the surgery level.

I totally agree that informing women is the answer. If women have the facts, they can meet this pressure head-on.
I really think the thesis, "Just part of being a woman" explains the position very well.

The payments system only applies to cervical cancer and I think the pressure is the greatest with this screening...even though this cancer is a very small problem compared to breast and prostate cancer. Why would the pressure be greatest for the rarest cancer?
IMO, political reasons.

If a payments system were introduced for prostate screening, more men would be pressured, but it's simply harder to round up and pressure men.
It's harder for women to avoid doctors and many women are reluctant to question or challenge doctors.
Many women are "recruited" early and go along with it, we're "caught" due to the need for contraception, during pre-natal appts, menstrual or menopause problems. Also, many women have "treatment" for pre-cancer and walk away convinced they were saved by the test. They became ambassadors for the program and fiercely defend it's need and effectiveness.
I see that too...so many young women say they had cervical cancer.

The other reason for the payments system - the Govt uses a lot of tax dollars to screen women for a rare cancer. Unless 80% of women screen, the death rate won't fall...so they need to screen 80% of women to justify this huge expenditure. Thus the payments and the pressure.
This was raised in the UK Parliament recently - the politicians SAY the pressure is unacceptable, but none of them would want to see screening numbers drop...not because of health considerations, but because of any backlash - spending huge amounts to achieve nothing. Achieving little is still fine, if you can package it up to look impressive...we've reduced the death rate by 50% or 75%.

I therefore think change will have to happen at the individual woman level. Informing and empowering women to force respect for informed consent.
Also, lodging complaints when informed consent has been ignored or breached - the GMC must act now...but they can't act if they don't know which Dr's are continuing to behave unethically. A friend recently filed a complaint against a Dr and the GMC acted quickly. They have made a stand and would not want any publicity that it amounted to lip service - they now HAVE to act on these complaints to save face.

Elizabeth said...

When a cancer is so uncommon and a screening program would be ineffective unless you screen 80% of the target population AND, the test is unpleasant AND, unreliable, causing huge amount of potentially harmful over-treatment...it brings you back to the question: Was it ever a suitable mass screening test?
Some say it should never have been approved...and would never be approved today.

Bella said...

Elizabeth, what you said about so many young women being sure they had cervical cancer made me think of my friend. When she was 24 she was treated for "cervical dysplasia" with cryotherapy.

Several months later, she had some mid-cycle spotting and went to Planned Parenthood. The nurse practitioner there referred her to a gynecologist, but said that with my friend's history of cervical dysplasia, there was a "high chance" it was cervical cancer.

While my friend waited for her appointment, she walked around like a zombie for weeks feeling like she was going to die.

Of course, it was nothing. Most likely she should never have been "treated" in the first place at such a young age.

I truly don't think doctors understand the damage this test is doing to many, many women. And the vast majority of the women involved don't even seem to understand, because we've all been led to believe that the benefit of the test and treatment exponentially outweigh the risk of cervical cancer.

I'm curious, are you all hopeful that it's going to change? This blog is such a ray of light for me. But it seems like a huge uphill battle, especially if the answer is each individual woman taking a stand with her own doctor.

I would love to see some investigative reporting and media coverage of this issue in the U.S. (It seems like there's already some coverage in the British press.) Unfortunately, the reaction to the new mammogram guidelines made me see how unaware the general public is about risks involved with screening tests.

Elizabeth said...

It can be depressing, Bella...but I'm hopeful, I see positive signs.
It bothers me that the majority of women are still unaware of the real value of testing (it helps a tiny %) and the high risks (over-treatment).
It goes to show just how effective the campaign has been...the majority of women accepted the campaign completely.

If women see this information or Dr Sherman's article and other articles, it has a flow-on effect. It's a question of getting the information out there...gradually, we'll see a change.

The discussion we're hearing in the UK would not have happened, outside of medical journals, even 6 years ago. Effectively change was prompted by one woman making a stand and going to the media - Mrs Hazel Thornton.
It concerns me that the States and Australia are lagging behind...there is no real discussion (that women would hear about) in Australia.

I'm hopeful an Australian news program will do a story on informed consent and over-treatment later this year. I know their Govt is reviewing screening at the moment - it's harder to hide the effects of over-screening now that US doctors have reduced their screening recommendations. Aside from Germany, Australians are now the most over-screened women in the world.

Every critical and informative piece on the TV, in newspapers or on the Internet, reaches women.
This makes the screening people nervous. There is no doubt in my mind, most women harmed by a negative cone biopsy (or other treatment) could successfully take legal action. Few women could give informed consent at the moment and many don't even consent. (testing is mandatory for birth control pills in the States)

When Govt's and Dr's start to fear liability for over-treatment and that is more likely when women KNOW the facts, things will change. (I hope!!)
Even this forum is encouraging...most Dr's wouldn't permit this sort of discussion on their blog. (see the "Blog that Ate Manhatten" and that Dr's reaction to women who dared to question the value of testing)

Dysplasia rarely leads to cancer and pre-cancer cells rarely lead to cancer...we need that information out there as well. Most women have no idea that only a tiny 0.65% are helped by smears and a massive 30-95% of women will be referred for colposcopy. (95% for annual screening down to 30%-55% for 5 yearly screening)

Violet to Blue said...

"I'm curious, are you all hopeful that it's going to change? "

My current cynical opinion, for the UK at least, is that major budget cuts are on the way due to the economic crisis, and GPs won't easily hand over a regular source of income when funding's being cut left right and centre (don't believe anything David Cameron tells you he's going to do re: the NHS). The MPs won't touch it either - one scream of "Jade Goody!!" from the tabloids and they'll run for cover. It's political suicide. The best bet is to continue just doing what we're doing here - working through the grassroots. If the situation changes, it'll be because women demand it and the demand goes upward, not because change has come from the top.

The USA or Australian situation may be different, of course.

Violet to Blue said...

http://www.bradfordvts.co.uk/ONLINERESOURCES/10.1%20WOMENS%20HEALTH/cervical%20screening%20notes.pdf

Interesting to note that eligible women can only be ceased from the screening programme if they become "extremely upset and angry". Basically you have to be having hysterics before they'll leave you alone. This isn't even a pretence at informed consent...

Any permanent refusers (UK) been offered the "one on one counselling?" as they describe?

Joel Sherman said...

Here's a very long and detailed summary of the status of cervical cancer in Europe from 2008.

Bella said...

Elizabeth, thank you for telling me about Hazel Thornton. I'm amazed that one woman was able to make such a difference in Great Britain. What a strong role model for the rest of us who are concerned about these issues.

I found these stories about her.

http://www.nytimes.com/2009/03/31/health/31mamm.html

http://www.independent.co.uk/life-style/health-and-families/health-news/does-screening-really-save-lives-616085.html

Anonymous said...

Violet, That makes any talk of informed consent a nonsense...if you have to go to those lengths to refuse screening.
Getting your solicitor to send them a letter might be easier.
I know everytime a rare article appears criticizing cervical screening...an interview with a Dr connected with the program will follow...never meeting the criticism but saying something like, "we hope this doesn't deter women from screening or we'll expect an increase in the death rate from this cancer which would be unfortunate".
That is usually enough to scare women back into the program.
I really hate the way Dr's control women with their dishonest mind games.

For some reason I've fallen through the net. I didn't get a letter when I turned 25. I rarely see doctors and I move around a lot with my job. I've been left alone and I'm happy to lie to any Dr...they are dishonest so I can give them a white lie to save myself from this program that hurts most women.

Jade Goody was unlucky to get cancer, anyone is when they get a rare cancer. Looking at her life though, she is the very woman who might benefit from testing every 5 years from 25. Ms Goody sounded very high risk. It also sounded like she'd been put through an ordeal when she was a teenager. Teenagers shouldn't be tested and have treatment. Once again, the system probably turned this high risk woman away from screening because some doctors are irresponsible and screen to harm, with no concerns for the inevitable bad outcomes. If she had been left alone until she was 25, given all the info she needed that would have identified her as high risk, maybe there would have been a different outcome. When I read her story, I could understand how she was terrified and traumatized by that early "treatment" and decided to ignore further abnormal smears.
The whole approach with this screening is wrong.

I love this forum!

Anonymous said...

Why don't men need to remove themselves from registers and have counselling if they don't want screening?
My husband just said NO.
That was the end of the matter.
How can they require all of that when a woman doesn't want screening and still say it's a screening test and informed consent is necessary?
Doesn't this action cancel out the words, "informed consent"?
I looked at a bit of that report and it sounded like hunting down criminals. The wording doesn't sound right for a screening test.

Anonymous said...

http://sify.com/movies/fullstory.php?id=14747451

This is the bit I was talking about...Jade Goody had ablative therapy at 16.
Why is a 16 year old girl being tested for cervical cancer?
(sexually active or not)
I blame the excess and early trauma for her death.

Anonymous said...

"Why don't men need to remove themselves from registers and have counselling if they don't want screening?"

Particularly when prostate cancer is a serious problem.
Perhaps it is a politically driven campaign, never suitable and only works when you use coercion to test 80% of women and harm heaps of women.
Otherwise, why all the fuss about this cancer and not nearly as much about breast and prostate.

Betty said...

In New Zealand you'll find some mention of informed consent. This screening has an infamous history here and received lots of bad publicity.
A Dr did an experiment over a few years without telling patients - some were treated for abnormalities, some were not. Not much information is ever given to women, so I assume this Dr thought non-disclosure and experimentation was fine as long as women didn't know about it.

Over the years a couple of women developed cervical cancer. I think the research was to show almost all lesion regress or don't advance. Well, that's true, but a very small number do advance.
As a result cervical screening was put under the microscope - doctors saying the risks of developing cancer were tiny (trying to defend the Dr's actions) and talk of all the treatment for lesions that would never advance. (the experiment was for the benefit of all women)
We all got the benefit of that publicity.
It is possible for women to look at their sexual history and make their own assessment of risk and this screening and that's what should happen. The over-the-top promotion of this test is necessary to force as many women to screen as possible, when you're looking for a needle in a haystack you have to search extensively. Prostate cancer is so common if a large number of men don't screen, screening may still have an impact on the death rate. Cervical cancer screening is expensive when you look at the small death rate and so value for money means processing lots of women.

I think that Dr's arrogance has helped NZ women. My GP mentioned informed consent to me and asked me whether I wanted the test. There may be more honesty here as doctors and the screening co-ordinators are aware of the publicity and fuss that occurred after the non-disclosure came to light. Informed consent became a big issue and received a LOT of publicity. My low risk for this cancer means I'll consider my options for a few years more...at 27 I'm not ready to make a decision. I wouldn't allow testing until I'm at least 30 and if that happens it'll be infrequently. Every woman should be careful of this testing...the majority of women won't get this cancer but all testing carries risks. When the risks of a false positive are so many times greater than the risk of this cancer, it's hard to see the point of this testing. I think I'd be putting the money into research to find a cure for breast cancer, which takes the lives of many more women and confining this testing to very high risk women.

Joel Sherman said...

Here's a somewhat discouraging report about the use of biomarkers to screen for cervical cancer. The message is that the biomarkers likely do not become positive early enough to catch the cancer in a curable stage. That seems to be common for other tumors as well.

Janet said...

If doctors are sincere about informed consent then we need to let women know the actual risk of this cancer.
Very few women would realize it's fewer than 1% of women who are helped by smears. The over-treatment is important as well...which is the risk of testing.
Most women have no idea about either of these things and so informed consent is not possible.
The only way to get the message out is by trying to get it into the newspapers, on TV or on the Internet. A friend directed me to Dr Sherman's article and I found my way here.
I'm unaware of any other place that has so much honest information, most are ads for screening. It seems like the actual facts are suppressed to encourage all women to screen. If we're trying to help about 28 women in 250,000 (from that amazing article by A Raffle) then all women need to actually give their permission for this test - it's hardly a public health crisis.
To test women in ignorance and over-treat them is unethical and shouldn't be allowed.
Why do the medical profession take such liberties with women? Is it because most of us have babies so they think we won't mind being in stirrups? That is a terribly sexist attitude, if that is the case, we're all human and many/most women find this testing horrible. Many of us are modest and private people.
I don't see doctors unless it's for something general and I lie to avoid screening - any questioning and I say I was tested overseas last month or something like that...
I don't worry about cancer and prefer to deal with symptoms - I don't see why women can't reasonably make that decision, men do every day.
Even if I were high risk for this cancer, given the risk of over-treatment is so very high and only 1% or fewer women get this cancer, I'd prefer to worry about bigger risks to my health.
We need to change the attitude that all women must do as they're told, that is really offensive to me.

Bella said...

Has anyone else read "Confessions of a Medical Heretic" by Robert S. Mendelsohn, M.D., published in 1979?

He practiced for 25 years or more and became entirely disillusioned with the medical system. His analysis of it is scathing.

He makes a compelling, yet chilling, argument that modern medicine functions like a religion, and is often more harmful than helpful. He points out a number of once common procedures that he went along with and then found out are harmful - giving pregnant women DES and thalidomide, vastly over-prescribing antibiotics, hormone treatment for women in menopause, huge numbers of unnecessary hysterectomies and cesarean sections, advising mothers against breastfeeding, etc. The list goes on and on. And the frightening thing is that 30 years later quite a number of the procedures are still being done, especially those having to do with women's health.

A few people on this forum have surmised that doctors do risky procedures and tests because there's a lot of money involved. Money undoubtedly plays a role, but I agree with Mendelsohn that a lot of doctors also have a (blind) faith in the system.

Mendelsohn does not say much about the pap smear, but advises that all healthy people stay away from doctors for any sort of physical or exam. He argues that it is not just the procedures and tests that are risky but putting yourself in the vulnerable position of letting someone else tell you what's going on with you. He advises that if you do go to a doctor, you bring along family members; study your ailment extensively; ask dozens of questions about every procedure, prescription, and test; and get second and even third opinions. As I said, it's a scathing analysis.

Jillian said...

I couldn't agree more and yet most women seem to allow the most intimate and invasive procedures on a regular basis. I think most women seem to need the reassurance - they've been programmed that way or feel like they're being responsible or mature. Many are just plain scared.
The awful side effects of screening tests are unknown to most women...we risk our health every time we allow them...because it's true that few will be saved by the testing.
I think for myself and reject all cancer screening. I'm 45 and have never had a pap smear and won't be having mammograms. I don't understand why women give into these things without proper consideration.
My Dr gets paid to take smears and gets paid even more when she screens most of her patients. She knows I disapprove of that and accepts my decision. You have to be firm with doctors though, most think we have no right to refuse. I work for a trade union, so I'm used to confrontation.
I know lots of women who've had treatment for abnormal lesions and cells - it's absolutely crazy to treat all these women when the risk is so small. Yet keeping women ignorant and grateful saves their bacon - if the truth ever really gets out, there might be a riot - so many healthy women treated and such degrading, painful and damaging procedures. Although most women will tell themselves that they actually had abnormal cells that would have gone onto cancer - I guess it's easier to accept that, than accept you were fooled.
The profession has a history of treating women like that - nothing has really changed.
I don't fear cervical cancer or other rare cancers at all, and don't trust doctors one bit.
Women need to be less trusting and prepared to stand up to their doctors.

Jackie N said...

Interesting and unusual discussion - it's rare to see such frank discussion about screening, for women anyway...
My feeling: the introduction of the Pill was our downfall in many ways. It gave doctors power over us - if you want the Pill, you have to do as we say...
(I know it's more difficult for American women who think they need annual pelvic exams)
Prior to the Pill, many used condoms to avoid pregnancy and in the process, we protected ourselves from diseases and our cervix was protected as well...
There were fewer STD's, fewer urinary tract infections/cystitis, fewer everything.
The condom is a woman's friend and gives her a choice with screening.
You're not at the mercy of a Dr for contraception.

Condoms were ordinary quality until AIDS became a problem - when death was a consequence of unprotected sex, condoms got heaps better.

My husband and I has used condoms and fertility awareness for over 25 years.
My friends who relied on doctors for the Pill were frogmarched into screening and had other opportunistic exams like breast exams. I noticed many of my friends having breast exams ended up having benign biopsies, one friend has had three.
I firmly believe all opportunistic exams have risks...of a false positive and further testing or treatment. When doctors examine opportunistically they risk our health. Only exams medically required for the Pill or other medication should be carried out unless the woman asks for them and understands the risks.
I think the liberties taken with our bodies (well, not mine!) is unacceptable. It makes me feel like we're supporting the entire pathology and day procedure industry.
I agree with most of the comments here.
I knew instinctively that cervical screening would only help a few women and made a firm stand against it. I have no wish to have treatment for a false positive when there is virtually no risk of this cancer for me.
The idea that squashing your breasts and shooting radiation through them is helpful seems absurd to me and there is no way they'll be doing that to my body.
Women ARE far too trusting - look at these exams and tests with your eyes open - does it make sense?
Are these cancers a real threat to your life?
I also agree women should shop around for a Dr - not all doctors are driven by profits and power.
Thanks Dr Sherman - great forum!

Erica said...

I too love condoms.
I've never had cystitis or any gyn issue and I put most of that down to condoms. They do protect us from lots of things.
I find it sad that so many women feel uncomfortable asking their partners to use condoms. "They diminish his pleasure"...
We can buy condoms at the chemist, they have no side effects or health consequences, (aside from people with allergies to latex) need no medical exams and don't mean loss of control of your body (forced preventative health) - OR the Pill - it ties you to doctors, puts you through regular unnecessary exams and turns optional screening...into compulsory screening, and the Pill causes lots of side effects for many women and these women tend to have more biopsies etc as a consequence of the unnecessary exams and forced screening - it doesn't make sense to me that so many women go through that, rather than "diminish my partner's pleasure".

What about your pleasure? Your health and rights?
I would resent any man who expected me to go through that and risk my health so HIS pleasure wasn't diminished...it's selfish.
A man who loves you would understand why you don't want to buy into the status quo.
Even if the Pill were available at the chemist, I'd still be careful - why risk my health or put up with side effects when condoms are so easy, safe and protect me from heaps of health problems?
One friend had irregular bleeding on the Pill and had really awful day procedures to find the reason for the bleeding. She was told that the Pill breaks down the protective coating on the cervix making it more likely to be traumatized during sex. This was never mentioned to her - the Dr just put her on the Pill with no information. Another friend got cystitis during the first weeks of her relationship - condoms would have prevented that - she's been plagued with this problem for years - it keeps flaring up every few months.
Also, if your partner has an affair, you have protection from STD's - on the Pill, you have no chance. I read that condoms give 80% or higher protection from HPV.

I'm in a monogamous relationship and we make condoms part of our foreplay. We don't see condoms as a chore and my partner is richly rewarded for understanding how I feel and why I'm not prepared to take the Pill. Having an IUD inserted makes me shudder - I would never even consider it!

Dr's hate women who rely on condoms because we're out of their control - we can't be blackmailed or pressured...and we have great health!
My friends on the Pill are always at the Dr or having some test or other...I have great health and a fabulous quality of life.
Women matter too...don't let your partner dump the responsibility of contraception onto you.
We use condoms and also the Billings Method. No accidents either....who needs the Pill? It causes more trouble than it's worth from what I've seen...
Of course, I understand it helps some women with menstrual and other problems.

Anonymous said...

A Dr once told me women who use natural methods or condoms were bad for business.
The Pill and other methods keep you going back and means the Dr can set the schedule. Many doctors make all sorts of things compulsory for the Pill. One Dr on campus even requires young women to have breast screening or the Pill is refused.
I suspect he has an interest in the screening place. No recommendation includes young women. He says he's thorough, I think he's dishonest and unprofessional. Many of the young women who have seen him have had ultrasounds and biopsies. None of my friends will see him now...he has a reputation. I guess he still sees enough patients with new women coming through the door.
I wanted to take the Pill, but wasn't prepared to have all the invasive stuff that is required to get it...so we use condoms as well. They kill spontaniety for us and are a bit messy, but not that bad.
CB

Anonymous said...

http://www.futuremedicine.com/doi/
pdf/10.2217/whe.09.69

An article that says screening teenagers is NOT a good idea, screening 20-24 year olds doesn't work and causes lots of interventions for lesions that don't become cancer. It praises the test for older women and tends to play down the harms of over-treatment. I hate the way doctors do that...compare the relative harm of biopsies with full blown invasive cancer. When the latter rarely occurs and the former is very common, it's a big point and should never be dismissed. The harm of an abnormal smear and treatment is now well known - high anxiety, fear, depression, sexual dysfunction, PTSD, premature delivery, c-sections and possible prolapse and incontinence. (the last two later in life)
Given these procedures are very common and cervical cancer is not common at all, I believe informed consent is MORE important with this screening. Instead, it's rarely mentioned...
Not good enough.
I've enjoyed looking at the huge number of excellent references.

Anonymous said...

http://www.nhs.uk/news/2010/01January/Pages/
breast-cancer-screening-reviewed.aspx

More bad publicity for breast screening. At least we're able to read about this now...doctors have known for years, but thankfully, it's harder to keep these things quiet these days.
Any woman having mammograms is a brave woman indeed or totally in the dark - I find all of this very worrying.
I'm not having mammograms.
I'm anti-screening - I've seen the harm first hand with family and friends.
Julie

Violet to Blue said...

In my opinion Zoe Williams is often A Journalist In Search Of A Coherent Argument, but this covers the emotional fallout of false breast screening positives, plus comments from readers.

http://www.guardian.co.uk/commentisfree/2010/jan/20/emotions-tumours-breast-cancer-screening

Anonymous said...

I'm so happy and relieved that the risks of breast screening are finally getting out to women. Of course, many women are so afraid of cancer, they'll have anything done and accept the risks.
I think the screeners play into those fears by making dishonest & flippant statements rather than addressing the concerns of educated and expert medical and scientiful opinion and research. You get, "we're concerned because this may keep women away and we'll see an increase in the death rate".
That is unfair if they don't meet the arguments of the experts - it just confuses women. Several of my friends are in a dilemma with breast screening - concerned and afraid to have screening, concerned and afraid not to have screening. How does that help?
I think the more women know about screening - especially if they do their own reading, the greater the chance they'll make an informed decision either way.
At least we know about the risks now.
One sound piece of research links screening itself to increased rates of breast cancer. That really has pro-screening women worried - the test may actually cause cancer. I think more information on that research will have a big impact.
The number of women having mammograms in the UK is falling and in Australia, they are really struggling to hit a 75% target. Empowered with knowledge, women are able to make a stand.
It's easier to avoid breast screening as doctors aren't paid to reach targets and they don't actually do the screening, so they have less control over women - they can't ambush and pressure us during consults and can't make it a pre-requisite for something else. Ironically, the most pressure is reserved for a cancer that affects a very small number of women. (cervical)
All very positive and I'm sure the screening authorities are very concerned...I can never forgive them for their incredible arrogance in the face of clear evidence of harm and their patronizing and paternalistic attitudes toward women and total lack of respect for informed consent (our rights) and our health.
Elizabeth

Anonymous said...

I have been reading this forum for the past couple days and I am shocked. I recall my girlfriend explaining to me that she had an abnormal pap smear a few years ago. She is 30 now and in great health. I do believe she is brainwashed by the whole pap smear, pelvic exam business that she feels like she had to go every year for reassurance. I'm just wondering how often this happens to women in their twenties. Is is normal to have an abnormal pap smear at least once in their lives?

Another point I wanted to bring up and I'm not sure if this is the right forum for it is....
Male gynecologists and doctors suggesting pap smears, pelvic and breast exams for their own pleasure. No one can tell me that this isn't true. I for one am relieved that she sees a female gynecologist now who once tried to talk her out of in IUD because of the possible side effects. I think opportunistic male doctors will perform even more pap smears, procedures etc. just to take advantage of patients they find attractive.

Matthew

Violet to Blue said...

Best thing Matthew if you're concerned is to recommend she read this site and/or around the whole subject of screening, and let her decide for herself if she wants to continue with yearly exams or move to something else - ultimately it should be her informed decision which I think is really the point of a lot of the discussion.

Abnormal smears are very common, especially in women who are screened with high frequency. If you read some of the links you should easily get the numbers.

In the UK most smears are done by (usually female) practice nurses. There are indeed sexual predators amongst doctors - as there are amongst all large random groups of men - but the vibe I get is most male GPs were quite happy to pass the actual screening task over to the nurse! I've always felt that the money involved plus general insensitivity and a bit of unconscious misogyny was the biggest cause of the issues with screening, rather than deliberate sexual intent. Others may of course have different opinions and experiences.

I'll leave the USA-ers to comment on the USA side of things...

Joel Sherman said...

Mathew,
Yes, there are a few sexual predators among doctors, even a rare female one. But I have been impressed by how few of the complaints on this thread have any relation to the gender of the provider. The training of male and female physicians is identical and they use the same guidelines. The vast majority of them push Pap smears as what they perceive as the standard of care. Most gynecologists will do 10-20 pelvic exams a day in the office. If they ever had any prurient interest in doing them, they lose it very fast. Female gynecologists are plentiful nowadays to care for women who are concerned about this.
And Violet is correct, most of the internists and GP's I know would rather not do these exams, often relegating them to nurse assistants or referring them to gynecologists. In my opinion, male sexual predators are a very small part of the problem. I think many men are more worried about this than women.

Anonymous said...

Mathew,
There are some male doctors who take advantage, but it's dangerous...they need to be very careful. In Australia, these complaints find there way to the Police more and more and male doctors can't rely on the protection of their professional group and the Medical Board. Not all females are at risk, it's usually the young and/or attractive. A Dr might be an amazing and professional Dr to the bulk of his patients and then slip up with one...
My sister worked for DPP for 12 years and handled some of these cases.

Blatant sexual assault does happen, but thankfully, these Dr's are caught...eventually...they still get away with it for longer than they should, but it's better than years ago, when it might go on for decades or an entire career.

A male dermatologist was struck off and imprisoned a couple of years ago after blatant sexual assualts. It did take a few years to take him out of the system even though his conduct was blatant. Unfortunately, many women leave the consult and take no action...this enables these Dr's to carry on and even become more brazen in their assaults.
I think every woman should report unsatisfactory/suspect/predatory conduct.
Of course, pap smears and the full gyn exams that American women have, place the woman in a very exposed and vulnerable position anyway. It's possible some male doctors derive enough satisfaction from the exam alone (with some patients) and don't feel the need to go further.
I think young women in particular should see a female Dr for intimate exams, unless they are very trusting of the Dr. Beware of doctors who don't use chaperones (many in this country) and unknown doctors.
Why risk it?
Any male Dr putting pressure on a woman to have smears or breast checks should be reported. I think screening programs and incentive payments have empowered some suspect doctors. Some of these doctors have been reported and have been warned. Screening programs and payments do not justify excessive pressure or coercion.
Women should never "submit" to these exams because of pressure from a doctor. A genuine Dr would provide you with time to consider whether you want the preventative test or refer you to a female Dr in the surgery or a nurse.

Reading through this thread has been highly informative. I thank the knowledgeable contributors and Dr Sherman.
Abnormal paps are common in all women and very common in women under 30. I've read here that's the reason they are not offered to women under 30 or 25 in some countries. I have a feeling that might happen here shortly. I read recently that the Government is considering raising the screening age to 21 and many doctors say 24 or 25 is closer to the mark.
Almost all women will have an abnormal pap with annual testing - it's even common with 5 yearly screening. I wasn't surprised to read that...several of my friends and members of my family had abnormal paps in their 20's and an American colleague who has the works every year has had two abnormal pap smears, LEEP and numerous pelvic ultrasounds and other gynaecological diagnostic tests. She always seems to be having tests and scans and she's a perfectly healthy woman.
When you look at how rare this cancer is, most of this treatment must be unnecessary. I had no idea just how much is actually excessive...it really is quite disturbing.
I've always been haphazard with smears and have intended for years to look into the need for them. This site has made that job a lot easier.
I've been following this thread for a few weeks, it really is an excellent reference source for women (and men) and unique in that it amounts to a critical review of women's health.
Very welcome indeed...

Louisa M

Elizabeth said...

Hi Matthew,
Nice to have another male contributor!
I think sexual predators were a bigger problem in the days before female doctors were plentiful. I know at my local Clinic we have one male Dr and 9 female.
There really is no need for any woman to see a male Dr for anything. I think the problem may arise when women are referred to gyn's with abnormal pap smears. We don't have all that many female gyn's yet, I think 30 or 40% are female, but that number is rising. It means a wait or seeing a male Dr and some women are concerned about waiting after an abnormal smear. Of course, most abnormal smears are nothing to worry about.
On the other query...
We recently had a complete airing of the subject of abnormal pap smears in young women and the information was enlightening.

I've attached a summary from the BMJ, although it might not open for you...you need a subscription to access most of the articles, but an extract may appear, if you're lucky.

Anyway, it basically says, "cervical cancer is rare in women under 25. In 2006 there were 56 cases in England - 2.4% of all cases. However, 1 in 3 women screened under the age of 25 would have an abnormal smear, as opposed to 1 in 14 for all women screened."

Given cervical cancer is uncommon almost all abnormal smears are for lesions that would regress over time or are the result of a false positive reading of the sample. Almost all treatment amounts to over-treatment.

One article I read recently said the continued testing of young women in Australia and some other countries provided a lucrative sideline for gynaecologists. Of course, the psychological and physical damage to these young women is terrible. Many of these young women are left traumatized and carry the scars, mental and physical, for the rest of their lives. Cervical biopsies, LEEP and cone biopsies are invasive and highly unpleasant procedures - the whole experience is often described as terrifying, a nightmare, an ordeal etc.
I cannot understand why this is permitted to go on in so many countries.
Many of these young women become advocates of the system because they falsely believe the treatment saved them, in fact, they are casualties of the system.
Every Dr working in that area would be fully aware of the damage they're doing...all totally unnecessary.

Elizabeth said...

http://www.bmj.com/cgi/content
/full/338/jun26_1/b2583?
maxtoshow=&HITS=10&hits=10
&RESULTFORMAT=&fulltext=%22
cervical+screening%22&
searchid=1&FIRSTINDEX=10&sortspec=date
&resourcetype=HWCIT

Sorry, here is the link....

Joel Sherman said...

I agree with most of Louisa M's post except for this statement:

Any male Dr putting pressure on a woman to have smears or breast checks should be reported.

Don't assume you know what his motivations are. He may be following standard guidelines. But he should be willing to answer your questions if you ask why it needs to be done. If he can't give a satisfactory answer go elsewhere and make a complaint if you want. Only a few situations are self evident, like doing routine exams on 15 year olds, and even that was once accepted as standard, especially if the girl was sexually active. Routine breast exams have only become questionable in recent years.
But you should equally consider reporting a woman doctor (and once again, they follow the same guidelines as men) who pushes too hard to do exams you don't want.

Anonymous said...

I probably should have been a bit clearer - any Dr putting excessive or unreasonable pressure on a woman.
It might be one thing to recommend, it's certainly another to become aggressive or intimidatory. Also, most genuine doctors may recommend, but if the woman is reluctant, he should give her the option of seeing a female Dr. Doctors who ambush women or use excessive pressure or other tactics should be reported.
Doctors should be sensitive to the fact this is a very invasive exam. Male doctors should accept that many women don't feel comfortable with a male Dr for that sort of exam. If they are genuinely concerned about screening they'd have no issue referring the woman. The payments system has caused some doctors to feel they have the right to use excessive pressure and even coercion. They need to be reported...the payments system does not permit them to step over the line.
No woman needs to have a pap smear from a male Dr. It should be her idea and with the GP of her choice.
Louisa M

Anonymous said...

I don't feel safe seeing doctors any more...either sex.
Once you could see a Dr without this nonsense dominating the consult.
To hear that 1 in 14 smears are abnormal and 1 in 3 for young women when only small numbers of women would get this cancer is really upsetting.
What is going on?
How can doctors justify doing this to women?
At best, it should only be a recommendation for very high risk women.
How dare anyone say that treating all these women doesn't matter, if you find a couple with cancer?
Isn't the motto of the medical profession to "do no harm"?
And to top it off, most of us know nothing about this...we're made to feel like crazy people if we don't want testing.
This makes me very angry.
The last doctor to insult me was so rude my face was red and stinging for an hour. I feel like going back and telling him straight....how dishonest and self-interested...it really makes doctors our enemies.

Joel Sherman said...

A disagreement I still have with you Louisa M may not be valid in countries outside the US where patients have perhaps less choice of which physicians they see. And even in the US, clinic patients will often see a doctor they did not choose. But most patients in the US have a pretty free choice of whom they see. Any woman who does not feel comfortable seeing a male physician doesn't have to see one and shouldn't. A doctor has the right to assume that if a patient sees you, they are comfortable with you (though maybe less so on the first exam). Both the physician and patient are put in untenable positions if you are uncomfortable receiving total care from them in areas of their competency. Some doctors will routinely offer to let nurses do the more intimate exams when that option is available. If it's not available, you should be seeing a woman physician in the first place or at least being upfront with your preferences from the start. Much of the rest of this blog is concerned with issues like this. A significant percentage of women have your concerns, especially young women.

Anonymous said...

Hope I'm not posting something already covered...
I'm making my way through this terrific site.
I found an article that says 95% of colposcopies are for false positives or minor lesions that don't need medical treatment.
It says women can tailor screening now that vaccinations have reduced the risk of this cancer. A bit dishonest...it seems the risk was never that high anyway.
I suppose you have to cover your tracks.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2746633/
Jay

Anonymous said...

http://www.earthtimes.org/articles/show/24977.html

http://www.salon.com/mwt/broadsheet/2007/01/29/sweden/index.html

According to these articles, clinics in Sweden do not allow for women to choose the gender of their gynecologist.

http://www.anglofille.com/2009/09/10/male-gynos/#comments

In this above link, the author explains another angle on the so-called discrimination of male gynos by female patients.

On one final note, I have a question. Has anyone on here ever heard of a male gynecologist or GP changing professions or refusing to perform "well woman exams" because cross gender exams have damaged relationships and intimacy between couples?

I apologise for going off topic again, but this issue I feel in it's own way is tied into the whole business of annual screening.

Thanks,
Matthew

Violet to Blue said...

Anonymous said...

'http://www.earthtimes.org/articles/show/24977.html

http://www.salon.com/mwt/broadsheet/2007/01/29/sweden/index.html

According to these articles, clinics in Sweden do not allow for women to choose the gender of their gynecologist.

http://www.anglofille.com/2009/09/10/male-gynos/#comments'

These are all about the right of patients to choose the 'gender' of their healthcare provider, which is undoubtedly important but is a bit of side-ways-move from discussion which has so far been about informed consent to cervical screening etc

'On one final note, I have a question. Has anyone on here ever heard of a male gynecologist or GP changing professions or refusing to perform "well woman exams" because cross gender exams have damaged relationships and intimacy between couples?'

No. But obviously I am not the last word on the subject....anyone..?

I apologise for going off topic again, but this issue I feel in it's own way is tied into the whole business of annual screening.

In what way is it tied to annual screening?

rgds
Violet

Elizabeth said...

Certainly annual exams expose the woman to more risks - health, modesty, dignity etc...
I'm sure the excess we see in the States is largely due to women being convinced they need "annual" gyn exams.
I know with guidelines being revised down in that country many gynaecologists are fearful they won't see women annually. When these exams aren't done in other countries, it makes their scare-mongering a bit hollow.

I'm convinced these exams are responsible for all the extra diagnostic tests, biopsies and for the very high number of hysterectomies. (1 in 3 women!!)
I was initially hopeful that women could avoid some of the excess when the guidelines were reduced, but I've read a few pieces over the last few weeks that suggests most/many doctors won't be following these reduced guidelines. Of course, if women rejected the idea they needed routine annual gyn exams, they'd be free to adopt the reduced screening or make their own decision. We also know that women on the Pill have no real say in these exams and what they include...most US doctors just refuse the woman contraception, if she refuses any part of the exam. I regard these exams are totally unnecessary in a well woman and screening should be an informed choice.

I have read various articles over the years about couples having issues with intimacy following these exams with male doctors. I think every woman (and man for that matter) should have a choice when it comes to intimate exams.

I think that's an issue that needs to be discussed by couples, but ultimately, it's a matter for the patient. I choose to see female doctors, but I have no right to force my preference on other people.

I've never heard of a gyn refusing to do well-woman exams - business is business, money is money. I think any man going into gyn would naturally be comfortable doing the lot...it's his job.
However, in countries where the "well-woman" exam is not recommended, it might be a bit different. In the UK and Australia, you don't see a gynaecologist for your normal healthcare, you are referred to a gyn if you're pregnant or have a problem. American women seem to have gyn's as their primary physician and I think that also explains some of the excess and focus on reproductive organs.

The US well-woman exams were launched here and attracted a small following - women who thought they were being very responsible with their health. The service/exams suffered some bad publicity though and a few local doctors criticized the service as excessive and possibly harmful - I know the Clinic close to my home has been closed down.
I recall some of the fuss involved a woman having a healthy ovary removed after the Dr "thought" she felt something...that's the very reason pelvic exams are NOT a recommended screening tool for ovarian cancer.

Of course, if you asked for a referral to a gyn for a thorough check-up, I'm sure you'd get it, but hopefully, your GP might try to convince you it's unnecessary and possibly harmful.

I'm sure some gyn's would love these exams to take-off, it's an easy and lucrative source of income, but I doubt our system would cope...most gyn's are flat-out anyway looking after women with health problems.

A woman rejecting a male Dr is technically discriminating BUT, the Courts have held this is an exception to the discrimination laws, due to the intimacy of the procedures and the vulnerability of the patient.
These cases were about female patients BUT, the Courts did not focus on a history of male Dr's assaulting patients therefore, I see no reason why these cases wouldn't be a precedent for a male patient asking for same gender care.
So, we can legally advertise for female and male attendants for changing rooms, airport security, doctors, nurses etc...
To be continued...

Elizabeth said...

I read a post on the Ob-Gyn.com site, a US site.
I hate the site and keep away from it...the paternalistic and scare mongering comments really make me angry. One male Dr was complaining one of his patients asked him to recommend a female gyn for her daughters. A discussion about discrimination followed - I felt very uncomfortable reading the comments. I think any male or female Dr who becomes angry, insulting & defensive because a patient CHOOSES same gender care is out of line. We're all entitled to make our own healthcare decisions and how a Dr might feel about that is irrelevant. I'm sure they demand THEIR wishes be respected and accepted.
Intimate care is difficult for many people and anything that makes exams easier is the right way. We also have no idea what is in each person's background...many people are victims of past sexual assault. I read about a man who sees a female urologist after childhood sexual assualts by priests. (when he was a boarder at school) Sadly, he has a serious problem that requires the care of a urologist - he ignored the condition for many years before being helped by a men's health group to find a female urologist.
Personally, I believe we all should find a Dr we feel comfortable with and make our own informed decisions about preventative healthcare and even get second opinions about other healthcare. Staying in control is the key.
Thanks for your comments and links.

Joel Sherman said...

This reference was given 5 days ago by Anon. I believe it is a very good discussion of the appropriate age to start cervical screening. I can only fault it for not factoring in an individual's personal risk. It doesn't try to individualize risk for low and high risk woman, i.e. between chaste or monogamous women versus women who have had many partners.

Anonymous said...

Most women are ignorant on this topic. We've never been permitted to play an active role in testing. As a very young woman, maybe 16, I was sitting in a surgery waiting to see the family Dr when he strode into the waiting room and called the name of a woman seeing another Dr at the surgery. He said loudly and almost angrily, "You're very overdue for a pap smear, you must have it today or this surgery can't help you with any other problem". The woman started to cry, slowly rose and left the surgery with not a word. That scene has haunted me for years. I was instantly fearful of pap smears and the power they gave doctors over us. I couldn't believe the way the Dr spoke to this woman in front of three other patients.
I saw a movie a few years back about the Holocaust and the Gestapo get on a train and verbally interrogated a woman suspected of being a member of the underground. It reminded of the day in that surgery. Yet most women would not sympathize with that woman, she'd be regarded poorly, we have all been so programmed, any treatment of women is fine if it ends up getting them tested. Other woman feel they have to get tested, so why shouldn't she? Doctors have turned us on each other like a pack of wolves.
I've never responded to my "invitation"...silly to call it that, it's anything but an invitation. They've finally lost track of me after three moves over 5 years for work opportunities. I lie to doctors and I try to see only one Dr in an emergency who isn't a forceful person. I wouldn't be brave enough to ask a Dr for contraception though, that would be used to put me in the firing line.

Cancer screening shouldn't be like this, everyone must know that but I think the power that was given to doctors has turned it into something oppressive and frightening. It's not cancer screening.
I knew there was much more to the story and thanks to this site I have more of the story. To think all of this goes on for something uncommon and puts large numbers of women through treatment needlessly is criminal.
Hopefully, this regime of tyranny and dishonesty will shortly be stopped. I feel stronger and happier after reading this site for the last three hours.
Thanks very much for this site Dr.
The most valuable site I have ever stumbled across.
Afraid

Anonymous said...

Joel Sherman wrote:
"Most gynecologists will do 10-20 pelvic exams a day in the office. If they ever had any prurient interest in doing them, they lose it very fast." You're very naive Dr. Sherman, or you simply prefer to push the standard party-line fiction. Studies show that around 12% of gyn's engage in sexual misconduct. That's quite a few doctors not losing their prurient interest!

You need to get into the Google news archives and search for gynecologist+misconduct or gynecologist+sex to get some idea of what goes on.

cw

Joel Sherman said...

The best study I know of on the subject of physician sexual contact with patients is this from Vanderbilt Univerity:

Swiggart et al, Sexual Boundaries and Physicians. Sexual Addiction & Compulsivity 9:139-148 2002.

I don't think it's available for free online. Most complaints are filed against GP's, Ob-gyns, and psychiatrists. 12% of practitioners anonymously admitted sexual contact with patients. For psychiatry, near half of the abusers were female psychiatrists. Most of these contacts were consensual in the narrow sense that they were done with the agreement of both parties. That doesn't mean that they were proper. The acts are criminal in some states and against medical licensing provisions in all.
Where I have practiced for over 30 years, there has never been a public complaint against the 20-30 Ob-gyns in the area though there have been several against GP's.
Bear in mind that complaints are not the same as conviction. Gynecologists are clearly at greatest risk of having their demeanor and actions misinterpreted, though obviously many complaints are valid.

However this thread and this blog are not about the criminal conduct of physicians. No one denies it exists. If anyone wants to discuss it further post on the privacy violation thread. I think this thread on screening is too valuable to too many women to allow it to be sidetracked to unrelated issues.

Bella said...

Afraid called this "The most valuable site I have ever stumbled across." I agree. It's the first time I've ever felt like blogs and the kind of open dialogue they make possible might actually change the world.

Anonymous said...

This may be too personal Dr and I apologize if that is the case.
May I ask...if your wife decided not to have cancer screening and preventative checks after completing a Uni course that covered the clinical value of these checks and the risks they carried and she found herself unable to get birth control as a result...what action would you take?
I find myself in that position and even though the barrier to birth control is unjustifiable medically, ethically or legally, no one seems to be doing much about it. I know many women are upset about it and some have posted to your forum. No one in medicine seems to care though...but their wives and girlfriends must be affected or do doctors just write out scripts for their wives?
I think it's a poor reflection of our society when really invasive exams and tests that should never be anything more than optional are forced on women who just want birth control.
I've written to medical officials and usually get no response, one admonished me for thinking of skipping these exams. It seems totally accepted that women can be forced to have optional exams and have no real choice. There is also an acceptance that some women will be harmed by screening...but that's fine, if it helps someone else. We see women attacked who get breast cancer and who decided not to have screening, but no one has much to say about the women harmed by screening/biopsies/surgery/treatments.
I feel quite depressed about the situation and feel condoms will be a way of life until I hit menopause.
Thank you for your contribution.
India

Anonymous said...

Bella, I agree...after decades of silence we're finally discussing the value of these tests, the risks and our right to choose.
I didn't think it would ever happen. I have been called many names over the years and was eventually silenced as well.
Almost all women spout the party line, feel angry about critical discussion and many think the test saved their life.
Most of the women I know who had life-saving treatment were in their 20's at the time...all along it probably means they were over-treated, not saved at all.
Because this test sends huge numbers for follow-up, there is a perception that you'll get this cancer with no screening. If I've read the articles correctly, with no screening, you have a 99% chance of never being bothered by this cancer or by unnecessary treatment and you avoid an embarrassing test every few years.
I can live with a 0.65% risk of cancer and my risk would be less than that probably. With screening, you still carry a risk of 0.33%...(the false negative women) So, 99.35% of women don't benefit from smears at all (incl the false negative women) Yet annual screening sends 95% of women for follow-up and two yearly 77% - that is astonishing, how on earth can that be justified? If women had those figures, many women would choose not to have this test. In all these years though I've never seen the information conveyed that clearly, it's always framed to impress. (and deceive)

I took those stats from the excellent article by the pathologist, Richard DeMay. There are some incredible articles in this blog...what a shame they aren't featured in newspapers and that most women will never see them. Why is it that these really important articles never get into the mainstream media so that doctors are the only ones who see them?
Ruth

Joel Sherman said...

India, I don't think I can satisfactorily answer your question. The answer would be different depending on what country you live in. Your best choice in the US is to go to Planned Parenthood.
For my wife personally the situation has never arisen, but if needed I would simply write a prescription for my wife. That won't help you.

Joel Sherman said...

cw has made another post here which I will move to the personal privacy violations thread.

Anonymous said...

I see things changing simply because more women have the facts and are better able to defend themselves against doctors.
I also see women more prepared to question, not just giving an emotive response. "Was I actually over-treated rather than saved?" "Are those stats correct?"...

Personally I think many GP's are ignorant of the facts as well. When they are forced to stop and think about it, they know what's going on is very unfair to women.
My GP listened to me...she said she HAS to recommend the test but will respect my choice. If I hadn't raised the subject with her, the test would have been done...presented as just part of my healthcare and not an extra test that needs my informed consent.
Dr's are used to doing that, so we must not permit that to happen or we're contributing to the continuation of a very unfair system.
Vote One for Fairness!

Anonymous said...

Following on from Bella's comment, I've noticed in the UK more doctors batting for our side.
http://www.independent.co.uk/opinion/letters/letters-iraq-debate-433697.html

Dr John Nottingham has featured a few times in the papers correcting people who "talk up" smear tests.
We're seeing a bit more of this in the UK, but sadly the fight continues at the grass roots level with doctors fiercely pushing to reach their screening targets.
We need to do away with target payments if we're serious about informed consent.
Prof Michael Baum is the only Dr I've ever heard say that it's perfectly responsible for women to decline smears. (he's British as well)
After some research came out a few years ago showing the negligible chance you have of being saved by this test, a female reporter said she wouldn't be having smears any more...while the risk of a false positive was so very many times higher than a diagnosis of cancer. The Dr supported her decision and encouraged more women to make that decision, after looking at the research. I thought that was amazing.
Scroll down the linked page until you get to, "Tell women the truth about screening test".
Beth

Anonymous said...

I get hassled by post and phone and at every visit to the surgery. I get lots of pressure and my Dr tries to scare me. I'm asked to sign a form saying my Dr takes no blame if I get cancer, because I won't have smears.
Now I hear this cancer is really rare...not really surprising, I've never known anyone who actually got this cancer, but lots seem to have pre-cancer. (which I see now almost never turns into cancer)

My husband got no letters, no phone calls, no pressure and didn't have to sign a form. Now I see that prostate cancer is a very common cancer.
I don't get it?

If a woman gets cancer and a test is available, everyone looks at blame - is the woman to blame, is the Dr to blame? Instead of accepting that some people get cancer and we all have the option of refusing screening. We don't DESERVE cancer because we don't want screening. I think the exaggerations have led to this climate of blame and almost compulsory testing. The test was supposed to be perfect and prevented cancer 100% and now when it happens, everyone can't understand it. It was never a perfect test though.

Why do we see such different attitudes toward screening for cervical and prostate cancer?

Shouldn't the pressure be reserved for the cancer that kills the most people...they say bringing down the death toll is the aim? That is prostate cancer, not cervical. Yet men don't seem to get much pressure at all, my husband got no pressure at all from his Dr.
LM

Anonymous said...

Those forms amount to coercion as well...if you don't sign the form, you're taken off the patient list.
I think we should report doctors who use coercion to force smears. This happens in the UK even though the GMC said doctors must get informed consent from us.
How does the pressure, payments and waiver forms respect our right to choose?

Elizabeth said...

LM, I think I can help with your Q's.
Cervical cancer is a political program. Huge sums of taxpayers money is spent on trying to reduce deaths from a rare cancer and that means getting at least 80% of women to screen.
Informed consent gets in the way, when you MUST screen 80% of women to justify the expenditure.
That's why informed consent was shoved aside and lots of unethical and coercive tactics became acceptable to doctors. The scare campaigns helped as well.
Coverage was the sole aim.

Dr's were a bit slap dash with screening, so the Govt decided to pay them to do their dirty work. A financial incentives scheme was established where doctors were paid per smear and a bonus when they screened 50% of their patients and even more money when they screened 80%. A bonus also applied for screening under-screened and un-screened women.
Women instantly became targets and the really unethical conduct took off...

Dr's are not paid to reach targets for prostate cancer screening and the govt is probably unlikely to arrange a scheme. Not as many men need to be screened to reduce the death rate from a common cancer. Only rare cancers require large numbers to screen to make a difference to the death rate. That's why rare cancer are usually unsuitable mass screening tests.

I would have reported your Dr. I think the General Medical Council must take action now, when they receive those sorts of complaints.
Otherwise, all their talk of respecting informed consent is nothing more than talk. These bodies don't like to be seen in that light.
I strongly urge all women treated in this way to report the Dr. It's the only way forward...

The pressure women face was raised in Parliament fairly recently and the Minister said he'd be watchful of unethical conduct that might be motivated by the payments scheme. The politicians deny it causes poor conduct. Politicians also know that if 80% of women don't screen, the small death rate won't fall and people will be screaming about the millions of pounds spent on screening for no benefit at all. Too many questions would be asked, and they'd prefer not to answer those questions. Politicians therefore are unlikely to ever take action or cancel the payments scheme, it's not in their political interests and that IMO, comes before our health.

Anonymous said...

http://www.health.gov.au/internet/main/publishing.nsf/Content/health-archive-mediarel-1998-mw12598.htm

This is fairly old, but the same statements are made today.
The things that outrage me...
No mention at all of false positives.
The statement that 120,000 pre-cancerous lesions are detected and managed ...which gives the impression that the treatment prevented 120,000 cases of cancer.
That is a bold lie...they know most of these changes would NOT go on to cancer. It is deliberately misleading to scare women.
They say 1000 new cases of cancer are prevented...nothing to back that up though.
They make the grand concession that the pap smear has it's limitations...but don't tell us what those limitations are...isn't it reasonable to expect that women may want to know those limitations?
The whole wording implies unscreened women are making "excuses" and we have no choice.
Screening is the only rational choice.
I don't understand how our Government gets away with lying to us so blatantly. Surely doctors reading that would feel uneasy...but they get paid handsomely for treating us like targets so it's in their interests for all women to screen ...more money!
It really shakes your faith in the system.

Anonymous said...

The word "brainwashing" is used here and its true.
I was reading a forum a few weeks ago and one of the posts stayed in my mind. A woman said her cervix was badly damaged by treatment when she was 21.
Treatment at 21 would be over-treatment, screening is not even recommended for 21 year old women here...
At 41 after having a baby she gets another abnormal smear and is relieved the biopsy is negative.
I've read women shouldn't have smears when they're pregnant or after giving birth as the results are usually abnormal because of hormones, inflammation and trauma.
Anyway, she concludes by saying all women should have yearly paps, they are the most important thing in the world.
We have a woman put through two procedures, both negative results, so we can assume they were false positives, left with damage and she still praises the pap smear and wholly endorses it's importance.
I find that quite scary...
We are so imprinted with propaganda that we see bad things as good. We can turn the pap into something important no matter how bad the outcome.
I found that really disturbing.
Eve

Anonymous said...

Some doctors in NZ test teenage girls. They end up being put off for life and with problems. Some are left distressed, others afraid, some have serious damage to the cervix.
Yet these doctors are allowed to continue.
Some say it encourages screening behaviour. Harm women to encourage them to screen again!
My niece was referred after an early smear and is part of the walking wounded. The mere mention of smears and she goes pale. Did her experience encourage screening behaviour? Definitely not.
We need to take some action to stop doctors testing and harming our young women.
Testing a 15 year old girl is pure insanity.
Janet
http://www.nzma.org.nz/journal/118-1211/1350/

Joel Sherman said...

Here's a blog I just came across with a thread on unnecessary Pap smears. It dates back to 2004. It was precipitated by a JAMA article about doing Pap smears in ladies without a cervix.
There are many comments.

Anonymous said...

For the first time we're hearing the negatives of this testing and everything is falling in place...why our doctors pressure us? Why so many women get abnormal paps and get referred to the colposcopy clinic?
For the first time I feel calm about this cancer and angry about the wasted worry and stress about something that kills few women.
This helps a lot.
When my Dr said that young women are most at risk of this cancer, I politely disagreed with her and produced a chart I copied from this blog. She was stunned.
I caught her out and doctors don't expect us to do that.
This information will help all women. Accepting what we've been told has disadvatnaged us in the past; I see that changing.
SC (Sydney)

Violet to Blue said...

"I politely disagreed with her and produced a chart I copied from this blog. She was stunned."

SC (Sydney)

Can I just say...nicely done ;-)

Anonymous said...

I just read an interesting article on the harm caused by false positives.
It mentions two women actually committed suicide after getting false positive mammograms.
It mentions 1% of women actually get breast cancer, that seemed low to me, I thought it was a common cancer. If it's only 1% for breast cancer, it must be 0.01% for cervical cancer!
It doesn't really mention the obvious though...women must be told the truth and be permitted to make their own choices with screening. The risk of a false positive is very high with cervical screening and high with breast cancer screening. Many doctors seem to see that as the lesser of two evils, but if they pushed a woman into screening and she suicides after a false positive, how would they feel? Given most women don't consent, let alone give informed consent, the Dr presumably should be held responsible for negative outcomes, they have accepted the risk after all, not the patient.
These tests can have serious consequences and it's arrogant to bypass a person's right to candid information and a right to choose.

http://www.hospitalmanagement.net/
features/feature1760/

Beth

Anonymous said...

SC, I wonder whether some GP's even realize they have it wrong. I get the impression some GP's think abnormal paps mean the patient had a real problem and likely to get cancer. (if left untreated)
I think the commonness of abnormal paps have fooled some doctors as well.
They should know, but I wonder...
My Dr seemed genuinely concerned when she heard our Govt are seriously thinking of scaling back cervical screening. She mentioned the huge number of abnormal paps in the very young and what will happen if women under 25 are excluded from screening? She didn't seem to understand that all these abnormal paps don't indicate cancer, but are picking up something that should be left alone. Do some doctors forgive the damage done to women because they genuinely believe the treatment was life-saving?
Perhaps, they see one case of invasive cancer and lose perspective.
The vast majority of women don't get cancer though and we deserve a fair-go as well.

Joel Sherman said...

Anon, you are correct. Don't assume your doctors know what they're talking about. They may really think an abnormal Pap in a young woman is serious. If you get your Pap smears from a GP, they may know little more than to refer you to a gynecologist. The latter should know what they're talking about, though perhaps some get carried away with doing more procedures and talk it up, not down.
I have a feeling that even though I haven’t done a Pap smear myself in 30 years, I probably know more about the subject now as a result of this blog than most generalists.

Anonymous said...

The dangers of screening by Dr Whitaker
http://www.cancerresearchinformation.com/
examining-the-dangers-of-cancer-
screening/

When I read this sort of article I wonder whether these doctors have any idea the sort of pressure women face to have screening and the coercive tactics used...
As if most of us have a choice.
As if we actually have the information to hand to make an informed decision...take a look at the brochures provided by the screening and medical authorities.
That's all most women get and many get nothing at all.
Beth

Elizabeth said...

I think many doctors fall short or are motivated by other factors. That's why women need to get informed and protect themselves. We need to be proactive...leaders in our healthcare.
I noticed an article that I haven't posted. It's quite old which is a bit depressing. You'll see the linking of routine gyn exams and screening to oral contraceptives has been the subject of discussion for many years in the States. These pre-requisites are still common practice in the US and Canada.
I like this article because it makes a few good points. Nothing has changed since 1993 when the article was written, but Planned Parenthood now have the HOPE program, so that's a positive step. A small step after many years.

One of the arguments against women accessing the Pill over the counter (and presumably unlinking birth control and medical tests and exams) is - forcing women to screen and have gyn exams to get the Pill ensures regular health exams, detecting problems unrelated to the use of the Pill.
The article says, "Underlying this defence is the opinion, usually unstated, that coercion based on the "carrot" of a prescription for oral contraceptives is appropriate. We believe that it is not.
Men face no comparable coercion. Should men be required to obtain an annual prescription for condoms to promote the early detection of testicular and prostate cancer?" (through forced exams)
"There are two additional, unexamined premises to consider. First, the "carrot" policy assumes that it would be worse for a woman's health to miss out on routine care than it would be to miss out on taking oral contraceptives. Second, it assumes that policymakers, rather than women themselves, should make the decision"

We've discussed these premises...most of the annual gyn exam is not even recommended in other countries and pregnancy/childbirth carries considerable risk. We've discussed the importance of informed consent for cervical screening - and women being fully informed, knowing the pros and cons.
The authors conclude these policies are unacceptably paternalistic.
I totally agree...

When you think about it, it really is quite disappointing that women in many countries still deal with this problem.
The linking of birth control with cancer screening and routine gyn exams cannot be justified in any way, yet the practice continues...
It's even more surprising that it happens in countries like the States and Canada.

"Should Oral Contaceptives Be Available Without Prescription" by James Trussell, Felicia Stewart, Malcolm Potts, Felicia Guest & Charlotte Ellertson, American Journal of Public Health, August 1993, Vol 83, No 8, pages 1095-1099

Anonymous said...

http://www.annals.org/content/119/1/95.1.full

It worries me that every year doctors seem to be motivated by things other than our health.
I think it's unethical for drug companies to shout them lavish lunches or provide other rewards and I see the financial incentives as another example of further corrupting our doctors.
Shouldn't doctors be professionally and ethically obliged to tell women they have a financial stake in testing as many women as possible?
Why aren't professional bodies concerned about this?
I had no idea doctors are paid in England and Australia to reach screening targets. I suspect most women are completely unaware of this fact. It must mean the government approves of treating women as targets too...
No wonder there is silence on this subject...it clearly suits our doctors and the government.
LKane

Joel Sherman said...

Here's an article from India talking about misleading or at least onesided promotions of the cervical cancer vaccine Cervarix. Something similar has happened in the US.
It is indeed hard to get a straight story with all the vested interests trying to 'sell' cervical cancer scares.

Anonymous said...

Given we reached saturation point with pap smear propaganda many years ago, I thought by now there would be some acceptance that a certain number of women don't want testing and have every right to take that position. Why would you even need a reason for something like cancer screening? Some people don't believe in looking for trouble. I think mammograms and smears are both unpleasant and require awkward exposure so that stops some women, others are worried about risk.
It always annoys me to see articles where doctors ponder the "unscreened"...why are the unscreened being resistant and how to get to them?
There doesn't seem to be the slightest understanding that women are supposed to have a choice and of course, informed consent is required.
Does any woman really need a reason?
I don't see articles where doctors ponder about men dodging rectal exams or PSA testing.
It seems the net will get tighter in years to come...some countries have started cross matching screening registers with electoral rolls. Of course, we can still tell them to mind their own business, but the arrogance and disrespect is clear.
Has screening become a law for women, like paying taxes?
I know most women don't feel they have a choice.
Cassandra
http://xnet.kp.org/permanentejournal/fall98pj/kpnw.html

Anonymous said...

It definitely has...
In America where it's the norm for women to see a gynecologist annually for gyn checks, it's all just done. If you feel you must have a pelvic exam every year or you need BCP's, well, you're already embarrassed and in position.

Doctors must be worried women might read that gyn exams are unnecessary...and they won't see them yearly. If we hear more about the negatives of screening, more women might skip the annual exam altogether.
I think that partly explains what we see and hear.
Over-screening happens because we're having exams that are of little value and this makes it easy to over-screen.
In countries where these exams are not the norm, any critical talk makes it easier for women to skip them...they weren't having an annual exam anyway.

The "law" in the States is more of the same...like the law of "pelvic exams" and the law of "breast exams" & "mammograms"
All of this means lots of profit and protection from legal liability. A paternalistic profession has no problem with the end result.

In other countries, the "law" was created for other reasons. (mentioned here)
High coverage to bring down the already small death toll. It was never intended that women would actually be allowed to ponder the risks and benefits and make a choice, that might mean only 30% of women screen and the government program fails.
This is more like a public health policy that overrides personal choice. (like quarantining people with suspected bird flu in China)
But this is not a public health issue, it affects a very small number of people.
Money must be a factor too with target payments.

Prostate screening is handled differently, because Dr's treat men differently. There are no targets, big cheques and no official screening program. Men are not targets or the unscreened.
I see discussion about the risks too...and debates about whether it should be an official program at all...the reason they always use is over-detection and over-treatment is a big problem - hello, what about cervical cancer? Same problem and the cancer affects far fewer people. How come they don't give a damn about over-treating women, but need debates about doing the same to men for a very common cancer?

My father has prostate cancer in his family and refused rectal exams. Now the rectal exam has been scrapped for the blood test. My father's Dr said men didn't like the rectal exam and wouldn't have them.
Do doctors honestly think women are happy to have pap smears? Is that why WE don't have a blood test? Because we have babies, does that mean they assume we're happy to be exposed?
Many women feel the same way men feel about rectal exams and their feelings are no less valid because they're female.

Even though it stresses me, I do stand up to doctors...mainly because the testing freaks me out. My closest friend had a very upsetting time after a couple of abnormal paps in her late teens and is still a wreck. I don't understand why we're doing this to women and without their informed consent. No one seems to care.
I can't be part of that...but it means being denied all health care or putting up with the stressful fights.

I think this testing and gyn exams demean my sex and reduce us to pawns...it also harms us emotionally and physically (and in the most private part of our body)
I doubt doctors will be happy until we're all on a conveyor belt and thrown out the other side with a damaged cervix and soul. (and possibly damaged breasts and ovaries as well)
It's like a harmful trawling of the female body in a desperate search for disease.
Thanks Dr for the opportunity to vent. We can't talk negatively about this subject in any other setting.
It's against the "law".
Women who don't have smears are running scared and silent. The profession has isolated us and brainwashed everyone else.
It's nice to find a safe house for a well earned rest.

Anonymous said...

http://blog.newsweek.com/blogs/thehumancondition/archive/2009/11/20/mammograms-pap-smears-re-evaluated-how-other-screening-test-measure-up.aspx

Cassandra,
Using some of the figures included here...
Here is an article where a Dr says men can skip prostate screening if there is no family history. Can you imagine a Dr ever saying that about smears? Yet prostate cancer is REALLY common!!

The other point - in the article they mention a serious problem with prostate screening - "of the men who have biopsies, only 25-30% actually have cancer."

Cervical cancer - what percentage of women having biopsies actually have cancer? It couldn't be more than 1% (if that)...
Men can pass on screening for a common cancer because 70%-75% of men having biopsies don't have cancer, women are ordered and coerced to have smears for a rare cancer and almost everyone who has biopsies DOESN'T have cancer. Even 5 yearly smears send 55% of women for biopsies and no more than 1% would have cancer (at the most!) Annual...95% have biopsies and no more than 1% would have cancer. (and as I read it only 0.65% benefit from smears anyway)
Am I right?
If so, I don't get it...
Can anyone suggest a reason for near panic if a woman says NO to smears and a Dr actually suggesting men pass on a test for a very common cancer when far fewer men end up having useless, damaging and painful biopsies?
Jan

Joel Sherman said...

Ladies, just to be clear:
I'm the one who brought up the analogy to prostate cancer in my article, but the parallel is by no means perfect.
Prostate cancer is very common but many of these 'cancers' are very slow growing and in fact do no harm. There is unfortunately no way to tell the harmless 'cancers' from the aggressive ones so nearly all men with positive biopsies are offered surgery or radiation. The common side effects of these treatments can be severe including incontinence and impotence. Clearly this is too high a price to pay for the substantial percentage of these tumors that turn out to be harmless.
Cervical cancer on the other hand (as opposed to a positive Pap) is nearly always aggressive and life threatening.
I agree that men are treated more respectfully and given informed consent. Surely women deserve equal consideration and choice, but the problem is worse for prostate cancer.

Anonymous said...

Dr, does it make this testing more questionable when you see how few women actually benefit because this cancer is rare? Also, the procedures that follow the very high number of false positives and for lesions that would regress are far from a walk in the park.
Most of the points you made about prostate cancer, apply equally to cervical.
Is your point that most cervical cancer is life threatening and prostate cancer often isn't?
Does that still justify the widespread use of this test when the cancer is rare and the risk of unnecessary treatment high?
Wouldn't offering this test and focusing on high risk women be a better idea than trying to screen every woman, virgins, women in monogamous relationships from the start (for both people)..
At the very least we should be consulted in this...low risk women are especially at risk.

Joel Sherman said...

Anon: Is your point that most cervical cancer is life threatening and prostate cancer often isn't?

My point is that the complications of therapy for prostate cancer, incontinence and impotence, are very severe for a 'cancer' that is frequently not life threatening.

Anonymous said...

We hear that so often...that the treatment for a false positive is minor. It is fine then to treat women in huge numbers.
I had a cone biopsy in 2001. It was the most traumatic experience of my life without doubt. I couldn't get a straight answer from my doctor and was terrified this operation was required for cancer.
I got in to see an oncologist a few weeks after the biopsy. He laughed at me and said I'd never had cancer and probably never would. My biopsy was negative and caused by a false positive. I'd never heard of a false positive.

I was unable to get pregnant because of scar tissue and my doctor said I'd need medical assistance. I don't trust doctors anymore and don't want any more treatment.
I don't feel I was adequately briefed before the test or the cone biopsy. What else aren't they telling me?
If I got pregnant, I might need a suture in my cervix to support the pregnancy and would have a c-section. I risk having a prem baby as well.
We are trying to adopt a baby girl or young girl from China rather than have our own child.
I've heard many times that the treatments for an abnormal pap are minor. The oncologist told me false positives are very common in cervical cancer screening.
I'm afraid I disagree with people who say these procedures are minor and don't impact on women.
It seems sexual dysfunction and incontinence in men is more serious than infertility, cervical stenosis, stress, depression, pregnancy and delivery complications and sexual dysfunction in women.
I haven't had screening in 8 years. I don't know what the truth actually is and don't feel I can trust doctors.
I'll take my chances with cancer.
At least then I know what I'm dealing with.
The oncologist told me it's a very small risk anyway...shame no one else bothered to tell me that at the outset.
Clare

Joel Sherman said...

I agree that cone biopsies are the most serious procedure that is recommended for abnormal Pap smears (when outright cancer is not present). A relative of mine recently had a positive Pap smear and underwent colposcopy. I told her immediately that the biggest problem is cone biopsies. I've seen comments that these biopsies are done with narrower slices recently and that cervical incompetence is a much less common complication. Still and all, any women who are asked to undergo one should be forewarned. You need to make sure that the problem is real, i.e. the risk of cancer is significant. Maybe a second opinion would be warranted.
I'm not a believer in debating who has it worse, men or women, but I'd guess that impotence and incontinence are much more common after prostate interventions than cervical incompetence is for cervical interventions. I haven't seen any data though it probably is available.

Joel Sherman said...

THIS THREAD IS NOW FULL. PLEASE CONTINUE ON PART 4.

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