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Friday, September 2, 2011

Women's Privacy Concerns Part 7

Part 6 is full.  Please continue here.
I'll repost the last 2 comments for continuity.

113 comments:

Joel Sherman MD said...

Here's an article from KevinMD about over screening for breast cancer. Interestingly it was written by an Ob-Gyn, Margaret Polaneczky, who was previously criticized in these threads for shutting down comments on her blog outlining the case against routine cervical cancer screening. Maybe she's learned a thing or two.

Joel Sherman MD said...

Elizabeth (Aust) said...

Dr Sherman, I don't think it was our comments that got to her, we could be shut down and silenced with Dr Polaneczky having the last word.
It was your input that may have surprised her and made her look at her actions and words. When another doctor challenges you, IMO, it has a greater impact. "AM I being unprofessional?"...

I firmly believe change is now happening in the UK and the States because doctors are speaking out in greater numbers - it's then safer to challenge unethical and unfair conduct, correct misstatements and fill in omissions - and that has a huge impact. Pro-screeners can no longer feel safe to do as they've done for decades - they're being watched and challenged...and that's why not much is happening in Australia...virtually no critical discussion where women can see it and no high profile advocates for informed consent for women. I'm sure doctors are fearful to stick their heads above the parapet. Papscreen and the Cancer Council feel so "safe" they use "angles" that were knocked down by UK advocates over a decade ago - like comparing our rates of cervical cancer with Africa and putting the difference down to our screening program. Dr Raffle took on that statement years ago - totally discredited the speaker.

We have Dr Gerard Wain, who'll occasionally state that we're wasting our time screening women under 25 and 2 yearly testing is too often, but Papscreen always have the final word. I wouldn't call Dr Wain an advocate for informed consent for women - I haven't seen any articles in the paper written by him - no public challenges. He also pretty much stands alone.
We do have academics who publish in medical journals, but few women see them...so it's a safe way of challenging an unethical system.

Still it gives us hope...the NCI have made some very frank comments about the NHS and their breast screening brochures. I can only hope they take a second look at ours, they're worse than the UK version and no one here seems to care or certainly isn't prepared to take on the screening industry.
The NCI criticized our brochures a few years back, shortly before they released their own informative summary, "The risks and benefits of mammograms" which most women have not, and will not see, if Breast Screen has anything to do with it...they're under pressure to hit the 70% target for women 50 to 69.
September 2, 2011 9:55 PM

Reposted from Part 6

Joel Sherman MD said...

Here's a snippet from a country we never talk about, but it's kind of illustrative.
In Jamaica last year, 567 men were screened for prostate cancer whereas nearly 11000 women were screened for cervical and breast cancer.
The article states that men avoid screening, but doesn't say why. Interestingly, the discussant is a female urologist.
It's probably another example of women being over screened while screening for men is not on anyone's agenda.

Joel Sherman MD said...

At home self administered tests to detect cervical cancer seem to be widely available in the UK.
Does anyone know their status in the U.S.? Haven't heard anything about them here.

Anonymous said...

Never heard of them being available in the US. I have seen on tv and read that doctors need to do paps so they can "hit the right spot." I don't see at home tests coming to the US anytime soon. Personally, I have never tested; the risks versus benefits seems like too much of a price to pay.

Anonymous said...

Regarding the article about Jamaica. This sentence stands out:"men often shied away from screening while women were more sensitised in dealing with health issues. "Methods used to capture women do not work for men," she argued." I wonder if they mean holding the pill hostage.
I don't think it's just an issue in Jamaica. I know here in Australia men don't want to have a prostate exam either.
Nic

Violet to Blue said...

RE: self-administered HPV tests in the UK.

I think in the UK, whilst a national HPV vaccination programme has been instigated, the link between HPV and cervical cancer still isn't very widely understood by Joe/Joan Public. Certainly I've heard very little about these home tests - either via the media or via general chat with other women (although I stress I'm hardly omniscient, and as this a recently released article this could change if it gains enough media attention). Also as most people's healthcare is via the NHS rather than via private treatment, a HPV test (home or otherwise) will probably only come to national attention when it becomes included as part of the national cervical screening programme.

Such is my English penny's worth anyway, and nice to see this thread still going!
rgds
V

Elizabeth (Aust) said...

My reading suggests that many women could forget pap testing if they were properly informed about the HPV test. One of our senior gynaecologists (Assoc Prof Margaret Davy) produced a pull-out guide for doctors that was included in "Australian Doctor" in 2006 - it clearly stated that not one country in the world had shown a benefit pap testing women under 30 - it also suggested that women could have the HPV test at age 30 and if negative for high risk HPV and in a monogamous relationship, could forget pap testing. These women are only tested endlessly "in case" their risk profile changes. Women are not given this information - they are just tested, which of course, carries risk.

I know the Australian Govt wouldn't want women asking for the more expensive HPV test or more women making informed decisions not to have pap tests when they've invested millions in a screening program for this rare cancer. Of course, most of these women are either no or low risk for cervical cancer and are unknowingly accepting risk with testing. It shows the lack of regard for our health and rights....the individual is sacrificed to feed, protect and justify the the program. Individual women don't matter...they're happy to worry and harm huge numbers to possibly help a very small number.

When you consider only 5% of women are HPV positive at age 40, that's a lot of no/low risk women being exposed to risk with this testing.
If the program concentrated on those women "at risk" (with their informed consent) and advised other women to assess their risk profile every 5 years or even have the HPV blood test every 5 years, they'd avoid worrying and harming vast numbers with this program and are far more likely to help the few that might go on to develop a problem. It seems no one cares about harming and worrying lots of women - as long as they can keep women ignorant and compliant, they'll stay with the program.
It makes me think it's politics and profits that keep the program unchanged - because a lot of money could be saved with reduced testing and far fewer women having excess biopsies and over-treatment - not to mention fewer women left with cervical danage that can mean premature babies, more c-sections, infertility etc

Elizabeth (Aust) said...

"ADVICE ASKED FOR MINORS WANTING TO REFUSE PAP SMEARS/ BREAST EXAMS AND CERVICAL CANCER VACCINE!!

A 17 year old girl whom's father had scheduled a *complete* medical exam with his male doctor last year because he's worried she might contract cancer since her mother died of cancer a couple years ago, asks advice on how to avoid going through this traumatising 'exam' again.

How the exam went down was very upsetting for her and done against her wishes since she told the doctor to not touch her *there* over and over again but he would not listen and told her it wasn't up to her as she was a minor and her father ordered a complete exam.

Her father even ordered a mammogram, but the doctor didn't gave her one as he said she was too young for that but instead would give her a very thorough breast exam.

Now one year later she got a reminder to go back which she definitely not wants to and asked her father if the dr is going to do all that stuff again. Her father replied to not be so silly and she needs to go every year to that doctor untill she's 21. He also wants her to get the cervical vaccine this year.

Her questions:
"Can they make me get the shot?
Can they make me go to a doctor that hurts me and has a creepy helper?
How can I get out of this? I'm sick to my stomach and can't sleep.
Do I have to do whatever they say?
Please write soon I don't have much time."

I told her this is medical rape but as to what the law really says, I'm not sure. I did find this article http://www.enotes.com/everyday-law-encyclopedia/treatment-minors which suggests that since she is a minor already having reached her teenage years she would be the one having the final say in her medical care.

But we also know that in some states they even want to vaccine girls without parental consent, I think this is a delicate issue. What would you advice her to do?

I said give your father first all the info about the real facts so he might change his mind, if not lie about it, say you went without really going, but then there's the issue with those nasty reminders....or keep saying No and threathen to get a lawyer?

What can she do at her age? She lives in Pennsylvania btw"

Dr Sherman, I was concerned to read this post over at Blogcritics.
Surely a teenager has the right to refuse routine medical care?
IMO, these exams are unhelpful and harmful, yet some American parents believe it's essential to get their daughters "used" to these exams - so they continue to have them into the future, accepting they're essential for good health. Some of your doctors are still pushing that line as well.
I suggested she refuse to undress - any doctor forcibly removing clothing in a routine consult setting would surely be on very shaky ground. Also, perhaps she could contact Dr Carolyn Westhoff who recently published an article questioning the value of these exams - she might be prepared to speak to the father and/or the doctor.
I think Hex had an issue like this with his niece - nurses used force to try and remove her clothing and from memory, they were found to have assaulted the patient.

Joel Sherman MD said...

Elizabeth, I'm not a lawyer and can't give valid legal advice. But she can refuse any part of the exam no matter what her father wants. The doctor's responsibility is to the patient, not to the father; the doctor can't force the exam which would constitute an assault. He shouldn't do exams which aren't indicated no matter what the father wants.
Now I don't know in this case what is indicated. Surely routine annual pelvic exams are not indicated, though ACOG would not agree with that. But I don't know what the mother died of and there may be other special circumstances. The daughter needs to make her position clear with her father who after all she is still dependent on.

Anonymous said...

Elizabeth,

I certainly do feel sorry for this poor girl. It sounds as if her father has let his emotions over her mother's passing cloud his judgement when it comes to health care and medical tests. She may still be a minor, but gosh darn it, she has every right to say what is or isn't done to her body and by whom it is done. For her father and the doctor to put her through that sort of trauma is beyond reprehensible!

It makes me even more grateful for my late mother who was present with me as a teenager when my pediatrician, a female Dr. with an interest in adolescent gynecology, tried to get me to submit to gynecological exams. I remember several occasions of going to the Dr.'s office for a sore throat or upper respiratory bug and being instructed by the nurse to change into the paper clothing before the Dr. came in. I did not do so and my dear mother refused the exam for me as well. She knew it was not necessary, it would be traumatizing to me and had nothing to do with the reason for my visit (sore throat, etc.) It is sad that some medical professionals seem to care more about our female bits than the rest of our bodies, even when there is a non-gynecological reason for the visit to the Dr.'s office. I certainly hope this young lady can get her situation straightened out and not have to endure any more unpleasantness.

--Susanne

Elizabeth (Aust) said...

I agree, Susanne...I hope it works out for her and she's not subjected to more trauma. I fear this is quite a common thing in the States.

I found this on various ACOG sites:
I hesitate to mention ACOG for obvious reasons, I'm not their biggest fan to put it mildly, but listen to this:

"For women younger than 21 years who have never been sexually active, no routine pelvic examination, cervical cytology, or testing for sexually transmitted disease (STD) is needed. If the women have ever been sexually active, however, ACOG recommends cervical cytology be performed 3 years after the onset of sexual activity, and annually thereafter. Routine pelvic examination should be performed only when indicated by the patient's medical history."

and on another of their sites:

"The revised schedule covers the long-standing staples of the well-woman exam. No matter a woman's age, there are standard components of the annual ob-gyn exam, including assessing current health status, nutrition, physical activity, sexual practices, and tobacco, alcohol, and drug use. Across age groups, the standard physical exam also includes height, weight, body mass index (BMI), and blood pressure. Annual breast and abdominal exams begin at age 19, and routine annual pelvic exams begin at age 21."

How does the doctor explain the exam he performed last year including a pelvic and breast exam in light of these recommendations?
I've suggested she show the guidelines to her father and if she ends up at the surgery - take them with her and say she's not consenting to anything outside the guidelines.
If the father does not accept the guidelines, perhaps she could also speak to a school counsellor. Her health and mental/emotional well-being is clearly being threatened...

Elizabeth (Aust) said...

Dr Sherman, I found a paper by the Health Council of the Netherlands, "Population screening for cervical cancer" 24/5/2011
They recommend a move to hrHPV testing as the primary test to identify hrHPV-positive women. These women are then put into the cytology stream (using the same sample) and if no abnormalities are found, are offered a pap test in 6 months time. If abnormalities are found, these women are referred for follow-up colposcopy/biopsy etc

HPV testing will be offered 5 times in total at age 30, 35, 40, 50 & 60. Women who don't respond to an invitation and reminder will be sent a HPV self-test kit.
The HPV test they plan to use is the invasive test, they don't mention the HPV blood test.

A Finnish study used the hrHPV test to triage women - into HPV positive and HPV negative. 5363 women were in the HPV positive group (including some symptomatic women) while 35,000 women were in the conventional screening group. The HPV test was used to identify those women "at risk". They believe more women will be helped with this testing and fewer women will be referred and over-treated.

I was disappointed to see the Finnish study examined in a couple of Australian articles and the pathologists and protectors of the current program naturlly had lots of "concerns" - IMO, about their profits and self-interest. They argue that HPV testing may be more helpful in Finland because they only test women 7 times in total, whereas we have a better screening program. (You must be joking!)
That statement ignores the huge elephant in the room - the massive over-detection and over-treatment caused by our program.
They're also concerned that women found to be HPV-positive will be worried unnecessarily, as most will not develop cervical cancer.
Of course, these women are at least "at risk" - our current program worries and harms huge numbers of healthy HPV-negative women...surely these women have some rights as well and deserve some consideration.

Over and over the arguments are about cost and the wisdom of disturbing a highly successful program - it's like the masses just don't matter...few know about the over-treatment, so they can get away with it.
The pap test is roughly $20 while the HPV test is $70-$100 - when you consider that far fewer women will be referred with HPV testing (and left with health issues after over-treatment) and fewer tests will be required, I doubt the HPV test would be more expensive in the long run. Also, some women might prefer the option and pay for the test or cover the difference in cost between the two tests - some women currently pay for a liquid based pap test.

Some countries consider the majority of women who are HPV negative, while other countries have used these programs to take advantage, maximize profits or further political and other interests. Women have paid a high price with the violation of their rights and bodies and harm to their health and emotional well-being.

http://www.australiandoctor.com.au/news/dc/0c0656dc.asp
http://www.abc.net.au/science/articles/2010/04/28/2884457.htm
http://www.gezondheidsraad.nl/en/publications/population-screening-cervical-cancer

Joel Sherman MD said...

Thanks for all those links Elizabeth. Though I'm not an expert by any means, I have no doubt that HPV is grossly underused here and in most countries. I don't know the reason for it, but clearly its greater use would cut down on over testing and unneeded procedures.

Elizabeth (Aust) said...

Dr Sherman,
Just read that a draft recommendation by the United States Preventive Services Task Force, due for official release next week, will NOT recommend PSA testing in symptom-free men. They say overall it does not save lives and often leads to painful, unnecessary treatments and biopsies that can leave men impotent and incontinent.
http://www.nytimes.com/2011/10/07/health/07prostate.html

Joel Sherman MD said...

Thanks Elizabeth. I'm sure the USPSTF's guidelines are factually correct. On the whole lives are not saved by routine PSA testing. But in an interview one of the members of the committee admitted that of course the test itself is just a blood test (unlike the more invasive Pap smears) and harmless in itself. It is usually done with routine annual blood work and doesn't even require an extra procedure. If you know what it means you can use it to help assess your risk and subsequent follow up routine.
I for one will definitely continue my routine testing because of an at risk family history despite being asymptomatic.

Joel Sherman MD said...

For cervical cancer screenings, which the government panel says can usually stop at 65, over 80% of Medicare claims -- more than 13 million -- were for women who were 65 or older.

This report based on a government study on the over screening of Medicare age population in the US. Lesser results were found for many other cancers including breast cancer.

Joel Sherman MD said...

Yesterday the Annals of Internal Medicine released an article by the USPSTF which has gotten wide publicity. The gist of it is that HPV is no better than liquid based Pap smears for screening for cervical cancer.
That may be, but primary screening was not the major use of the HPV test to my non expert understanding. I believe the major use for an HPV test is that a negative test strongly implies that the woman is at very low risk of cancer for at least 3 years.

Elizabeth (Aust) said...

Call me a cynic, but if they moved to high risk HPV testing as a primary test, the number of women having pap tests would dive dramatically...it would also send over-treatment rates way down.
Only 5% of women are HPV positive at age 40.
You'd only be pap testing those women "at risk" - positive to hr HPV and the others (most women) could have infrequent hrHPV testing or if monogamous or no longer sexually active, forget about testing. (and maybe revisit the subject if their risk profile changes) The Health Council of the Netherlands have recommended a move from their 7 pap test program, 5 yearly from age 30 to high risk HPV testing as the primary test - 5 tests would be offered at 30, 35, 40, 50 and 60. Pap tests ONLY for those who test positive for hrHPV, those "at risk"...

The industry that has been built around the unreliable pap test and the mythical "every woman is at risk from cc" would fall like a house of cards. Would that be welcomed by those who make huge profits from these tests/exams and over-treatment? I doubt it...

I wonder why the Netherlands seem to get these things through fairly quickly, while other countries are still using outdated/excessive and harmful pap testing programs. It seems the powers that profit or derive a political benefit from these programs don't have the same influence in the Netherlands.
Trust the Dutch to put common sense first and they'll save a fortune as well. Not to mention it's a MUCH better result for all women - hrHPV positive and negative...and hopefully, they get results, without the awful burden and cost paid by women not even at risk from this rare cancer.

Joel Sherman MD said...

Here are the latest guidelines from the USPSTF for cervical cancer screening wherein they state that once every three years is sufficient, especially once you have had several negative Paps.
As before you can anticipate many organizations and physicians will still push annual exams so come prepared. I will add this to the links.

Joel Sherman MD said...

We have a new article on our companion blog concerning modesty from a woman's perspective. It can be found here.

Elizabeth (Aust) said...

Dr Sherman,
Prof Baum and others have finally forced some action in the UK...a full review will be conducted into the risks and benefits of breast screening. The action was finally prompted by an open letter sent to Mike Richards, National clinical director for cancer and end of life care in the Department of Health by Dr Susan Bewley.
Wonderful news for English women - nothing in the "News" here. Hopefully, it will find its way down here and someone will feel motivated to make some noise.
http://www.guardian.co.uk/society/2011/oct/26/breast-cancer-screening-review-launched
http://www.bmj.com/content/343/bmj.d6894
http://www.bmj.com/content/343/bmj.d6843

Anonymous said...

Dr. Brawley of the ACS has written an opinion piece on the downsides of prostate screening for CNN. Now if only he would do the same regarding pap tests, which are for a cancer much rarer than prostate cancer.

http://www.cnn.com/2011/11/01/opinion/brawley-prostate-cancer-screening/index.html

Elizabeth (Aust) said...

If only...but this rare cancer is continuing to decline, so the credit goes to screening. I think it "might" be PART of the reason, but the over-detection and over-treatment of healthy women that occurs to try and prevent a rare cancer makes this testing unacceptable IMO, for mass screening, and definitely not without informed consent.

There are much better ways to help this relatively small number of women. It's unfair to only consider their health and harm and worry the more than 99% who can never benefit from screening.
When only 5% of women are HPV positive at age 40, it's insane to pap test everyone every 2-3 years until they're 60 or 70.

It convinces me the countries that have not made changes to better protect the healthy population of women are motivated by the income that flows from over-screening and over-treatment and of course, political factors, it's viewed as better to over-everything, rather than cut back - even if the former harms the masses. I remember reading that 1 billion dollars is made every year in the States from excess cervical biopsies. It's hard to fight a system that generates that sort of money.
Common sense seems to prevail with prostate screening, but is missing in breast and cervical screening. I think the coercive and dishonest "climate" that has always controlled our programs means there is no room or tolerance for facts or informed consent.
We're still largely viewed as fools if we refuse screening - outcasts and idiots. Nice to know more women are joining me though...

The war that's raging in the UK over breast screening received one small paragraph on page 6 or 7 of the paper here...final word went to a pro-screening academic/doctor.
Nothing further has been said...without advocates anything critical dies a natural death very quickly. The screening authorities are firmly in control here and everyone is silent.

Anonymous said...

Interesting article in Australia re the over diagnosis and subsequent treatment for breast cancer.

http://www.theage.com.au/national/breast-cancer-overdiagnosed-20111103-1mxyj.html

Chris

Elizabeth (Aust) said...

Yes, Chris...it was a delight to see some amazing coverage on over-diagnosis in breast screening.
The Minister of Health has made no comment though, so I fear it will be left to disappear...
Breast Screen are meanwhile pushing this Swedish study and suggesting this should make us feel more comfortable with the breast screening program.
Clearly they intend to ignore the criticism and carry on with their efforts to achieve their political goal - 70% of women screened in the target age range, 50 to 69.
The breast cancer lobby is so powerful and political, one brave Assoc Prof is probably no match and I note no one else has come forward to support her. Prof Olver from the Cancer Council surprised me, he agrees women should receive more risk information.
We'll see, but hopefully the article will spur more women to do their reading and ask more questions. Breast Screen and Papscreen are political organizations and we should keep that in mind when we consider their advice.

Joel Sherman MD said...

I must note that in the Journal of American College of Cardiology, Vol. 58, No. 19, 2011 they reported a very significant association between being HPV positive and the presence of atherosclerotic heart disease. In my mind it is another good reason for being tested for HPV. If positive, you should be followed more closely not only for cervical cancer, but for heart disease as well.

Violet to Blue said...

"I must note that in the Journal of American College of Cardiology, Vol. 58, No. 19, 2011 they reported a very significant association between being HPV positive and the presence of atherosclerotic heart disease."

That's a very interesting association, Dr Sherman. Is the article linkable/accessible to the layperson at all? If not I may add it to my site as a relevant note at least.

Joel Sherman MD said...

Sorry Violet, the article is not freely available on the web, but can be accessed at almost any medical library.
Here's another article from the NEJM which summarizes the present views of American medicine about cervical screening recommendations. It is worth a read.

Elizabeth (Aust) said...

Well, our program will remain unchanged for some time to come - the review is only just starting and the report isn't due until mid 2014 and then women must wait for the government to make changes, if that ever happens. In the meanwhile women are being urged to stick with 2 yearly testing from teens - over-screening and that means more over-treatment. Of course, these things are not mentioned to women so many will take their doctor's advice and over-screen to their detriment.

There is no gray area here, the delay is inexcusable and I believe is a deliberate strategy to allow the completion of unauthorized research on young women. The point has been made that this research is only possible because we still screen young women.
I cannot believe we have fallen to this level...

I hope more women and doctors walk away from this harmful program.
They have the audacity to say there will be no delay in the preparation of this review - we're about a decade or more behind the evidence and knowingly harming women. I cannot believe our doctors and others who could stop this are all silent and allowing this to go on and on...

It shows what can happen when we put our trust in the medical profession. I know many doctors are uncomfortable with the program and all of the referrals, but 60% of women are still being over-screened...at this point when the evidence is crystal clear, I would have thought it was more dangerous to recommend this program - surely it amounts to professional misconduct to knowingly expose your patient to risk for no benefit or no additional benefit and to collect an undisclosed payment for doing so? To make matters worse Papscreen has started a new campaign to get more women in for over-screening including young women...it's just sickening.

http://www.medicalobserver.com.au/news/no-delay-on-cervical-screening-review

Anonymous said...

The ping-ponging recommendations on mammograms continue. Here's the latest from CNN. Of course, those touting the start-at-40 guidelines and rejecting the USPSTF ones are the radiologists who likely have a vested interest in this case. It's frustrating to read this.

http://thechart.blogs.cnn.com/2011/11/29/radiologists-say-mammograms-should-start-at-40-not-50/?hpt=hp_bn10

Elizabeth (Aust) said...

A letter appeared in the "Lancet" recently in response to the mounting criticism of breast screening - light on facts as usual, but they state they have no conflict of interest. What? Most of them work for screening authorities or cancer charities. I think that's a conflict of interest.
I think the NCI are preparing their response. These groups must hate that - not having the last misleading or arrogant word and shutting down the discussion.
I've loving all of this and I should add, have waited a long time to see the facts/evidence being released, and for some discussion about informed consent and the unethical tactics used by the screening authorities.

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2811%2961766-2/fulltext

Elizabeth (Aust) said...

The hrHPV self-sample test is being used in the Netherlands. (it's being looked at by the UK, Italy and Germany as well, so I understand)

If you test negative and are no longer sexually active or monogamous, you can forget all testing, you're not at risk from this rare cancer (unless you take a new and infected partner)
If you're positive you know you might be "at risk" from this rare cancer and if you're negative and sexually active with more than one partner or want the reassurance of continued testing, you can simply self-test for hrHPV at infrequent intervals throughout your life. (The Dutch program is 5 times in total - at 30, 35, 40, 50 and 60)

Our doctors tend to block everything to force women into the over-screening program, they're paid to reach pap testing targets. Some of our doctors even mislead women by saying HPV testing won't help them. Of course, HPV primary testing is not being offered here, just serious over-screening with the unreliable pap test.

So the Dutch have lots of options that minimize testing and over-treatment. Here in Australia women are offered an over-screening program - 2 yearly from teens to age 70 - how harmful and archaic! Plus the fairly high risk of a false positive and unnecessary biopsy or over-treatment.

Here is an article on the self-sample test being used by the Dutch, the Delphi Screener.
http://www.sciencedaily.com/releases/2011/10/111020163909.htm
Delphi hrHPV Self-Screener:
http://www.delphi-bioscience.com/Paginas/default.aspx

Joel Sherman MD said...

Here's the abstract of another just published article concerning over screening in the elderly for cancer including breast, cervical and prostate.
The message is always the same. Although guidelines for all these screening tests have been modernized and improved, many providers don't follow them. Eventually they will I'm sure, but until then it behooves every patient to be familiar with them so that you can judge screening recommendations from your doctor independently.

Elizabeth (Aust) said...

Hope everyone had an enjoyable and relaxing break, and Happy New Year!

I've been doing a little research into the plight of poor German women, some of the most over-screened in the world and it appears they'll continue to be into the future. Very few seem to be aware they're risking their health with this excess. Not only are they pap tested annually from teens, they also have annual bimanual pelvic and breast exams and are offered an annual TV ultrasound - talk about being obsessed with one area! They must have huge over-treatment rates and I wonder how many lose healthy ovaries.

It is a huge concern when women are offered things that are not backed by evidence, are harmful, but because they're promoted by doctors as sound preventative healthcare many women follow the advice. That seems like knowingly harming your patients to me. Surely doctors have a higher responsibility and if there is no benefit, but evidence of harm, they're obliged to advise women? But then we're still pap testing young women when there is no evidence of benefit, but lots of evidence of harm - so our doctors are no better.

I've also been looking for research into rates of over-treatment and even though it's an epidemic, very little money and time has gone into this research - it's like everyone is turning a blind eye. I have one case for Australia that's quite old now that gives 77% the lifetime risk of referral here...my GP said the changed guidelines for referring patients isn't really working as most women panic when they get an "abnormal" result and want to be referred...after decades of scare-mongering and misinformation that's hardly surprising, so I suspect our referral rates are still very high and include lots of women under 30. Almost all of this damage is avoidable now, but we choose not to make changes. So much for following guidelines...might as well go straight to day procedure.

Joel Sherman MD said...

I can't imagine how anyone could justify doing routine annual transvaginal ultrasounds.
That makes Pap smear abuse almost appear trivial in comparison.

Elizabeth (Aust) said...

They've proposed doing routine TVU and CA-125 blood testing to screen for ovarian cancer, but thank goodness it's been knocked on the head - studies showed it wasn't helping at all, but women were having surgery after false positives.
Doing an annual TVU and promoting it as healthcare is very concerning. The insidious thing is many women embrace these things - if it's being offered or recommended, it must be beneficial and they pressure other women to have these exams - they're being "proactive with their health". It's hardly surprising these things can become part of our healthcare when they're not evidence based. It says to me we should be very careful introducing anything without randomized controlled trials.

My GP worked in a city practice for a few years and saw a few German tourists. She was amazed these young women were anxious because their uterus and ovaries had not been checked for a year - she told them the routine TVU and pelvic exam were not recommended here and annual pap testing was also unnecessary. They left unconvinced - they've obviously been told these things are vitally important, when nothing could be further from the truth. My GP felt they'd be going straight to the gynaecologist as soon as they got home. She also noted most of these women had already had multiple procedures even though they were in their early 20's - cervical biopsies, LEEP and other assorted investigations. This further convinced these women that they were at risk, when they'd previously had "abnormal" results. No one had obviously told them false positives are very common when you do these exams and tests and the risks with pap testing are even higher for young women.

Elizabeth (Aust) said...

I have a link that may interest some of you. A colleague/friend has just tested for hrHPV in Amsterdam. Her Australian doctor told her HPV primary testing doesn't help women and they still need pap tests - that's misleading.

She was negative for hrHPV and is no longer sexually active and is therefore not at risk from cc, a false negative is unlikely, but women can re-test in 5,7 or 10 years time if they want further reassurance. (depending on your age)
Those positive are offered 5 yearly pap tests (no more than 7, not before age 30 or past 60 - unless there was a problem with previous pap tests or they've had cc) - most women clear the virus at some point and then will be offered infrequent hrHPV testing.

Those negative, but sexually active with more than one partner and who might contract a new hrHPV infection, will be offered the HPV program. By age 40 only 5% of women are HPV positive, so this program is likely to further reduce testing, false positives and over-treatment.

The adoption of this program in Australia would mean a vast reduction in pap testing and over-treatment, but we're light years away from this sort of program. They need another few years to decide whether it's "safe" to move to 3 yearly pap tests from age 25 to 70. Of course, we have no high profile advocates for informed consent so IMO, our program basically operates for the benefit of vested interests.

We don't need to harm vast numbers to help a few and the Dutch program is more likely to catch those 9 cases in 100,000 women - the pap test misses at least 25%-30% of squamous cell carcinoma and at least 50% of adenocarcinoma. So, our program is not about our healthcare, it harms women in vast numbers and a few women probably die as a result of false negative pap tests, when hrHPV primary testing and the option of the Delphi Screeer may have saved them.
http://www.hpvtoday.com/webEng/material/material.php

Elizabeth (Aust) said...

Dr Sherman, I'm curious and wondered if you'd give me your opinion: if a cancer screening program you know is harmful remains in place - do you as a doctor advise your patients to reduce or stop testing, or do you continue to recommend the program?

I know legal liability is a big factor in the States and so hiding behind a program might be the safer option for the doctor, but I wondered whether that would save a doctor from a law suit by a person harmed by the program, surely they'd join the Govt and the doctor.
(especially when women are tested with no informed consent and women are becoming more aware that our program is harmful)

I've been posting on the Mamamia site and an Australian doctor has chastised a woman for being critical of this life-saving test - after I and a few others posted, she claims all doctors can do is follow the program while the research is being done and options examined and eventually, perhaps the program will be changed and other options will become available.

I don't accept this for one moment, while some in this country might like more time to consider HPV primary triage testing and the Delphi Screener, we could minimize harm by immediately extending the testing interval and exclusing women under 25. IMO, every competent doctor in this country would know that our program is excessive and harmful, I've found numerous articles in "Australian Doctor" and the MJA.

In my opinion, if doctors had refused to continue to co-operate with the Govt, had walked away from the program, this program would have been changed long ago - OUR doctors have kept this harmful program in place. The doctor has fled now, you can fob off and discredit some women, but you can't do that to multiple articles from medical journals. I hope our posts make some doctors uncomfortable, perhaps some will then advise their patients properly and spare some of them from excessive testing and potentially damaging over-treatment - others may even be prompted to write to the AMA urging them to make an announcement on behalf of all doctors. Doing something, anything, is better than doing nothing...
http://www.mamamia.com.au/health-wellbeing/the-5-things-you-need-to-cross-off-your-health-checklist/

Elizabeth (Aust) said...

http://www.medicalobserver.com.au/news/no-delay-on-cervical-screening-review

"The review chair, Perth gynaecological oncologist Professor Ian Hammond, said a committee formed last week would hold its first meeting before December and report to government mid-2014.

By then almost a decade will have passed since the 2005 NHMRC recommendation that the screening interval in Australia “be reviewed as soon as possible”.

Frustration over delays was evident as details of the review were revealed at the Preventing Cervical Cancer conference in Melbourne on 11 November.

A federal health department officer was quizzed from the floor on whether the National Cervical Screening Program (NCSP), which has turned 20 years old, would remain unchanged “until 2020”."

How can they possibly say a delay of more than a decade is acceptable, especially when our program was already excessive?

Joel Sherman MD said...

Elizabeth, as a cardiologist I don't do much well patient screening. Nearly all of my patients have disease. I certainly wouldn't push a screening test I thought was harmful, but medicine is often not that clear cut. If there was a controversy about a test, I'd try to explain that and give the patient options, likely with my own personal recommendation.

Doctors in the US are somewhat in a bind. Many women have come to expect yearly exams and Paps and might leave the doctor if they stopped recommending them. Plus of course there is a financial incentive. The path of least resistance is to do the test unless the patient demurs.

Most gynecologists know the facts. My wife has been used to getting annual Paps and exams every year, and was somewhat reluctant to believe me. But on her last visit to a gynecologist she mentioned my blog. Afterwards, for the first time ever, the gynecologist told her that at her age she didn't have to return unless she had a problem.
Don't know if that fully answers your questions. It will take time to change long standing habits of both doctors and patients.

Anonymous said...

Dr Sherman how does your wife feel about that? Does she feel that she's been lied to all these years?
Mary

Joel Sherman MD said...

Mary, my wife certainly doesn't feel she'd been lied to. Indeed the needed information has really only become clear in the past 5-10 years and she's been doing this for 45-50. She it's no big deal to her.

Nekura said...

I'm in a dilemma now where I have no good family doctors in my area. The best, who perhaps saved my life due to her willingness to stick her neck out for me and prescribe strong painkillers for a 24 year old because she believed I had IC before I got diagnosed (and had a bladder scope done on her and she knew the pain, so understood why I wouldn't have one or be diagnosed until a better method was found), still believes paps are necessary every year under no condition. Recently I was told there wasn't enough cells and I had to go back (because I had valium stuffed up there the night before, because, you know, I have IC and it hurts). I thought it'd dissolve by morning but didn't.. Lead to some laughter from the two of us, but wanting me to go back for a test I don't believe in is harsh. I growled over the phone to make them wait six months when it wasn't mid-winter to get naked again. They obliged. Everything else about her practice is fantastic, but its just she's been ingrained with that mentality from the horrible doctor's she's having to work under since she's a NP. I could fight it, yes, but I don't want to "break up" with her because she's truly the best in the region when it comes to dealing with people like me who's terrified of doctors in general. I don't even know how to bring this up without insulting her. I questioned her about every 2 years since that's the new guidelines but she said no, not ever until you're 65 which I know is a load of horse crap. But she just doesn't know. And like I said she's my only resource for so much. I did get diagnosed with IC so my Uro is taking care of my pain meds, but I still need a family doctor I can trust for general illnesses and such.. plus since IC is a pelvic pain disorder a basic exam is kinda necessary on a routine schedule (not the pap though). So I'm not really sure how to handle this. She's very firm in her beliefs, but she's still a caring person. Allowing me to avoid it for 6 more months shows she remembers my loathing for the exam. And to her credit she never pressured me into starting to get it, but did need a pelvic done for the IC thing and once she say there was no infection or anything she agreed with me, and the exam wasn't bad which gave me courage to have the pap (which gave me panic attacks on a weekly basis) and find it was *that* bad, but emotionally it leaves me shaking regardless.

I don't want to fight her. The main reason here why they enforce it is because evidently the BC pill can make the cancer grow faster? Any insight on that? If I can prove that wrong then I think I can gently win the argument.

Joel Sherman MD said...

I note that it is slowly becoming recognized that we over test in all areas. All regular screening is being looked at more carefully.
This article also contains a reference to a CDC article (which I couldn't find) which questions why if women need Paps only every 2-3 years, what is the value of annual pelvic exams? Exactly.

Nekura said...

May I draw all your attention to this: http://www.digitaljournal.com/article/319756

tl;dr pro-lifers passed a bill forcing women to have a vaginal ultrasound before obtaining an abortion. Doctor has no say in the matter.

That's the article I wrote on it. More depth can be found in Google.

Nekura said...

Something else.. Who do we challenge about this issue of the pap smear? My GP just won't listen to a word I say and outside of the 3 hour trip to Baton Rouge there's no planned parenthood with HOPE around.

I don't want to lose my GP, but how do I politely bring this issue up without feeling entirely ignored or insulting her? Or better yet, who do I send my hate mail to?

Joel Sherman MD said...

Nekura, I like your analogy to forcing men to have a rectal exam to get a Viagra prescription. It's about as pertinent as a transvaginal ultrasound.
In terms of your own GP, give her lots of references and hope she will read them. If she's open minded it should make a difference.

Anonymous said...

Dr Sherman, regarding your wife you wrote "Afterwards, for the first time ever, the gynecologist told her that at her age she didn't have to return unless she had a problem."

It's an interesting comment by your wife's doctor as cancer is usually a disease that is more common as we age. I realize of course that we get to a point when we will die with cancer rather than from it and it is best to leave a cancer alone at a cetain age but I am guessing your wife isn't 80+ years old yet.
And also considering that I have heard stories of 90 year old women in nursing homes being forced to have pap smears, I find your wife's doctor's comments a little suspiscious. And I wonder if her doctor wouldn't have let it go so easily if you weren't a doctor.
Mary

Joel Sherman MD said...

Mary,
The evidence is clear that past age 65 or so women with negative histories, i.e. prior negative Pap smears, don't need them anymore. That may not apply to women who continue to be active with new partners.
None of that obviates the benefit of recommended Pap smears in younger women. Here's a recent study from Sweden which validates it.

Anonymous said...

Yes Dr Sherman but I was thinking more of the pelvic exam part. Doesn't ovarian cancer risk increase with age? And isn't that what Drs are checking for when they do a pelvic? (even though the evidence shoes that pelvic exams are of little value).
It still doesn't add up to me. Well woman exams are promoted as being so "vitally important" except when a doctor's wife questions it.
Mary

Anonymous said...

Mary: As far as I understand, ovarian cancer cannot be detected with a pelvic exam. It is a difficult cancer to diagnosis early and even the vaginal ultrasound has not been recommended for routine screening. I understand that a pelvic is basically done to check the external and internal genitalia for abnormalities, such as lesions or evidence of an STD, as well as the general health of the ovaries and uterus that can be palpated. Of course it is also a time when they may do a PAP test. However, there has been quite a bit of evidence lately that a pelvic exam alone is totally irrevelant and has no value on asymptomatic women, which I totally agree with! If a woman has a reason to suspect an STD or is having some other troubling symptoms, then by all means one may be warranted, otherwise I see no reason whatsoever for someone to have their genitals checked on a regular basis. Men are not recommended to have their testicles checked on a regular basis and testicular cancer is probably just as common as ovarian cancer. Men also are not told to have yearly genital exams and they also can have STDs. I do realize that their sexual organs are external and so they may more easily notice if something is amiss, but if a woman has a problem she more than likely will also know even though (most) of her sexual organs are internal.

Joel Sherman MD said...

Mary, I claim no expertise in gynecology but the above post is my understanding as well. I do not believe that there is any effective way to screen for ovarian cancer before it has spread. I do not believe that there is any significant value to a routine pelvic exam in an asymptomatic woman.
Pap smears can be defended if they are done within current guidelines which are frequently not followed, but routine pelvics add little. The doctor's advice to my wife certainly conforms to those beliefs.

Elizabeth (Aust) said...

I agree, Anon.
I'm 54 and have never had a routine pelvic exam and would never allow one, they carry risk and are unhelpful in asymptomatic women.
Your Dr Carolyn Westhoff believes they partly explain your high hysterectomy rates and women losing healthy ovaries and having other invasive investigations.

I think the readiness of the profession to tack on unnecessary and even harmful exams should be challenged and that probably needs to come from women. I've told my GP that I don't want any extra tests or exams...they may sound simple, but can lead to some serious places...like the CA125 blood test - very unreliable and the next step can be invasive investigations and even surgery.

If it's unnecessary, unhelpful, unproven, controversial or harmful, I don't want it - if it's elective, I want all of the relevant information and that means doing my own research, women have never received balanced and complete information on cancer screening.
I will decide whether I want the test, not the Govt or my doctor.

STD's - I know US doctors say that's part of the reason for the pelvic exam, but our doctors offer blood and urine tests to check for STI's (if women are worried about them) and may ask the woman to provide a self-collected vaginal swab.

It wasn't that long ago that women might have their breasts opportunistically examined (and it still happens with some doctors and in some countries), but this exam is not recommended for good reason - it's unfortunate that women have to be aware of that and refuse the exam - some doctors carry on even though it's no longer recommended and this simply exposes us to risk. If a doctor suggested a routine breast exam to me, I'd change my doctor. If the exam doesn't help, but exposes me to risk, why do it?

Pap smears - the fact is most women don't need them, pap testing should only be offered to HPV positive women aged at least 25, preferably 30. Pap testing a HPV negative woman just exposes her to risk for NO benefit.
Once again women will have to refuse unnecessary pap testing and demand HPV primary triage testing or the Delphi Screener while the profession lags way behind the evidence.
The profession can no longer say all women are "at risk" and should have pap tests, they can identify the 5% at risk who might benefit from pap testing and the 95% of women (HPV negative) who are not at risk who can be advised to test infrequently for HPV (and even test yourself) or if monogamous or no longer sexually active...forget all testing.

I've read 5% of women are HPV positive by age 40, it's actually 5% of women are HPV negative at age 30. Those under 30 don't benefit from pap testing.
The Dutch are not testing women under 30 at all - pap testing or HPV tests - these women are simply told to see a doctor with persistent and unusual symptoms. Testing doesn't help and just causes worry and over-treatment, so common sense prevails. Not so in this country...it's serious over-screening for all women as usual, including the 95% of HPV negative women.

Joel Sherman MD said...

Hopefully you're now aware that once again the American Cancer Society and the USPSTF have endorsed greatly loosened recommendations on the need for Pap testing, lengthening them to every 3 years for women at low risk and every 5 years if in conjunction with HPV testing. Very importantly they have updated and strengthened age guidelines. For the first time they recommend against doing Paps in women under 21 and over 65, that is to say that they do net harm in these age groups.
It is inevitable now that these guidelines will dribble down to the significant number of general docs and gyne's who still preach every year. All of you who have been fighting for this should take a bow.
The evidence has become so conclusive now that even my wife is convinced of it. After near 50 years of annual exams, she is done with it.
Here's a brief official summary from the USPSTF.

Joel Sherman MD said...

Here's an interesting column from a UK physician outlining why she's not going to have Pap tests and how they have hassled her because of this.
Fits in well with the information we've documented before.

Elizabeth (Aust) said...

I just stopped by to post that link, but you've already posted it...hope it makes the papers here, although most unlikely. I'm currently reading a book that explains a lot...and I see clearly what we're up against and they don't fight fair. "Mammography screening: truth, lies and controversy" by Dr Peter Gotzsche. I've also ordered a copy of Dr McCartney's book, "Patient Paradox"...I wish some of our doctors would find a conscience and a voice.

Anonymous said...

I have enjoyed reading your blog and discovering all the evidence regarding pap screenings. I am a 54 year old woman and I have avoided going to see my GP for many years as I do not like the constant harassment regarding getting a pap smear done. Recently, I had a persistant cough and I finally gave in and made an appointment with my local practice. As I haven't been seen for many years, I had no idea of the names of the doctors. The receptionist made an appointment for me with a new young female doctor. Can you guess what happened?!!

"Hello Mrs B" says the doctor, "before we go any further, hop onto the couch - I would like to a take a smear as we haven't seen you for a while".

At this point I hadn't said a word !

"I would like to talk to you about my cough" I said.

The doctor said that she couldn't help me until we had got this "little situation" sorted out.

I got up and left.

I am going to make an appointment with a herbalist instead.

Mrs B

Joel Sherman MD said...

Mrs. B, I'd recommend that you file a complaint with the state medical board. They won't take any action against the physician but the complaint should get back to her. Make the complaint as courteous as possible, but point out that it is unimaginable that a doctor would refuse to talk to a male patient until he submitted to a prostate exam. I can't imagine why they think a Pap smear on an asymptomatic woman is more important than her present illness.
But I can't say that I recommend seeing a herbalist for a cough.

Anonymous said...

Dr Sherman

Thanks for the advice. I will be writing to the surgery and the Local Health Authority - although I do not expect to get a positive response. The last time I complained about the bullying and scolding regarding pap smears, I was asked to seek medical care at another surgery.

As for going to see a herbalist about my cough - this was a hasty comment made in the heat of the moment. I have made an appointment with a local private hospital at my own expense.

Thanks again

Mrs B

Eliz(Aust) said...

I think every woman who makes clear that cancer screening is her decision helps to improve an unacceptable situation. It's shocking to think women avoid medical care or have to face hostility, patronizing lectures etc because they choose not to have an elective screening test for a rare cancer.
Dr Margaret McCartney at her health forum has another article on cervical screening...compare the NHS information guide for cervical and prostate screening...men get facts, women get platitudes about yoga, green tea and chocolates. We need to complain whenever we see or experience abuse of our rights and unfairness...Good luck, Mrs B, so pleased you stood up for yourself and given that doctor something to think about...we're not objects they can simply order about.

Anonymous said...

I think it is shocking that woman who have made informed choices about getting a smear are continually driven to have one. If you make an informed choice it should be respected.

I am glad I made the choice to have my pap smear. I was diagnosed with cervical caner aged just 26. I have never 'slept around' and only ever had one partner, I do not smoke and rarely drink, I excercise 3 times a week and pay a lot of attention to my health. Will be forever grateful to the Pap test.

Everyone who gets annoyed by those letters that keep appearing on your mat - trash them and continue your daily business. Think of them like adverts for a local store try not to get stressed (it might increase your blood pressure!) and lets just be thankful that you are at such a low risk for what is a horrible, horrible disease.

Elizabeth (Aust) said...

It's interesting, but I'm sure when women become more informed, things will change fairly quickly.
I was participating on an Australian forum with a number of other women, challenging some advice being given by a doctor in an article - to have 2 yearly pap tests from 18 or even younger. The doctor did not respond to our comments at all, but she was interviewed on television recently - a golden opportunity to go on about pap tests for 10 minutes, and even though the interviewer mentioned pap tests, the doctor completely avoided the subject and said not one word about them. I feel our comments may have shocked and concerned her or even prompted her to do some reading (or perhaps it was the realization more women know what's going on and that increases the risk of complaints and legal liability) - 2 yearly screening IS over-screening, pap tests have nothing to do with the Pill, informed consent does apply to women and young women should not be pap tested...

I don't believe our doctors can hide behind the program - they should be acting in our best interests. They can say nothing, wait for the program to change and properly advise their clients or at least push for change (lobby the AMA to release a statement etc), but I believe it is a VERY serious matter to be vocal/high profile and provide women with incorrect or misleading information and bad medical advice. The delay in changing our program should have prompted more doctors to depart from the program....there is little risk when the evidence is overwhelming - our program is excessive and that greatly increases the risks for no additional benefit. This program can only survive with the co-operation and silence of doctors. At the very least GPs should properly advise their patients and leave the decision to them, not recommend or push over-screening.
Some of the comments and press releases made by the AMA make you realize that bodies like this are very political and don't necessarily act in the interests of women (or men) or may give us bad advice if necessary...for political or other reasons.

Anyway, it's a tiny step, but at least it's something.
I have always believed all of this is only acceptable (and possible) because most women don't have the facts or know what's going on...hopefully, that's changing. More doctors should understand they can't spout any old garbage and get away with it anymore, they may very well be challenged by informed women and find they have nowhere to go, the facts are not on their side.

Joel Sherman MD said...

I have no doubt that your efforts make a difference Elizabeth. One step at a time is all you can hope for.
Your story is similar to the apparent turn about by Dr. Margaret Polaneczky who shut down talk on her blog on Pap smears and later apologized on being challenged. Later she wrote an article about over screening for breast cancer. Providers can be educated.

Elizabeth (Aust) said...

http://www.bmj.com/content/344/bmj.e804/rr/577081

Dr Sam Shuster, UK Professor of Dermatology, has strong views on screening and certainly not the usual advice to get screened.
He says: "Cancer screening programs manufacture spurious disease; they should be stopped until the diagnosis of early disease is improved." He talks about cervical screening, one screening test that usually escapes close scrutiny and he's written articles on the scaremongering with melanoma. Dr Shuster says that incidence has not gone up at all, it's just more are being diagnosed with melanoma....I assume with doctors erring on the safe side and with more people having screening skin checks.

"I and my colleagues showed that the reason mortality has not increased with incidence is that the tumours reported are actually benign; they are not true malignant melanomas."

He also has a controversial point of view on UV exposure and says it has no effect on the likelihood of melanoma. Interesting...I've often wondered how that could be the case when they sometimes appear on parts of the body that are always covered up.
"Unlike the benign tumours that really are caused by UV, melanomas do not predominate in sun-exposed skin. There are commonsense reasons to avoid sunburn, and for use of sunscreens – but not, as Cochrane implies, to prevent melanoma, for which they have been shown to be ineffective."
http://www.guardian.co.uk/commentisfree/2010/jul/21/melanoma-myth-skin-cancer-sun

Joel Sherman MD said...

Thanks Elizabeth. As you probably are aware screening tests are coming under much greater scrutiny in the US for a host of diseases.
But melanoma is a new one for me. I'm not aware of any real screening test for it apart from an annual visit to a dermatologist. (Sounds reminiscent of annual Pap tests tho.) I've never heard the claim that many diagnoses for melanoma are false positive for malignancy. I'll keep an eye out for further info. Unlike cervical cancer, I've known several people (acquaintances not patients) who've had the disease with spread.

Joel Sherman MD said...

The AMA has come out with a statement opposing the new screening standards for mammography and PSA testing.
All this is in opposition to the USPSTF standards released in the past year. Screening standards will remain controversial for some time.

Joel Sherman MD said...

This comment was posted to the cancer thread Part 1 where it cannot be published. I have copied it here:

I don't know if this is covered in this post or not. I didn't have time to read all of this. Hope to later. Some of these post reminds me of the last time I gave birth. Just when I was about to have the baby the nurse ran out of the room and I swear there was like 20 people in the room next. I think she went outside and invited everyone she could find. And I wasn't exactly in the position to say anything or stop it. I wasn't expecting to be in a show then. What's up with that? Shouldn't they tell you before the baby pops out that by the way we plan on inviting the whole city here to see this? Dorothy

Anonymous said...

Dorothy

I read your post with interest.

A few years ago, I had a similar experience when I gave birth to my first son.

I was sitting up on the bed with a fetal monitor on my stomach and all was well. My husband was sitting next to me and the nurse was holding my hand, just the three of us.

After about an hour, I felt the need to push and made this clear to the nurse, who stood by the door and shouted "It's time!". As if by magic a dozen or more people in white coats came into the room and stood at the end of my bed.

I was in no position to say anything but luckily for me my husband was and he chased them all out of the room.

After the birth, my husband had calmed down enough to ask the nurse what happened.

She just shrugged and said that some student doctors wanted to see an unmedicated natural birth and she didn't think we would mind!!

I was so angry. This women held my hand and looked after me for hours whilst I was giving birth and at no point did she think to mentioned the student doctor ambush.

I felt so let down my the hospital that I had my other children at home with just me, my husband and a lovely midwife.

Micky

Elizabeth (Aust) said...

I've given up on one doctor's blog, I won't go near her blog again, I was only tempted to post because she called for opinions, but obviously did not care for mine.
More doctors are prepared to be open and allow critical or informative posts to remain - the desire to conceal information or keep women in the dark is slowly fading...and about time!

Some doctors however will call for opinions, but basically want women to agree with them or post fairly neutral comments - real information is still viewed as a threat. One of my posts was recently deleted because the doctor suspected I was "marketing" - I assume because I mentioned the Delphi Screener. If she had just deleted the name of the device or the couple of lines to do with the self-test option, so be it, but to delete the entire post makes me think she was unhappy for women to know about the new Dutch program. If women, her patients, who must follow her blog, were to see that most women are not even at risk and don't need pap tests, biopsies etc...that might see more women asking about HPV primary testing and declining the excess.

I firmly believe it's the complete absence of real information that has prevented women making informed decisions about testing and protecting their healthy bodies, you can't assess risk and actual benefits when you receive no real information. It's the concealment of facts that has enabled this program to harm so many by testing far too early, far too often and testing inappropriately...few have been given the opportunity to assess whether they'd prefer to carry a 0.65% risk of cervical cancer or a 77% or higher risk of colposcopy/biopsy. Now the equation is different...would women prefer to find out first whether they can benefit from a 5 yearly pap test when they're aged 30+? Are they actually at risk?

Some countries may never offer women evidence based screening, they're so far the other way...but I simply lose respect for those doctors who IMO, practice censorship. I've heard so many times over the years that anything that might put women "off" testing should be concealed, it would be irresponsible to release it...basically saying IMO, that women are not competent adults and cannot be trusted to make decisions - others must do that for them and accept risk on their behalf...I reject that thinking and always have, it's insulting.
Change is happening whether these doctors like it or not...every time I come across a defensive doctor, I appreciate this forum all over again.

Joel Sherman MD said...

Thanks for the vote of confidence, Elizabeth.
Here's new information about the long term benefits of HPV testing, lasting up to 18 years! That's not the same as saying you can go 18 years safely following a negative test, but hopefully the guidelines will eventually widen the recommended gap between testing.

Anonymous said...

Phew, finally made it through 7 pages.

I was wondering whatever happened to the blood tests for cervial and ovarian cancers. I can find studies and manufacturing information but nothing on getting the actual testing done.
From most reports, these tests are far more accurate than smears and ultrasounds so why haven't they been available to the public?

I am someone who deeply resents and finds the process of a smear traumatic and I would far rather have a yearly/2year/5year blood test than submit to that indignity ever again.

I'm in Australia and have never known anyone with or has had cervical cancer. Breast, colon and ovarian yes but never cervical cancer. Ovarian is a bigger threat of cancer for me but trying to get something other than a trans vaginal ultrasound is impossible. Ultrasound finds masses it is useless when actually diagnosing cancer.

Blood testing has come leaps and bounds in the last decade, why are the powers that be stalling on more accurate testing?

Joel Sherman MD said...

Sorry not to be able to help, but I've seen no current info on blood tests.
I'll post it if I do.

Joel Sherman MD said...

Here are the most recent USPSTF recommendations for cervical cancer screening. For low risk women, every 3 years between the ages of 21 and 65. No screening needed outside of those ages.

Elizabeth (Aust) said...

It's interesting that now it should be no risk or at risk women, not high and low risk...those HPV positive are the only women at risk and with a small.chance of benefiting from a 5 yearly pap test. Categories of high risk women are not high risk, they are no risk if they're HPV negative. It's your HPV status that shoud guide testing, pap testing a HPV negative women is pointless.

Calling women low and high risk catches all women, most of whom are not at risk. I wonder whether countries that don't have evidence based programs will ever stop testing those not at risk, about 95% of women aged 30 and older...and those under 30 don't benefit from either test, pap or HPV test.
Moving to an evidence based program means most women won't be having pap tests, excess biopsies etc...the profits generated by these programs is huge, I think the temptation to keep testing everyone and piling up the tests must be great...women will have to protect themselves and find a doctor prepared to act in their best interests.

Joel Sherman MD said...

Elizabeth, the guidelines downplay the use of HPV probably because the USPSTF didn't think there was enough documentation. If you're HPV negative your risk remains miniscule,as long as you're in a monogamous or abstemious situation. The committee is just afraid to say that IMO for fear women will be misled or lie about the reliability of their partners.
I still back my informed consent article. I believe if women had all the facts, 20-50% could safely discontinue all screening.

Anonymous said...

Dr Sherman if you can post this comment, I would appreciate it very much. It looks like we have lost the massive blog "unnecessary pap smears" that is a huge resource for women. I am starting a new blog to keep in touch with the women who regularly post there. So could you please post this so I can give them an alternative site. Mary
http://unnecessarypaps.blogspot.com.au/

Joel Sherman MD said...

Mary, as far as I can tell blogcritics is still live.

Anonymous said...

I can access blogcritics but not unnecessary pap smears. I'll need to check on another computer.
Thanks. Mary.

Anonymous said...

Dr Sherman, I think then I have been banned! Another poster Jacqui said she cannot access the site anymore either. She and I are probably the most vocal.Mary

Joel Sherman MD said...

Mary, I'm not sure what happened but I can still access the blog including comments from today. I can probably post a comment.
If you send me an email I'll post it on the blog for you. Look under my profile.

Anonymous said...

Hi Doctor Sherman - thank you so very much for being a decent human and doctor. From a woman's point of view it is so lovely (and very rare).
My name is Jacqui, and I am one of Mary's rabble raiser friends over at Blog Critics, and I am still having lots of trouble getting onto the site. I have found Mary's blog through this posting though, so thought I would let her and Elizabeth know that I have posted over there, as well as say thank you to you.

Anonymous said...

Thnk you for helping out Dr Sherman It appears that anybody outside the States cannot access the website anymore. But those that are denied access have now made contact. Thanks for letting us use your blog to allow us to get in touch.
Mary

Anonymous said...

where exactly does it say that women have only a 0,65% risk in a lifetime to get cervical cancer?
I don't think I've read it on the Angela Raffle paper which always is being referred to..

Joel Sherman MD said...

Anon, I have done a Google search on lifetime risk of getting cervical cancer. Multiple sources (not Raffle offhand) do give similar figures. The incidence is clearly under 1% with the exact number varying depending on multiple other factors including your location, ie what country you live in.

Anonymous said...

Dr Sherman have you seen the National Cancer Institute's statistics? They quote the lifetime risk of cervical cancer at 0.68% but they say the probability of developing cc is even lower at 0.25% between the ages of 50-70.
Also I have Angela Raffles book on Screening and she quotes the figure for the chance of NOT dying of cervical cancer if you have never been screened at 98%.

http://seer.cancer.gov/statfacts/html/cervix.html
Mary

Anonymous said...

thanks for the info on the percentages.

They usually say that women who have never been screened, have a higher mortality rate from CC.

Even if that is true, the number is negligent as it is so low anyway.

But an explanation may also be that those who steer away from the gynecologist, still have their uterus intact as opposed to many who have it removed even for benign reasons and therefore have a lower chance in dying from CC. Furthermore this leads to a higher incidence of heart diseases (and other problems).

So if they already think they are saving women from dying of CC, how many might have died from heart diseases instead 'thanks' to their so called life saving hysterectomies?

Elizabeth (Aust) said...

They say that most women who die of cc have never had a pap test or haven't had them regularly, but the fact is the only women at risk who can benefit from a five yearly pap test at least until they clear the virus are about 5% of women who are HPV positive and aged 30 and over. If women could test, including self testing, at age 30, you'd save more women and spare vast numbers (about 95% of women) from a lifetime of unnecessary pap testing and over-treatment. A HPV negative woman may never have had a pap test, but that does not mean she has an increased risk of cc, she is not at risk from cc and cannot benefit from pap testing. Pap testing can only benefit HPV positive women and is only recommended in evidence based programs for those over 30.

Dr Sherman, the target payment for pap testing now requires GPs to screen 70% of their patients and more concerning stories are appearing...a woman posted at Blogcritics recently that she developed chest pain and with a history of heart disease in her family, she went to see a GP...she was asked about pap tests, she explained why she had decided not to have them and unbelievably, was told he couldn't help her and she couldn't be a patient of the practice...the woman left with no treatment. She believes the doctor didn't expect her to leave, but apparently, made no attempt to encourage her to stay so he could deal with her symptoms. It sounded like a stressful and upsetting exchange took place...with a woman experiencing chest pain.
Now surely a competent doctor would see the risk here, apart from being unethical conduct, using coercion to force a woman into testing when she's made an informed decision not to screen, but what if she'd collapsed leaving the surgery...surely, that would be a very serious problem for the doctor...I refused to investigate her chest pain because she'd chosen not to have pap tests. I've suggested she make a formal complaint, but the increased target IMO, is leading to more pressure in the consult room and this sort of conduct.

So, even if some (and the numbers would be low) women are helped by pap testing, how many women end up worse off because they can't access medical care or end up avoiding doctors because of the pressure to screen? We're told never to ignore chest pain, great advice, but then hassled about pap tests...incredible.

Joel Sherman MD said...

Elizabeth, is your example from Australia? Hard to believe a physician here would risk ignoring chest pain because of a Pap test. In this country the malpractice risk would be immense.

Elizabeth (Aust) said...

Yes, here in Australia...I think the woman involved will make a formal complaint. I also found it incredible, but it seems some of our doctors are taking the new target very seriously and putting that ahead of everything else and I assume some practices may also put pressure on individual doctors to help reach the target.

Given our program is under review and it's clear we seriously over-screen, you'd think they'd wait for the review, but the fall in the number of women screening to the lowest in a decade has prompted the Govt (obviously after taking advice from medical advisors) to actually increase the target...which means more pressure in the consult room.
I think our Govt is being very poorly advised, it's bad medicine. I think the fall is due to more women working out they don't need 2 yearly pap tests from teens to age 70 (26 or more) and more doctors properly advising women.

Joel Sherman MD said...

Here's an article that some may be interested in concerning a Canadian woman's fight to obtain full informed consent in labor and delivery. She has set up a website as well.

Joel Sherman MD said...

Apparently the ACOG has just released new guidelines for Pap screening saying that low risk women between ages 30-65 need screening only every 5 years instead of the prior 3 year recommendation. I haven't seen yet the actual release, but will give the link when it's out.

Joel Sherman MD said...

As far as I can tell, the ACOG issued a press release only and not full formal guidelines. Nonetheless they now recognize HPV testing and say when both Paps and HPV are negative, a woman can now safely go 5 years without retesting between the ages 0f 30-65. This is much closer to most European guidelines than we have had before. They still recommend every 3 years from 21-30. Above 65, they don't say, but most would say it's not necessary anymore.

Of course, the ACOG still recommends a yearly well woman visit, whatever that is, for everyone. They still want to do your yearly pelvic exam, though there is almost no justification for it in an asymptomatic woman.

Anonymous said...

Do you think that the yearly pelvic exam will get ditched in light of The Affordable Care Act now fully in place? Any thoughts Dr. Sherman if ACA is a good or bad thing for Americans?

Joel Sherman MD said...

I don't claim to be a politic pundit, but I doubt very much that there will be any push to disallow a covered yearly well woman exam. The ACA guarantees an annual well patient exam which I assume would cover a pelvic exam.

Elizabeth (Aust) said...

I wonder why they're pulling back on pap tests for those over 30, based on evidence, but continue to recommend screening for those under 30? There is no evidence of benefit for those under 30, but lots of harm, these women produce the most false positives. Countries like Finland and the Netherlands have excluded women under 30 for as long as I can remember (and that's quite some time)...but America is still moving in the right direction. (although many doctors are still recommending over-screening and forcing women into unnecessary exams and elective testing to get the Pill)
The continued inclusion of the routine pelvic exam is another bizarre thing, when the clinical evidence there is also poor, with significant harm. I also noticed the well-girl exams promoted by ACOG seem to include a visual inspection of the genitals...one spokesperson said, "to check the girl is developing normally"...surely you'd also then want to check boys are developing normally? These exams are not recommended here, in the UK and in most other countries, I think they must cause psychological distress to some girls. I can't help but feel it's grooming girls. I've read a few comments that pointed that way..."that the exams get easier for women if they're started at an early age" - normalizing the exams like they are simply part of your healthcare, like going to the dentist.
Those sorts of comments make me very uncomfortable.

Joel Sherman MD said...

Elizabeth, I do not know what the justification is for recommending more exams under age 30 than above.
I fully believe that the recommendation by ACOG for yearly exams is self serving with little justification. The US is the only country where OB-Gyn's are treated as primary physicians. It really is not rational. Well women care can easily be done by GP's or internists. Their desire to do well girl exams on all adolescents is outrageous.

Boys though do usually get a genital exam with annual visits to their doctors. It varies from doctor to doctor. Nobody recommends they see a urologist for that though.

Elizabeth (Aust) said...

I've read and heard about the annual physical some/many Americans have every year and I can honestly say at the age of 54 I've never had anything as comprehensive, not even close. Sometimes well established things are not even questioned...just something you do every year. It may take a very long time to wind back these exams and over-screening etc even with mounting evidence a certain exam or test is of no or little benefit or even harmful. I know reading some of the American health forums many people feel reassured after these annual exams....but is it largely false reassurance. I know some women feel fearful without these exams and have said to me, "how do you know you're healthy without these checks?"...it's a different way of thinking, in my opinion, focused on illness rather than wellness.

I do think some screening is a good thing, like monitoring your blood pressure. The crazy thing is some women now avoid doctors totally due to pressure to have well-woman checks and/or cancer screening...so that means no medical care at all.
Heart disease is the No. 1 killer here, yet screening for a rare cancer keeps some women away from doctors and some may have unchecked high blood pressure and other issues....we overlook the elephant in the room searching for the ant.

I'm not sure if you're aware of "The Conversation" where Australian and other academics post articles on various topics, lately there have been quite a few articles on cancer screening and recently Prof Michael Baum co-authored an article on the UK breast screening review with Assoc Prof Bell and others.
Thought you might find it interesting.
http://theconversation.edu.au/is-routine-breast-cancer-screening-doing-more-harm-than-good-10531

Joel Sherman MD said...

The ACOG has come out with a statement supporting the use of over the counter contraceptive pills.
This is important to know. It will make it very hard for any Ob-gyn to insist on an annual exam to continue prescribing OC. It represents an implied major shift in policy.

Elizabeth (Aust) said...

I wonder why....when "requiring" pap tests, pelvic and breast exams for the Pill has been the norm and letting women leave empty handed if they refuse. It is no doubt inconvenient and expensive for many to see a doctor for repeats, but the unnecessary extras were the main problem. These exams and test were never clinical requirements for the Pill.

I know they still recommend these exams to women. If however, you can get the Pill OTC and as more women understand these exams are unnecessary and even harmful, and that pap testing has been seriously overdone, (and most are not even HPV positive and at risk) their business is likely to fall. Although I'm sure some women will be suspicious of this change and continue using a doctor after decades of well woman exams.

They've always known these procedures put some women off the Pill and getting medical care generally...and these "requirements" probably led to unplanned pregnancies, abortions, ectopic pregnancies and miscarriages, why would they suddenly care? Could it be political pressure - to wind back the huge waste and expensive excess?
Regardless, a major step in the right direction.

Elizabeth (Aust) said...

Scotland has finally decided to raise the start age for cervical screening to age 25, in line with England and apparently, Wales will be doing the same thing. Sadly, it's not likely to happen before 2015, so women will be unnecessarily tested, worried and harmed in the meanwhile. Here we're still testing young woman, some of them are only teenagers, and we test 2 yearly, guaranteeing enormous referral/over-treatment rates.
At least the States is now 21, but horrifying to think it includes women who've never been sexually active.
http://www.gponline.com/News/article/1163720/Scotland-raises-cervical-screening-age/#disqus_thread

Joel Sherman MD said...

Thanks Elizabeth. I had seen that and meant to post a link, but then forgot.
Probably the US will be 5-10 years behind in accepting this age guideline.

Joel Sherman MD said...

Hopefully most people know that you usually don't need a Pap smear after an hysterectomy.
It's astounding that it still gets done more often than not.

Anonymous said...

As I understand it, the cervix is removed when a total hysterectomy is performed. So, my question would be - what cells are found when a pap is done? Surely the sample must come back as inadequate as there are no cervical cells left ! JT

Joel Sherman MD said...

Anon, I gather from brief reading that a Pap is only indicated after a hysterectomy if the hysterectomy was done for cancer. Presumably then a Pap smear could detect cancer cells in the vaginal vault.

Joel Sherman MD said...

Here's an article in the NY Times blog quoting gynecologists saying that American women are pushed into unneeded routine pelvic exams.
It's hardly new information but it's about time American physicians began to recognize it.

Anonymous said...

Funny (or really not so funny) that most of the comments want to preserve the practice of annual pelvics on asymptomatic women in the above referenced blog. It will take either many years or some monumental shift in women's (and doctor's) thinking before we see a change in this whole practice, in my opinion. In the meantime, women like me just go about our healthy lives without a second thought about having an annual gyn exam and have no regrets or fears about that decision. Jean

Joel Sherman MD said...

A free article from the NEJM documents how women can be charged $1000 for a Pap test! That's done by checking off at the same time a series of related though often unnecessary tests that can be ordered at the same time.
Every woman should ask what's being done before you get stuck with a very expensive bill.

Joel Sherman MD said...

The biggest story in a long time was released today. The FDA no longer recommends Pap smears saying that HPV testing is now the standard of care.
It's about time they updated these recommendations again.

Anonymous said...

The link doesn't take us to the story but thanks for letting us know.Will do my own searching for it.
Annie

Joel Sherman MD said...

Thanks Annie; that link sure expired quickly.
Here's one that hopefully will last longer. It's impossible to keep all links updated unless someone notifies me.

Rads said...

Dear Dr. Sherman

Yes. that post is still thankfully there!
I do not have words to express my gratitude to you and this blog and all the information in this. I am a chronic hypochondriac with a history of sexual abuse and have been terrified of any sort of inspection into my organs when I dont have any serious symptoms. This site has opened my eyes to unnecessary tests and treatments which I had dreaded all these years. I am 50 and have had a few pelvic ultrasounds to keep an eye on my fibroids but have never done a pap smear. Something about it seemed so wrong and voilating. I see the numbers here and I am not sure if I have to be relieved that the risk is low or furious that we women have all been threatened, psyched and cajoled into an unnecessary test.
I wish I could share this whole information to several of my friends who dread this test time to time and feel guilty that they havent had this in a long time! Thank you and God Bless!

Joel Sherman MD said...

Another very important long overdue correction: The American College of Physicians says that women do not need routine annual pelvic exams.
I somehow doubt that the American College of Ob-Gyn will follow suit. Some Ob-Gyn practices would see their patient load decrease by over half. That would be a good thing. We may be the only western country where gynecologists pretend to do routine well woman check ups.

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