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Saturday, August 7, 2010

Women's Privacy Concerns Part 6

Part 5 is full. Please continue here.

200 comments:

Joel Sherman said...

This is the last post from Part 5.

Beth, I'm not sure what to make of your reference. I believe I commented on this before after reading that the patients described here had a congenital masculinizing syndrome and pathologically enlarged clitorides. That's a condition no woman would want, and surgical correction seems reasonable. Obviously the resulting sensitivity of the clitoris would be important to the girl so the concern is valid. But I can't clinically comment about how appropriate or ethical their testing procedure is without knowing a lot more about it. You need some kind of testing to evaluate a new procedure.

Anonymous said...

"They don't care women suffer physically and mentally from these tests. It's all about potential life instead of actual life.

That's all women are apparently: Baby makers and cash machines."

Read the rest of the postings. These unnecessary tests can actually damage your cervix to the point where it's near impossible to bring a baby to term. Moreover, it was feminists who pushed the pap test through b/f fully considering its effectiveness and the costs of overscreening to women. Mainstrean feminists groups push these testings and scare tactics like crazy. These tests have also done a lot to destroy traditional femininity and masculinity by destroying feminine modesty and intimacy between spouses and a traditional father's desire to protect underage daughters from such bodily violation.
If you wanted you could say that society values women more than men by pushing this over and above prostrate screening, when prostate cancer is SO much more common than cervical cancer. Also the gyn. industry's medicalization of childbirth is what's responsible for the US having such a high infant mortality rate. This isn't some plot to keep you "barefoot and pregnant"-but more likely sterile and too psychologically damaged for men. (Additionally consider the high rate of hysterectomy indirectly and direcly linked to these tests.) Many feminists AND conservatives have spoken out against the gyn. industry's violating control over women AND children's bodies/bodily privacy. Let's not bring politics and victimology into this, those who question how modern medicine is today have so few allies to begin with. BNW

Amelia said...

I hate the creeping control over women. Sometimes I feel like I can hardly breath. I hate the power and control doctors have over us. You can be demanded to remove your clothing and be subjected to intimate probing for basically anything. I wanted to do some volunteer work in SE Asia and the Aid group told me all of these violating exams were "required" for female volunteers. I sent them a scathing letter and they backed right off. Why would they make these absurd demands in the first place? I'm a volunteer and have overseas medical insurance. It is completely unnecessary (and unwise IMO)but seems to be tacked on to almost everything. My niece had a battle with a University pressuring her to sign up for annual gyn exams, once again my letter writing saved the day.
This is all an aggressive and unethical try-on, but it astounds me how widespread and acceptable it is...on my last visit to the Dr for a persistent earache, the first question was, "When did you last have a pap smear?" and I fired back, "I'm here about my ear, please confine yourself to the reason for my visit or I'll find another Dr"...I really believe we need to do more of that. Many governments and doctors groups have encouraged doctors to ambush women in the consult room. We should make clear we're paying for a service and trying to sell "extras" is not on.
I'm delighted women are starting to fight back, I've noticed more women standing up and speaking out. I still can't understand though how doctors and others get away with lying to women. I thought medicine was about ethics. Women who go along with all of it "for their own good" often pay a big price. It's a very unhealthy and unhappy way to live.
Moreover it's the eagerness of the medical world to put women through the most violating and humiliating exams of debatable value that is really sickening. The price placed on female dignity is zero.

Anonymous said...

Amelia, You should have said "you're a doctor and you don't know the cervix isn't in the ear?
Sue

Margot said...

I've noticed more women are doing their own reading on cervical and breast screening.
Once the comments were predictable, now they're angry and informed, women citing medical journal articles and bailing up their doctors and asking for explanations.
I asked my Dr whether she gets a target payment and why it wasn't mentioned to me. She does get a payment, but said that info was irrelevant for patients. I disagree. I also asked why I'd never been told testing carried a 77% lifetime risk of referral and the top risk from this cancer is 1%...she said that info might confuse women. How insulting!
My figures were queried, but my BMJ articles backed up my statements.(thanks for the references)
My Dr and her partners are having a meeting to discuss my "comments". I mentioned if I'd already lost part of my cervix, I'd be speaking to a solicitor because I don't believe I was given honest information about this testing and the threat of this cancer.
They're speaking to Papscreen...I pointed out the brochure makes informed consent impossible and it's insulting to women. I wasn't even given a brochure.
Does Papscreen and doctors intend to make our health decisions and take responsibility for bad outcomes?
I don't think any woman should agree to LEEP, it destroys cells and evidence & hides unnecessary treatment after false positives and makes it impossible for the woman to take legal action. Always request a biopsy first before agreeing to LEEP.
A 77% lifetime risk of biopsies (for Aussie women) v 1% risk of cancer - very few women are aware of those shocking figures...the 1% is a top risk as well (as far as I understand) which means most of us have a less than 1% risk.
Thanks for your excellent article on informed consent, Dr. We all need to push for informed consent with this testing and all cancer screening.

Erica said...

My horrors with the healthcare system started when I was 17 years old. I was a virgin but refused to have a gyn exam just so I could obtain prescription birth control pills. I relied on my boyfriend to use condoms and 3 months into the relationship I had an unplanned and unwanted pregnancy. I think a lot of teens face this issue. I decided to have an abortion. I was having a procedure where "sticks" were placed into my cervix the day before the abortion to assist with dilation. My privacy was violated about half way through the procedure. While the RN was doing the procedure, a female counselor entered the examine room uninvited and unannounced. The woman was young (about 22 yr I guess). I suspect she had some education or maybe a bachelor's degree, but I knew for sure she was NOT a healthcare professional and she didn't act professional either. I was mortified that the table with the stirrups faced the door and the second the counselor walked into the room and got a view of me spread eagle on the table, her eyes immediately fixed on my vagina and she couldn't stop staring at the area of my body the entire time she was there. I thought to myself I wanted to pull the speculum out and stand up to leave, but I wasn't sure if I would hurt myself somehow with the 'sticks' being placed. We were in the middle of a procedure and I didn't need a counselor and I wasn't in distress. I managed to hide my feelings about the counselor's presence, although I was extremely angry and upset. The counselor came right up next to the RN and just starred and ogled the whole entire time. I was totally violated and I feel sick just thinking about it. I was young and taken advantage of. To this day, I have no idea why she was allowed into the room. Is a non-healthcare professional allowed into a room when that person has no purpose of being there and they are not training for this type of procedure. Also, isn't it a major privacy violation that I was not asked? Can healthcare providers just allow whomever to walk into a procedure where the patient is totally exposed like I was?

Joel Sherman said...

Erica,
What you describe is certainly a privacy violation. No personnel should be walking in and out of procedure rooms whether or not they are medical personnel if they are not part of the procedure. You should have complained, the sooner the better. I know that is difficult for a young person undergoing an unfamiliar scary procedure to do. But it is not too late though to write a letter to the clinic to register the complaint. Most places will pay attention to them.

Anonymous said...

Erica,
I want to know if you came to this site looking for help and if you have found help with this issue? Are you able to go to a Dr now?

Suffering from similar nightmare and looking for help, tear

Anonymous said...

This is what happens when doctors are allowed to create their own rules about the Pill. These "requirements" and they can be anything means many women take risks with less reliable methods.
The Pill is used to blackmail women and force unnecessary and harmful exams and tests.
How absurd to suggest that a woman can't have the Pill unless she has annual screening (excessive and supposed to be voluntary and with informed consent), a pelvic exam (of dubious value that carries risk and is not recommended at all in other countries) breast exam (no evidence of benefit, but they cause biopsies and unrelated to the Pill)...rectal exams - too ridiculous for words...none of these things are clinically required for the Pill.

Also, the top risk of cancer is 1%...what are the risks attached to an unplanned pregnancy, abortion or ectopic pregnancy? MUCH higher....
Yet doctors continue to get away with creating unnecessary and harmful barriers and many women suffer as a result - the ones who go along with the exams and those who avoid them.
It is shameful that this is happening...the Pill certainly has not liberated women, but has been used as a means of manipulating and harming women.
Ruth

Anonymous said...

Erica,
I had a problem with my first mammogram. (I'm not having anymore, how on earth could that barbaric ritual be good for your breasts!)
I needed to have xray guided needle biopsies of my right breast. I had the radiologist and nurse with me. They were fine, but then a psychologist entered the room without knocking...another female so I wasn't that concerned....apparently some women need support during this procedure. I was fine although scared, so she left. Had it been a male entering the room I would have been very unhappy and uncomfortable, getting off the table is very inelegant with your breasts dangling in mid air. (The biopsies are taken with you lying on your tummy with the breast exposed through a hole in the table)
If I'd been in your position it would be an entirely different matter and I'd want the bare minimum in the room unless the other person had been cleared with me beforehand.
Perhaps with female personnel they assume women won't mind and the same with men.
We need to remind them that's not the case, your procedure was very intimate and your privacy was violated and by someone who sounds very insensitive, staring at you like that...
I'd send off a letter letting them know some women are not happy for other people to enter the room during a procedure.
I'd also write to the authorities and point out the Patient Bill of Rights says gyn exams are unnecessary for birth control pills and give them details of the Dr who refused you the Pill without a gyn exam. More women need to tackle this problem head-on, the doctors are misusing their power and women are being harmed in the process. If you'd been able to access the Pill, you wouldn't have needed that procedure.
If you go over to blogcritics and unnecessary pap smears and look at Caren's posts, she tackled the system, found out about the Patient Bill of Rights and has been able to get birth control in the States without exams. More women are refusing to allow doctors to blackmail them, violate their rights and bodies and make them manage with condoms - we have rights and the doctors are in the wrong, we need to let them know it won't be tolerated any longer.
Kate R

Erica said...

I am no longer a teen and a number of years have gone by, but I can’t help but think that if I had had access to oral contraceptives without the hassle of being told I needed a full gyn exam (that I totally refused anyway) then I would not have suffered the negative experiences that I did. I know I am not alone in this.

This website is helpful in discussing issues I otherwise find difficult to talk about with other people. For example, when I mention issues (to my significant others) related to accessing women’s healthcare and oral contraceptives… the conversation typically turns into blaming women for being embarrassed, when the real issue for me is NOT having a choice and being ‘forced’ to submit to exams that I may NOT deem unnecessary. I want basic human rights over my body in medical situations without all the pressure that women typically experience. Women should not have to experience an adverse environment and the bullying strategies while accessing basic healthcare. I am now looking for a naturopathic doctor (NP) in hopes of finding a different and better approach.

Anonymous said...

This article appeared yesterday in the Boston Globe..

http://www.boston.com/bostonglobe/editorial_opinion/editorials/articles/2010/08/24/curb_unnecessary_pap_tests/

Anonymous said...

Another piece that may be of interest to those of us posting on the Women's Privacy Concerns forum...

http://www.hipmama.com/node/44495

Elizabeth said...

Papscreen in Australia are ramping up the pressure for young women to have smear tests. The numbers are dropping and in Victoria fewer than 50% now screen...
Now this program is dangerously out of step with the rest of the world. We over-screen and screen young women despite the clear evidence of harm for no benefit.
Instead of addressing the concerns of women they start another scare campaign highlighting two rare cases.
A 21 year old - an incredibly rare case (and her smear was normal 6 mths before diagnosis, never mentioned of course) and a 34 year old who died 3-4 mths after diagnosis.
The latter case sounds like an aggressive cancer possibly an adenocarcinoma so there is no guarantee screening would have helped her anyway, we know these very rare cancers are usually missed by screening. We also have no idea of her personal level of risk. One size does not fit all.
My point: it's disrespectful to women to keep making scare campaigns when women are concerned about the serious amount of over-treatment.
More women are turning away from the Australian program to protect their health.
This group is only concerned about coverage....not women's health.
I believe they have a responsibility to the vast majority of women who'll never get cervical cancer.
Anyway their scary story got major coverage last night on the News across most channels.
Many have been calling for change for a decade and nothing has been done.
They also mention that older women were more accepting of smears when they were young - absolute rubbish and they know it - they were the days when women were coerced into testing and doctors refused the Pill until women screened...that highly unethical practice stopped a while ago now.
Once again we get dishonesty from Papscreen.
Rather than stop and reassess, they keep harming women.

Anonymous said...

Elizabeth, I feel that we Americans receive much of the same scaremongering as you Aussie women do from your Papscreen authority. I have been reading this forum on women's medical privacy for a long time now and have posted from time to time.

The same thoughts enter my mind whenever I read others' comments on here. Perhaps I am the only one who feels this way, but it seems we women especially are being kept in a constant state of fear, dread and anxiety over our health, screening and certain diseases. It's as though we are to be considered walking time-bombs and can never enjoy a moment's peace, but always live in dread of certain things. I believe the expression used for that is "worried well." It angers and saddens me, not to mention scares the hell out of me sometimes. How in the world can all of that fear, stress, anxiety and worry be good for our emotional and physical health?

I've mentioned before that at my first visit with my current GP a couple of years ago -- for a sinus/upper respiratory bug -- the nurse practitioner was quick to bring up mammograms and the so-called "well woman" exams. She was taking down my family health history and I said my grandmother had been diagnosed with breast cancer at age 79. This of course was more likely, as Grandmother was an older woman, and also was probably due to the fact that she had been on HRT nonstop since having a hysterectomy (for a benign issue) in her 40s. Grandmother, now 87, underwent a mastectomy, takes a daily dose of Arimidex and has been fine ever since. The NP suggested that I start getting mammograms at 35 because of Grandmother having been diagnosed at 79. Um, excuse me, but did I miss something there???

Never mind the fact that Grandmother also had bypass surgery at 73 after going to the hospital with chest pains. She had been misdiagnosed previously despite having cholesterol issues and so forth. My paternal grandfather also died of a heart attack. He was a smoker, was heavy most of his life and probably did not eat as well as many of us do today, which likely contributed to his death, but still. I would think those would be two red flags in my family history, but what do I know?

My Dr's NP made no mention of cardiovascular health, checking cholesterol or anything like that, but she sure was quick to zero in on the two other things. It seems the focus always goes to two areas of our bodies and we can just forget about everything else. I just want to know why that is. Why is it that when 5 to 10 times as many (depending on which stats you read) women die of some form of cardiovascular disease as breast cancer, yet many of us never hear anything about that from our healthcare professionals?

Anonymous said...

Also, I have mentioned before that my mother died of glioblastoma multiforme, the most common and most aggressive form of brain cancer. It's about the worst kind of cancer anyone can get and the treatment options are very, very limited. Most folks with that diagnosis will survive no longer than a year at best. The number of people diagnosed with GBM is roughly equal to that of those diagnosed with cervical cancer, yet there is no aggressive push to get people regularly screened for GBM. It is, according to the experts who treated my mother, an exceedingly rare disease. Her being diagnosed with GBM was, as one Dr. put it, just a case of extremely bad luck. I believe one of them said screening would not make sense, as any one person's risk -- save for a handful with rare genetic syndromes -- would be so low.

So why is it then, that a disease that is just as rare, is the focus of so much attention? Why are so many women pressured, shamed, bullied and frightened year after year into all of this painful and invasive testing for something so rare?

Anonymous said...

The answer would probably be that's it's POSSIBLE the test will pick up the few lesions that would progress to cancer and they claim screening has reduced the death rate for this cancer.
BUT, women clearly don't like the test, I don't agree it's acceptable to most women, the over-diagnosis makes it unethical (even with informed consent) and the cancer is rare so it's impossible to justify the harm.
It might be a public health objective to reduce the death rate, but there are bigger problems under resourced that would save more lives.
Also, more emphasis on prevention would help and a reminder for women to act promptly if they develop pelvic pain and unusual bleeding...treatments are better so these women would probably be saved anyway.
I also don't consider the damage done to women from false positives to be minor, my sister had a conization last year and it was the worst experience of her life, she even needed counselling. It turned out to be a false positive and I've been looking for answers ever since. There was a lot of information she should have been given before she was tested and women really are not given a choice about this test which is very wrong indeed.
My sister won't test again.
Charles

Joel Sherman said...

Here's an article from Australia documenting that the Pap smear rate in young women is falling there. Unfortunately the main reason given for this is not that the women realize that screening is not indicated at their age. More consistent with the overall theme of this blog, the main reason is that the women are embarrassed by the procedure. I guess sometimes embarrassment and modesty are truly beneficial to your health.

Elizabeth said...

Dr Sherman, I doubt they'd say that even if they feared that might be the case. The usual reasons for women "failing" to screen (the arrogance of these people) are embarrassment, ignorance or women being chaotic and busy.
In fact lots of educated women are now moving away from the Australian program and some are tailoring screening to suit their risk profile, deferring testing until they're 25 or 30 or skipping them altogether. A colleague found this site and discovered for the first time that as she and her husband were virgins when they met her risk from this cancer is near zero, but the risks of testing very high. She's furious that she was pressured into screening and had a negative biopsy last year.

I think this forum and blogcritics has really helped spread the word...I see references and quotes from this site appearing all over the place. A young woman in my office even quoted Dr Raffles famous statistic to me recently. Previously when women went looking for answers, there was very little, now at least the information is out there and women can decide for themselves. Some people seem horrified at the very suggestion, THAT I will never understand.

Joel Sherman said...

Anon posted this on Aug 25:
My Dr's NP made no mention of cardiovascular health, checking cholesterol or anything like that, but she sure was quick to zero in on the two other things. It seems the focus always goes to two areas of our bodies and we can just forget about everything else. I just want to know why that is. Why is it that when 5 to 10 times as many (depending on which stats you read) women die of some form of cardiovascular disease as breast cancer, yet many of us never hear anything about that from our healthcare professionals?

As a cardiologist, I must amplify that thought. Cardiovascular disease kills immensely more women than cervical cancer. There's no comparison. Any provider and patient who ignore cardiovascular risk factor to focus entirely on women's issues is doing the patient a great disservice. I agree with Anon's post that she was probably not at high risk of breast cancer, tho genetic testing could be done, but I think it behooves all women to follow guidelines on breast cancer screening as it is such a common disease.

Anonymous said...

Personally I'm going to skip breast cancer screeing as well. The only case of breast cancer in my family was my great grandmother in her 80's; she ended up dying of a heart attack. There is a strong history of heart problems on both sides of my family and I'm more worried about that.

It also scares me that there is confusion over what is breast cancer - the whole are DCISs cancer or not. I also don't like using radiation to diagnose cancer; seems counter productive to me. I will refuse screening unless I have symptoms or problems.

Joel Sherman said...

Here's an article exploring the poorly emphasized risks of Gardasil vaccinations. The article should give one pause and it doesn't even mention the clearly increased risk of cancer when the vaccine is given to girls who have been previously exposed to the dangerous HPV strains.

Anonymous said...

Dr, Papscreen in Australia are spending $450,000 on an ad to get young women to screen, the lowest number of women in a decade screened last year.

My reading from this site and elsewhere says very clearly that young women risk their health for no benefit having screening.
Papscreen have used a 21 year old woman in the launch of their ad. (& 34 year old) Very rare cases.
All very sad, but unethical in my opinion because it's another way to get around informed consent and serves to mislead us.

We don't know that screening would have helped either of them (it didn't help the 21 year old) and what about their risk factors?
Using the very young woman angers me, this will scare teenagers and young women into testing when the evidence is very clear and has been for ages, harm for no benefit. I even found a old medical journal article dated 1999.
The fact they left out of the presentation was that the 21 year old woman had a normal pap smear 6 months before she was diagnosed - I guess symptoms took her back to the Dr. The pap may have delayed her seeing a Dr, yet that fact is omitted. The pap smear did not help her anyway.

It's a tragedy, but how could Papscreen use this woman to harm many young women - they KNOW screening is a bad idea in young women - it misses the rare cases and harms huge numbers. How can these shameless people be forced to stop giving women dangerous and harmful advice?

Foreign doctors are shocked at our program - I was warned about it by an English Dr last year.

These dishonest promotions cause huge damage.
I have no respect for these people, they might as well walk up and harm young women, that's exactly what they're doing...making out they are concerned about our health and then using scare tactics to get us to do something they know will harm us.

How is this allowed to go on and to spend our taxes harming women? I pray some of these women sue Papscreen after they've been harmed with unnecessary procedures, Papscreen know the facts and are actively encouraging, recruiting and scaring women to do what will harm them and not help them. The negligence is clear and shocking.

Concentrating on numbers and ignoring clear evidence of harm is inexcusable. I hope this group are disbanded, they don't try to educate, protect or advise women, they're on some mad crusade to destroy the healthy cervix and then crow about their successful program because they saved one more woman. (which is usually spin anyway, we know other factors have contributed to the fall, not just screening)
Sienna

Anonymous said...

http://www.smh.com.au/national/start-pap-tests-later-say-doctors-20091120-iqyo.html

Dr, this is a recent article on topic.
Why would you spend half a million dollars actively recruiting young women when you say a change in policy to exclude those women is about to be announced?
You might do nothing, but to actually go out of your way to harm as many as possible before the change is made amazes me.
What is going on?
Sienna

Joel Sherman said...

Sienna, I don't know much about Australia. Is Papscreen a government program? But I agree that all the evidence bears witness to the conclusion that screening young women does far more harm than good. Makes no sense to be pushing in both directions at once. I do believe that doing LEEPS, cones etc on young women with grade 2 or less Pap smears could be the basis for litigation. Maybe it could be justified for persistent grade 3 changes.

Anonymous said...

Yes, they are the government owned authority that are armed with the task of getting at least 80% of women to screen. They have never informed women, they simply promote testing. Our doctors are paid to hit screening targets and get bonuses for screening unscreened and under-screened women. Most women don't know about these payments - they're kept very quiet.
Their website also encourages doctors to screen opportunistically, ambush women in unrelated consults and lists a number of responses Dr's can use when women provide a reason or excuse as to why they don't wish to screen, basically trampling over informed consent and out rights.

I consider Papscreen anti-woman - they don't care about our health and rights, just getting to a target and claiming the program a success because the death rate fell again (and who knows why it fell, but they always say it's the work of screening)...never any mention of the downsides of this program.
This group has money and power and the damage they do is awful.
The "information" they release is always misleading and designed to get women to screen by promoting it as the sensible and mature thing to do, by using scare or guilt tactics or putting out lies.
Reading through their site a year ago I had to stop, lie after lie or carefully manipulated versions of the truth.
It must be against the law for a "health" organisation to deceive women into screening.
Saving one woman is pretty hollow when you look at the widespread harm to healthy women.

Sienna

Anonymous said...

I know this has been discussed here before but
I just received my new health insurance rules, and my premiums will go up 1000.00 a year if I do not agree to an annual pap and mamagram. Further I have to agree to discuss the results with a perfect stranger (3 visits a year to a wellness person) who will have access to all of my personal info. The wellness person is a woman, and my husband has to agree to talk about his dr. visit results too.
How is it legal to force us to tell this mandated person our private health discussions with our Dr.s who we trust and know?
I opted out but my husband didn't and we are in the middle of the biggest arguement of our married lives.

Joel Sherman said...

Anon, I don't remember this topic coming up before here. I take it you live in the US? Never heard of similar insurance mandates. Is this insurance mandated by your employers? Whether it's legal would depend on your own state's laws, but it certainly is unusual. Does your insurance pay for all these mandated tests and visits? Most insurance companies would be very reluctant to mandate anything that would give them higher immediate costs. If feasible, changing insurances would be the best bet.
Please give more details.

Anonymous said...

Is the insurance company prepared to accept full responsibility for any harm coming your way in light of risk information for mammograms generally and even higher risks for women under 50?
What about the risk of false positives with pap tests?
How can this be permitted when both tests are voluntary and require your informed consent?
I'd challenge the insurance company and speak to a lawyer.
The only reason they try this sort of thing is because many people allow them to get away with it.

Beth

Anonymous said...

The insurance company could mandate breast exams and pap smears or pay a higher premium. That would be legal but I have never seen a policy mandate that.

Who is the wellness person? What are their qualifications? Is it someone from the insurance company or from the employer? An employer shouldn't even have access to those records. I don't know any insurance company that sends a wellness person to talk to people 3 times a year. With a big insurance company that would mean hiring hundreds if not thousands more people and it just wouldn't be done. The costs associated with that would be through the roof.

Can you tell us more about your insurance company?

Anonymous said...

http://www.smh.com.au/national/start-pap-tests-later-say-doctors-20091120-iqyo.html

I'm confused...I've heard the Australian policy on cervical smears is out of date with evidence from overseas and that's why lots of our women get abnormal results and have treatment - apparently this is caused by false positives.
This article tells us that screening causes more harm than good under 25, but I saw on TV they want young women to keep testing. Even this article says if you had sex at 15 then you should start at 17. I sent an email to a surgery in Amsterdam and they said no woman should have testing before 30. (the only exceptions might be HIV positive women or the daughters of women who took DES (?) a drug now linked to cervical cancer. (used in the 60's to prevent miscarriage or for infertility, I think)

How can medical advice be totally different?
Also, how can that article in an Australian newspaper say one thing and our doctors tell us something else?
I've noticed young women get abnormal results and many end up at outpatients at the women's hospital, it scares me to death. I don't want to join their ranks.
My BF and I have only had sex with each other and I don't smoke. I take the Pill and he uses condoms to be sure, we don't want any accidents. I don't have any major risk factors but when I get my repeat for the Pill, the Dr pressures me. It makes me uncomfortable, but my concerns give me the strength to refuse....I want to be sure I'm doing the right thing, but boy it's hard to get unbiased information and advice, all our doctors seems to push the same thing and I know that advice is not the advice I got from the Clinic in Amsterdam or from the newspaper article.
We really should be told the truth, why should we all have to embark on a witch hunt to find the real story?
Our doctors want to test everyone and don't want to talk about the benefits and risks.
Kara

Joel Sherman said...

I have copied this from the Chaperones Part 2 thread as some of you may have better advice to offer than I do:

Sue said...

Hi,

My wife recently had an appointment with a new doctor to renew her birth control pill prescription. She is 30 has been on the same pill for the last 10 years, all that usually happens is her blood pressure is checked and she is given a 6 month supply.

We have recently moved here and have no established relationship with any doctors or health care providers; I accompanied her to this appointment at her request as she did not know the doctor and my company medical insurance would be paying any costs.

At the appointment in his consulting room he confirmed that he could renew my wife’s birth control prescription but that first he needed to conduct a physical examination, he then asked me to leave the room. I started to get up to leave but my wife said she was happy to have an examination but wished me to stay, the doctor said that this was not “allowed”.

My wife insisted that I stay, she did not know the doctor, who was an older man and my staying would she said help her relax and make the examination, if it was really necessary, as stress free as possible.

Let me say at this point that I was happy to stay or go and wait outside as she wished I had no preference other than her wishes.

The doctor however refused to allow me to stay, my wife argued a little with him and repeatedly said that surly it was her choice if she wished to have her husband present for the examination, we both left with out her having the examination or getting the prescription for her Birth control pills.

My wife went straight to the reception/administrator to complain about the way she had been treated, to our amazement instead of getting an apology we were told that is entirely up to the doctor who he “ allows” to be present during any examination.

The administrator then did offer to arrange another appointment the following week for my wife with a female doctor, my wife agreed but said that she still whished me to be present for any examination if one was required ( I think by this stage it had become a pint of principle) to our surprise my wife was told again that this would be completely up to the doctor but the administrator though that is would not be allowed and was against the “rules”..

At this point we left, angry, frustrated and upset, my wife had still not been able to refill her birth control pill prescription which had been the whole point of the visit in the first place.

My wife has subsequently contacted a couple of other doctors, explained that she wants top refill her Birth control prescription to protect against an unwanted pregnancy, they both said she has to come in for a consultation, which she is happy to do but both have refused to confirm to her that she will be “allowed” to have her husband present if any examination is required. Apparently is depends on the “policy” of Dr X or the “Rules” of Dr Y.

We have had very little dealing with the medical profession as we are both fit, health and active in our early 30’s but I have to admit my wife’s recent experience has been frightening.

Surely she is correct that it is HER choice who she does or does not want to have present for any physical or personal examination. It is not up to what the Dr “allows” or not or what his “ policy” is ?

If my wife or any patient wants to have their husband present during an examination, surely that is the patients right and doctors should respect that, not completely ignore it.?

As I said I have no strong person view with this other than wanting to respect the wishes and preference of my wife, I would be happy to accompany her or not, to wait inside or out as she wishes but surely it is her right to make that decision.

I would welcome any medical / legal comments or opinions on this.

Thanks

James
September 17, 2010 12:23 AM

Anonymous said...

Men who abuse their partners often like to try and control exactly what they do, who they see etc (and I hasten to add I don't think that's why you're doing this!). But this I think is why this kind of policy is in place in many practices, as it allows the doctor to talk privately with the woman without any coercive behaviour from the husband, and this is also why they tend not to discuss upfront why they have this "policy" (to avoid confrontation with the husband as well). I think there are two ways you can get round this; either she takes a female relative/friend instead (they don't generally have an issue with this), or you could step outside during the pill prescription bit, to allow the doctor to have that private discussion, but ask to be allowed to join her for any physical examinations.

I'm sorry by the way that they turned your partner away without the pill; a physical exam isn't necessary for prescription of oral contraceptives (just weight and blood pressure check) and I really think any policy of linking the two is just asking for unplanned pregancies to happen. And for any physical exam the doctor should be able to tell you upfront what it is they're examining you for in the first place (hopefully not just rummaging around for the heck of it!).

Hope you find a more helpful doctor next time.

Anonymous said...

James You might like to ask a man called Rob over on this blog
http://blogcritics.org/culture/article/unnecessary-pap-smears/comments-page-35/#comments
He has the same problem about accompanying his wife and he cannot get an answer.
Look at his posts on page 35.
I think that they are afraid of any accusations and if you are there it would be "two against one". They would prefer their own chaperone if there's a there's a third person in the room so the patient is outnumbered. It surely is ridiculous how paranoid some doctors are.
Nic

Anonymous said...

I'm a female urologist and have had countless spouses, mothers, fathers, siblings, etc. in the room during an examination. If it makes my patient feel more comfortable I am more than happy to accomodate them. I wouldn't even think of saying no.

I do think they might fear a control issue here as someone mentioned above. I would make and appointment and speak to the doctor alone and clothed. This could allow them to be sure you are okay and that the request is coming completely due to your feelings on the matter. Frankly, I feel that is even overkill but it could establish a relationship with your doctor and let them know there will be no exam without your spouse present.

Gyn exams are exams that are often done with a spouse, parent, etc. there for support. I have gone in with friends in the past. Many OB appointments also have a spouse, FOB, etc. in room. This isn't at all uncommon. Your body and your choice.

You could make an appointment at another office and when called just have hubby walk back with you to the exam room. I wouldn't even put them on alert and just do it. Don't give in to the pressure. Do what is best for you. And I would ask why they are so umcomfortable having your spouse in the room. Put it back on them.

Anonymous said...

James, these exams are completely unnecessary for birth control. We all need to stop agreeing to these unethical and coercive demands.
The only thing required for pills is a check of your medical history and a blood pressure test.
It is a breach of the Patient Bill of Rights to demand these exams in exchange for pills.
Caren over at Blogcritics and unnecessary pap smears challenged the system and won.
I'd be very concerned about a doctor having an issue with a husband being present for an invasive exam BUT it's unnecessary for your wife to submit to these exams. (and they risk her health)
Pap tests are voluntary and the Dr should be obtaining her informed consent. That has always been ignored because we let them get away with abusing our rights, we need to put a stop to it once and for all.
I'd ask the surgery to identify the law or regulation that requires these exams and ask them to confirm that a script will not be provided without the exams. If necessary, see a lawyer, but I doubt it'll come to that....once challenged head on by an informed woman, they tend to cave in...
If your wife wants the exam for some reason, I'd take my complaint further, it's outrageous her request to have you present is being denied.
I know more women are fighting back or getting their pills online or in Mexico. One of the posters (Torrance) over at blogcritics has provided the names of a couple of reliable on line pharmacies who don't require scripts for pills, she's been using them for many years.
Isn't it shameful that women should be reduced to those efforts just to protect themselves from harm and protect their legal rights?
Ruth

Anonymous said...

http://blogcritics.org/culture/article/unnecessary-pap-smears/comments-page-36/#comments

Comment 1736 Torrance mentions the on line pharmacy she has been using for years.
Ruth

Anonymous said...

I use that one too, it's great, fast delivery and exactly the same brand that was pulled by PP when I refused an exam after a year on their HOPE program.
At some PP clinics it is not an option of BC with no exams but BC with deferred exam.
The pressure was very bad.
I'l talk care of myself from now on.
Zena

Anonymous said...

In the age of the internet it seems that patient privacy
does not exits anymore. There is a story here about doctors talking about patients on facebook.
http://www.dailytelegraph.com.au/news/docs-blab-on-facebook/story-e6freuy9-1225929368925

Joel Sherman said...

Many doctors have been accused of blogging inappropriately, giving anonymous patient information in sufficient detail that an individual could be potentially identified. Posting identified information is clearly illegal (US), but any detailed information is ethically suspect. An example mentioned on this blog is the female urologist known by the pseudonym Keagirl who has blogged about many patient encounters in varying degrees of detail. Here's one example; there are many others if you go thru her blog which is now inactive.

Anonymous said...

Dr, women are still having hysterectomies because they can't get rid of dysplasia and keep getting abnormal paps, to get off the merry-go-round they opt for surgery.
How can doctors recommend hysterectomies for dysplasia, surely anything short of invasive cancer is professional misconduct.
You hear these women saying they can then relax about cancer. None of these women know the test is inaccurate or that false positives and dysplasia are common because no one has ever told them that, in fact, their doctors behave like the world is falling in, like these women will get cancer and the surgery is a good idea.
How can we get the message out to these women that they're not being well advised? Although I fear few women are able to get balanced and honest advice in this area...if you tell lies for long enough, in the end you can convince yourself they're true or you can't come out and tell the truth after causing harm to lots of women....I think this might be why all of this keeps happening.
On hystersisters there is post after post of women with abnormal paps getting ready to have hysterectomies, they're scared to death of this cancer which they think is very common or they're sick of having treatments and biopsies after multiple abnormal paps.
I feel desperate for these women, how can we help them?
If another woman tries to tell them the truth, they get angry...they absolutely believe their doctors who are doing the wrong thing by them.
How do some doctors sleep at night, turning this many lives into living hell when there is nothing to worry about - dysplasia is not cancer.
Bree

Joel Sherman said...

I agree with you Bree, the problem of unnecessary hysterectomies for dysplasia remains. I don't know if the incidence is decreasing as one would hope, but it certainly needs more publicity. In the US, it should come from the ACOG.
Anyone have any good references concerning the extent of the problem?

Anonymous said...

Beth I think that as new treatments have been developed for conditions that previously required a hysterectomy, doctors are now using abnormal paps as a way to make up for the shortfall. Gynecologists are not going to give up that lucrative part of their job so easily.
Nic

Anonymous said...

The difficult and frightening thing is getting the word out to women when censorship is used against negative but factual posts.
I've tried posting to some of the sites that women view when they're after information about screening, but sadly they're the last places where you'd find critical or factual information.
I've tried posting, but they're deleted and the thread closed - these are government funded sites mainly.
I cannot understand how this is permitted to go on, why there is not one person in a position of power to call a halt to the lies and demand respect for informed consent. When you have governments and doctors in bed together, secret payments being made and and everyone monitoring the information going to women, it's very hard to help these poor women.
This is the greatest abuse of women's rights, health and bodies and the violating nature of these exams and treatments makes it even more appalling.
I know one other site where women are sharing critical information is being monitored by pro-screening groups, no doubt this one is as well.
The injustice really hurts...watching so many women suffer.
I thank God I have a questioning mind and made a point of making my own decision about this testing and standing firm, often very difficult. I feel like I missed a huge bullet.
Beth

Anonymous said...

http://www.wdxcyber.com/ncanc11.htm

This article tells women that severe dysplasia is often called carcinoma in situ.
My understanding is that dysplasia is not cancer...and should never be treated with a hysterectomy.
Also, the percentages and figures used in this article are in my opinion, way out....
These sorts of articles do lots of damage, anyone ready that and getting an abnormal pap test showing dysplasia would be scared to death.
This is a very serious problem.
Dr Raffle says in one of her articles that dysplasia is so common it must be a normal part of the body's healing process. Perfectly normal at certain stages of life...she says things like....at least half of all women will be captured by a pap smear during a phase of dysplasia. (not a direct quote, from memory)
We know with annual and biannual testing, the test captures even more women - 95% with annual and 77%-78% with 2 yearly testing.
Ruth

Joel Sherman said...

Ruth, once again I am not an expert on this. But high grade changes in the cervix should be taken seriously. How seriously depends on your age; the younger the less meaning it has. Persistent high grade changes are a cause for concern; according to the article near 50% can progress to outright invasive cancer.
I agree that using the term cancer in situ may be misleading, but the diagnosis should not be ignored except probably in young women where the test should not be done to begin with.

Anonymous said...

http://www.medhelp.org/posts/Menopause/
Abnormal-pap-15-years-after-hysterectomy/show/280554

Dr, why wouldn't this Dr ask why she's still having pap tests many years after a complete hysterectomy for endometriosis?
This woman should not be having pap tests, yet he leaves this huge fact alone and talks about further investigation.
Are these doctors incompetent or dishonest?
Sometimes it feels like a huge conspiracy and doctors are laughing at us for being trusting and very dumb.
Prue N

Joel Sherman said...

Sorry Prue, I'm not competent to fully answer your question. Routine Paps aren't recommended after a hysterectomy, but this lady doesn't say why she had further Paps. Maybe she was symptomatic with a discharge, in which case further investigation would be appropriate. Vaginal changes can occur. I don't know the likelihood of cancer developing though it is probably small.

Hexanchus said...

Joel,

I took a gander at the CDC & ACS sites. Depending on which numbers you look at, the estimated occurrence for vaginal cancer in the US is between 2500 & 3500 new cases per year with the estimated number of deaths of 732 per year. It's roughly five times more rare than cervical cancer.

Elizabeth said...

I feel that common sense has been lost with hot pursuit of "established" public health objectives with no regard for the health and rights of the majority of women. Many doctors just accept that breast and cervical screening are "must-have" tests and even admonish women who hesitate or refuse.
In the UK women are actively pursued or "chased" as GP's have been advised to do...some of the advice given to GP's makes my blood boil...."chase first time screeners and try to establish testing as a habit like brushing your teeth"...that sort of thing.

The lack of respect for informed consent is shocking...women are fighting back and there is definitely more critical discussion, but for most women, it's business as usual at the surgery.
Dr's assume we test, demand we test, try to scare and mislead women...it will take years to change this well-established paternalistic and unethical thinking. (particularly with doctors receiving financial incentives to reach screening targets)

As far as over-treatment and hysterectomies are concerned, no one bothered counting for decades...Angela Raffle's research in the BMJ was the first really clear evidence of over-treatment to hit the media and reach women.

If you dig into medical journals, you find excess cone biopsy rates, from memory it's something like more than 50 unnecessary for every one that's necessary.

Hysterectomies - most of that is hidden or explained away. I'm sure doctors would fear legal action if that information got out...there is no doubt at all that in the early days of this screening there were many unnecessary hysterectomies because doctors wrongly assumed that an abnormal pap smear would go onto cancer. I've seen early articles praising the pap smear and quoting hysterectomy rates as proof the test is working and saving lives - most now understand almost all of those surgeries were unnecessary. (except the poor women involved)
That's why you don't introduce unproven screening tests.

Over-treatment is still a major issue, but there has been some relief in the UK and Australia with more conservative management of abnormal pap smears. I would guess it's still an issue in the States - you only have to look at sites like Obgyn.net and hystersisters to see it's still happening. I think many women are left in the dark after the surgery with talk of dysplasia and CIN, few women understand the difference between pre-cancer and cancer.
Personally I believe little effort has been made to clear up this confusion, it conceals a lot of serious over-treatment.
I'll see what I can find though...

Anonymous said...

Can someone tell me, is it actually illegal for a doctor to refuse you a script for BCP's when you refuse a pap test? I've had 2 painful and humiliating biopsies that showed nothing but normal tissue, even though the paps were very abnormal...I don't want any more and have no faith in this test.
My doctor and 2 others have refused me BC until I do "the right thing" was one expression.
I don't know my rights, but won't have more testing, it's out of the question.
Could anyone give me some evidence I can put to the doctors that says they can't refuse me BC?
We're using condoms at the moment, but I'm worried about their reliability, they have slipped off in the past. My local PP requires the works to get BC.
I don't have the money for lawyers.
Thank you
Jane

Joel Sherman said...

Jane, it is not illegal in the US for a doctor to refuse to treat you. If PP is of no help, the only alternative I can think of is to arm yourself with copies of some of the references you'll find here and bring them into your doctor or find another doctor. I'm sure some of the women here have further suggestions. Good luck.

Anonymous said...

I would look for a doctor who will agree to work with you and bring references to back you up. This is an awesome article:

http://www.law.harvard.edu/students/orgs/jlg/vol27/dixon.pdf

Anonymous said...

http://www.managingcontraception.com/qa/
questions.php?questionid=635

This may help you, perhaps, you need to see a few doctors and find one with an open mind. Or, even better, contact this Dr who sounds like he'd be prepared to speak to your dr about the matter. It's a shame no real action is taken to break down the barriers preventing access to BC. It's crazy to risk pregnancy and the need for abortions to force testing for a rare cancer and exams that are not even recommended in many countries.
Also, we test too early and too often and it would be sensible for women to refuse early and too frequent testing - all women should have that option.
Women's health seems very coercive and paternalistic.
I get Viagra OTC - a bit of a double standard at play here.
Michael

Phil M said...

Dr, why don't American medical groups endorse evidence based recommendations?
My wife and I returned from Europe recently, we moved there to care for her mother during her last years. None of these gyn exams that women are really pressured to have here are done there. Several doctors told my wife they wouldn't do them for fear of harming her, she'd have to find another doctor if she wanted that sort of exam. No Dr would do it, all saying it was harmful unless she had symptoms.
My wife has been told to have yearly cervical screening as well, since she was young. One of their Dr's told her every 5 years, another told her she was very low risk and to forget about it!
My wife was worried at the start, but is now warming to the idea of skipping them altogether.
My wife is interested to know why attitudes are very different here, women in the netherlands don't have these well-woman exams and only have pap tests every 5 years, if at all and some use self-sampling swabs.
Our doctors are so far the other way it's incredible.
Who is giving women the best advice? The dutch women looked perfectly healthy and their cancer rates are lower than our rates.
I'd be interested to hear your comments.
Phil M

Joel Sherman said...

Phil, I can only speculate. Evidence based medicine is applied to other fields but only reluctantly to this area of gynecology. Pap smears were maybe the first test to prove successful in fighting cancer, and it gained a big following. But we know so much more about the disease nowadays that the recommendations need to be modified. They have been, but many practitioners don't follow them.
Add that to the fact that the US is perhaps the only country where it is recommended that women see gynecologists yearly and we have a large oversupply of gynecologists relative to need if they restricted themselves to gynecologic surgery. Our liability system and fee for service system both add to physicians' likelihood of doing well woman exams and Paps.
We also have a very strong feminist movement which stands strongly behind all women's health initiatives. There is a political risk in espousing reductions of any health services for women. We have seen this backlash in the past year with new mammography and Pap smears recommendations.

Ann said...

Isn't it strange that feminists keep the excess going which has resulted in a poorer quality of life for many women?
It prevents access to reliable birth control, makes doctors powerful figures over women, controls us, demeans us with stirrups and very invasive and unnecessary exams that may even be harmful.
I find feminists are part of the new oppression of women.
All of this makes being female a medical, powerless and undignified thing.
1 in 3 women will also have a hysterectomy by age 60.
Just awful...it scares me to death.
I don't have any medical care and in that way avoid this sort of dysfunctional life.
I'm a lot healthier than my friends leading their medically controlled lives.
Ann

MarĂ­a said...

You're right Ann, feminists have made life harder, not easier or happier for us. They protect us very well from our husbands when they really mistreat or humilliate us, but for some reasons, it never occured to them to protect form our doctors, no matter how badly they behave.
There is a lot of misguided feminism out there, all it did is restricting men's freedoms without improving women's in any way, in fact it is these women that treat us as children (that "all sex is rape" thing) and foolishly believe that "your doctor will always know better" crap. To make things worse, they have this "more is better" approach, but oftentimes things just don't work like that, (especially in women's healthcare), or worse they associate it with rationing, that's why there is a huge outcry at the very mention of any of these services being cut back or being used less frequently.

Veronica said...

My mom had a hysterectomy including her cervix in 2002 after heavy periods during menopause.
The cyology was clear and normal. Her Dr has continued with pap testing and says given she still needs pelvic exams, she might as well have the pap test as well.
She had an abnormal pap last month and is confused more than scared.
The Dr has said it could be cancer of the vaginal cuff area. My reading says that's very rare.
Apparently they'll do a colposcopy and some punch biopsies, but my mom is thinking of canceling the whole business and stopping well woman exams, she thinks they probably cause more trouble than they're worth. I've found a few articles that say mom should have stopped testing after her op, but other health sites are less clear.
It really is bad that women are put through all of this their entire lives.
I've decided not to start these exams - doctors get angry if we ask questions about the tests and exams, why, if there are sound reasons for the exam?
Most women who have had hysterectomies are still having pap tests even though they're "ineligible" according to many foreign articles.
We need to be proactive about these exams and refuse them if we're not satisfied.

Hexanchus said...

OK, color me confused!

Veronica,

Considering that absent any symptoms, the only purpose of a pelvic exam is to assess the condition of the uterus & ovaries, why on earth would she still need pelvic exams after having a hysterectomy?

Veronica said...

I don't know, Hexanchus...Mom was told the pelvic is for the entire pelvic area and not just gyn purposes. I guess that means the bowel.
It appears most women who fall into my mom's category are still having the well-woman exam.
I guess if it's totally pointless the Dr still gets paid, call me cynical!
Does anyone know whether a pelvic is helpful at all after a full hysterectomy? Is it helpful finding bowel cancer for example...?
It's almost like doctors just do everything whether it's necessary or helpful. We're not viewed individually.

Veronica said...

Hexanchus,
I found this, and a few others recommending annual pelvic exams in women after full hysterectomies for non-cancerous conditions.
http://www.everydayhealth.com/specialists
/women/etingin/qa/pelvic_exam
_hysterectomy/index.aspx

Hexanchus said...

Veronica,

ACOG Issues Recommendations on Routine Pelvic Exam Cervical Cytology S
Apr 25, 2009 ... Asymptomatic women who had total abdominal hysterectomy for benign indications may have no more bimanual pelvic exam and speculum insertion.

There are also several studies out there that basically say that the pelvic exam in asymptomatic women is of little or no value.

Anonymous said...

Veronica why not get the doctor to give the arms and legs a squeeze too to check for a mass? I don't get why gynecologists need to do this yearly checking. Neurosurgeons don't ask people to come in yearly for a brain scan. Podiatrists don't have a yearly foot exam looking for cancer. Obviously some branches of medicine have too much time on their hands.
Nic

Anonymous said...

Thanks for your responses.
Mom has decided to skip the well woman exam from now on and has canceled the colposcopy and biopsies...her Dr has said she's risking her health, but the evidence doesn't support that statement.
It appears we can't trust our doctor's advice in this area. These exams are confronting, it's poor they're being done with cavalier disregard for women's feelings and the consequences.
Mom has had enough...
I think she's made the right decision.
Veronica

Anonymous said...

Veronica, Just getting out of bed risks your health so what the doctor is saying is true. EVERYTHING risks your health. But as for your mother having cancer, that would be so rare I think that it would be far more risky getting hit by a bus on her way to the pelvic exam than skipping the exam.
Nic

Anonymous said...

Nic, I agree that neurosurgeons and podiatrists don't ask us to go in for a yearly exam to check for cancer and I'd guess that skin and brain cancer are more common than most gyn cancers. (excluding breast cancer)
It seems the main obsession for doctors is with gyn health, absolutely obsessed...and that's the one area that would cause the most embarrassment and distress. I don't believe in routine exams that are embarrassing, painful or unnecessary.
It would be easy to check our mouths for instance and that's never done, I've read (probably here) that mouth cancer occurs as often as cervical cancer.
Also, anal cancer is on the rise especially with gay men - it's linked to HPV as well, in many cases. Yet it's a low key thing compared to checking women obsessively for other rare cancers.
There is some off-thinking going on that isn't evidence based, it doesn't even make sense.
Strange more women can't see that.
It IS treating healthy women like diseases waiting to happen, I wonder if it's a carry-over from the thinking of the past when the profession was entirely male and being female was regarded as an unclean, mysterious and unstable thing with menstruation and childbirth.
Tony

Anonymous said...

Tony it absolutely is linked with that. I read somewhere about a male gynecologist who proposed at a conference back in the 70s, I think, that every woman should have a hysterectomy after she's finished having her family. His opinion was that uteruses are bleeding, potential cancer ridden nuisances. And apparently his opinions were quite well received. It's amazing that somebody who is a specialist in that area of the human body has such an overt hatred for it. Even the Lancet back in the 80s believed that women were better off without their uteruses.
Also, I read about a doctor who proposed not doing radical mastectomies on women with breast cancer but lumpectomies because they were just as effective. But his ideas were strongly opposed as doctors were not concerned at all how women were left disfigured. In my opinion gynecology was and to some extent still is dominated by misogynists.

Joel Sherman said...

Well, I can't say I agree with that. I've known many male Ob-Gyns and never heard one say anything misogynistic. I agree that there have been many strange therapies in medicine proposed over the years, and I'm sure that men have been less sensitive to women's concerns than they should be. I expect the opposite is also true, that women are less sensitive to men's concerns. In any event, if Ob-Gyn is 'still dominated by misogynists,' a good half of them are women.

Anonymous said...

Dr Sherman Has a female urologist ever proposed that a man have his penis amputated if he has a problem with it? Or that a man have a prophylactic castration incase in the rare instance he gets testicular cancer? Of course not. She would be in the newspapers and painted as some kind of psychotic man hater. So how can a doctor propose that a woman have a prophylactic oophorectomy or a hysterectomy for a benign condition and not be a misogynist? Either gynecologists are still completely ignorant of the adverse effects of a hysterectomy or an oophorectomy or they are aware of them but they continue to recommend them, which in my opinion makes them misogynists. Because if you like women you would not perform those operations unless the woman had invasive cancer as the adverse effects on a woman's quality of life are too great. We are talking about the same operation that vets give animals. Desexing.
Sure there are women entering the profession now in greater numbers but they have been taught by male doctors and it will still take a while before the female influence will filter through.
Women have absolutely been disrespected by doctors in the past. For example giving birth was a time when doctors thought they could just bring a group of students in without the mother's permission. That was a common occurance. I personally know women this has happened to. And lets also mention the use of stirrups, a practice only done in the U.S. What is the purpose of that if they are not necessary? In my opinion they are a way of humiliating women. Just these two examples shows a complete lack of respect afforded women by doctors in the past and present which has to, in my opinion, have its origins in misogyny. What else could it be? You cannot like and respect women and treat them in that way.
Nic

Joel Sherman said...

I don't think this is useful Nic.
I believe doctors (and nurses) have disrespected both male and female patients. If you don't believe men have had their own problems read the rest of this blog. For instance under the cancer thread, Art Stump was exposed in stirrups while being treated for prostate cancer. During the treatment a high school girl was invited in to watch without his permission.
I oppose all violations like this against both men and women. I have been impressed that most of the complaints on the women's thread have been against the system and not directed against the gender of the doctor. I think that's the proper emphasis. I am also not in favor of the bashing that nurses sometimes receive on the men's threads.

Anonymous said...

I do wonder why it's fine for doctors to hold birth control hostage until women submit to exams our doctors say are harmful unless you have symptoms.
Are men ever denied unrelated drugs until they agree to a rectal exam or to check their testicles?
I don't think they'd get away with it.

I do think paternalistic attitudes still flourish in gynaecology. Women doctors have followed the examples of the men before them and are now just as bad. I know many American women through my sporting interests who are regularly denied reliable contraception until they agree to an array of deeply humiliating exams while they are in stirrups, all unrelated to the Pill and our doctors say, unnecessary unless you have some sort of symptom that calls for those exams. I do think this system makes it easy for doctors to take advantage of young women.
One American girl was thoroughly examined in the most shocking way while her overweight sister got off with a blood pressure test. That's all our doctors say is necessary for the Pill.
I believe the Dr wanted to look at and touch her intimately, use his position to take advantage and your system protects him.
That's evil...it should be rape or sexual assault to coerce a women into these invasive exams when they're unrelated and clinically unnecessary for the Pill.

You have very high rates of unplanned pregnancy and the risks of abortion and pregnancy are higher than cervical cancer by a long margin, yet this is allowed to go on and on.
The American women I know gave up long ago and all get their pills online using foreign pharmacies.
I don't believe this would ever happen to men, but I don't agree with it happening to anyone, I believe all men and women should be treated ethically.
Three girls are receiving counseling after being forced to have these exams, they have been diagnosed with PTSD, they all believe they were sexually assaulted, but there is no recourse as it's legal sexual assault. When doctors can demand any exam, even irrelevant and harmful ones, there is no protection for women.
The lack of action to stop these abuses is nothing sort of criminal. The mental and physical toll is enormous. I hope this excellent forum can do something to end the suffering of women.
Some doctors sympathize with the outrage women feel over this coercion, but the practice continues.
I hope for the sake of all American women that the barriers around birth control are broken down very soon.
Katherine

Anonymous said...

I do wonder why it's fine for doctors to hold birth control hostage until women submit to exams our doctors say are harmful, unless you have symptoms.
Are men ever denied unrelated drugs until they agree to a rectal exam or to check their testicles?
I don't think they'd get away with it.

I do think paternalistic attitudes still flourish in gynaecology. Women doctors have followed the examples of the men before them and are now just as bad. I know many American women through my sporting interests who are regularly denied reliable contraception until they agree to an array of deeply humiliating exams while they are in stirrups, all unrelated to the Pill and our doctors say, unnecessary unless you have some sort of symptom that calls for those exams. I do think this system makes it easy for doctors to take advantage of young women.
One American girl was thoroughly examined in the most shocking way while her overweight sister got off with a blood pressure test. That's all our doctors say is necessary for the Pill.
I believe the Dr wanted to look at and touch her intimately, use his position to take advantage and your system protects him.
That's evil...it should be rape or sexual assault to coerce a women into these invasive exams when they're unrelated and clinically unnecessary for the Pill.

You have very high rates of unplanned pregnancy and the risks of abortion and pregnancy are higher than cervical cancer by a long margin, yet this is allowed to go on and on.
The American women I know gave up long ago and all get their pills online using foreign pharmacies.
I don't believe this would ever happen to men, but I don't agree with it happening to anyone, I believe all men and women should be treated ethically.
Three girls are receiving counseling after being forced to have these exams, they have been diagnosed with PTSD, they all believe they were sexually assaulted, but there is no recourse as it's legal sexual assault. When doctors can demand any exam, even irrelevant and harmful ones, there is no protection for women.
The lack of action to stop these abuses is nothing sort of criminal. The mental and physical toll is enormous. I hope this excellent forum can do something to end the suffering of women.
Some doctors sympathize with the outrage women feel over this coercion, but the practice continues.
I hope for the sake of all American women that the barriers around birth control are broken down very soon.
Dr, your article on Informed consent must have made many doctors feel very uncomfortable.
Thank you.
Katherine

Anonymous said...

Could someone please contact the infamous Dr Orrange over at dailystrength blog about GYNs holding BC hostage until these intrusive exams are performed. It would make a great topic of discussion. I would like to read her opinion on this subject since she cherishes women’s health above all. __Jo__

Joel Sherman said...

I have posted my original article on informed consent for cervical cancer screening from KevinMD.com on my new blog where it will be more accessible.

Yazzmyne said...

I'm happy to see that more people are questioning these pelvic exams / pap smears that are being forced onto women.
Especially in the US it seems that women are the most harrassed about this.

I also find it sickening how this is across the world so accepted. First time I got on the internet I expected to read women speaking out against this violation 'for their own good'. I thought at the least, on the internet people can speak more easily their minds because they can be anonymous, but apparently most people don't even have a mind of their own...
and to my surprise I found hardly any criticism, not even on feminist sites! To the contrary, they seem to believe gynecology is a feminist thing and like most women believe it's a 'necessary evil'. Well in my belief, all evil is UNnecessary, haha!

I only found a few women who attacked some med students on a forum for what they believed was basically legalized medical rape and because of my frustration that so little people admit to this truth, I started a yahoogroup to attract like minded people.

If you want to join, it's at
http://health.groups.yahoo.com/group/womenagainststirrups/

Anonymous said...

I am so thrilled to have found this blog! For the past two years I have had abnormal paps. I have had two colposcopys, the last being a little over a week ago. After having the consult with my Dr yesterday he is suggesting a leep procedure be performed. My abnormalities started with mild displaysia, to my last pap showing HGSIL. However, my colposcopy showed no abnormalities. My Dr. took biopsies from 2 spots on my cervix, and did a cervical canal scraping. I questioned why he thought a leep was necessary, and according to him, he believes the cervical canal is the cause of concern. The way he scraped it, I can't imagine he missed a spot, but apparently he feels he most likely did. I must inform you that I did test positive for HPV and am a smoker. I have been with the same partner for almost 5 years. I'm unsure of what to do at this point. Could all of the previous pap results be false positives? Why would my colposcopy biopsy show no displaysia? Should I consult another physician outside of my clinic and request a new pap and HPV testing. The thought of cervical cancer scares me to no end, and the thought of a leep procedure eradicating the possibility gives me hope. But am I indeed in need of hope?? Any comments would be greatly appreciated!

Joel Sherman said...

Anon, I am not competent to give you a medical opinion on what your best course should be, but it sounds like you are at some risk.
By all means get a second opinion and come prepared with questions.

Elizabeth said...

Dr Sherman,
I posted this to The Doctors show message board in response to their 5 top tests for women. It was immediately deleted from the site even though every word can be backed by medical practice in this country and the UK and from medical journal articles, many linked from this site.
The site calls for comments and then deletes anything that contains facts. I can only assume the Show is designed to scare women or to encourage women to simply comply with their recommendations, regardless of clinical need, informed consent or any sort of evidence base.
My post was as follows:
As an Australian woman I always steel myself before listening to American doctors – their advice always alarms me.

You’ll probably be told an annual routine pelvic exam is important – you might want to check that “fact” – our doctors (and English doctors) do NOT recommend them at any age in asymptomatic woman, in fact, they can be harmful. (more testing, even surgery) Routine PE’s are of low to poor value in the absence of symptoms and expose you to risk.

Ask the Dr for a sound medical reference and check it for yourself…do your own research as well.

Use of stirrups – NOT used in consult situations

Routine rectal exam – NOT recommended in a symptom-free woman, EVER

Routine visual inspections (I understand some of your doctors recommend them) NOT recommended by our doctors

Clinical breast exams – NOT recommended – no evidence they bring down the death rate, but they cause biopsies.

Mammograms have RISKS too, some would say serious risks – go to the Nordic Cochrane Institute website and read, “The risks and benefits of mammograms”. Breast screening has been oversold to women – if you want them, do your reading first and make it an informed decision.

STI testing (if you need it) – all you need is a urine and/or blood test and perhaps a cervical swab (which you can take yourself)

The Pill – the only things clinically required for the Pill – your medical history and a blood pressure test. I understand American doctors hold the Pill “hostage” until women submit to invasive and unnecessary exams and what should be a voluntary cancer screening test. I believe this amounts to coercion – any Dr denying you the Pill until you submit to unrelated and unnecessary exams and tests should be challenged…this is a violation of your rights and body.

See: News coverage of recent American study: http://www.msnbc.msn.com/id/40323407/ns/health-…

(women seeking birth control get unneeded pelvic exams)

Pap tests – a rare cancer and an unreliable test – be careful with this one. Informed consent is a legal and ethical requirement of all cancer screening. American doctors test excessively and inappropriately and that risks your health for no additional benefit. False positives are common and the risk goes way up if you’re under 25 or test more often than 3 or 5 yearly from age 25 or 30. Assess your level of risk for cervical cancer and make up your own mind – if you want the test, adopt a program that protects you (as far as possible) from false positives and potentially harmful over-treatment. (like the Finnish and Dutch program)

Women under 25 do NOT benefit from pap tests, they don’t affect the tiny death rate, but produce LOTS of false positives and many end up receiving harmful OVER-treatment. CC in this age group is incredibly rare. (and is rare/uncommon in all age groups)

To be Continued...

Elizabeth said...

Continued...
STI testing (if you need it) – all you need is a urine and/or blood test and perhaps a cervical swab (which you can take yourself)

The Pill – the only things clinically required for the Pill – your medical history and a blood pressure test. I understand American doctors hold the Pill “hostage” until women submit to invasive and unnecessary exams and what should be a voluntary cancer screening test. I believe this amounts to coercion – any Dr denying you the Pill until you submit to unrelated and unnecessary exams and tests should be challenged…this is a violation of your rights and body.

See: News coverage of recent American study: http://www.msnbc.msn.com/id/40323407/ns/health-…

(women seeking birth control get unneeded pelvic exams)
Pap tests – a rare cancer and an unreliable test – be careful with this one. Informed consent is a legal and ethical requirement of all cancer screening. American doctors test excessively and inappropriately and that risks your health for no additional benefit. False positives are common and the risk goes way up if you’re under 25 or test more often than 3 or 5 yearly from age 25 or 30. Assess your level of risk for cervical cancer and make up your own mind – if you want the test, adopt a program that protects you (as far as possible) from false positives and potentially harmful over-treatment. (like the Finnish and Dutch program)

Women under 25 do NOT benefit from pap tests, they don’t affect the tiny death rate, but produce LOTS of false positives and many end up receiving harmful OVER-treatment. CC in this age group is incredibly rare. (and is rare/uncommon in all age groups)

A high risk woman has a 1% lifetime risk of cervical cancer with no screening at all – low risk, less than 1%….with testing 99% derive no benefit, 0.35% get false negatives and 0.65% are helped….BUT annual screening sends 95% for colposcopy/biopsies in their lifetime and 2 yearly – 78% – almost all are false positives.

Finland has the lowest rates of cc in the world and sends the fewest women for colposcopy/biopsies (fewer false positives but even this program carries a 35%-55% lifetime risk of referral) they offer 5 to 7 tests in total – 5 yearly from 30. The Netherlands have the same program.

The over-use of this test in America is shocking – so many women having unnecessary biopsies/treatment and some women are left with cervical damage that can lead to infertility, miscarriages, high risk pregnancy, more c-sections, premature babies and psych issues.

Hysterectomies – 1 in 3 of you will have one by age 60 – a huge 600,000 are performed every year! Very high rates compared to other countries like the UK and Australia.

Protect yourself from harm – do your own research – your doctor’s advice is probably excessive and not evidence based….

Dr Joel Sherman’s medical privacy forum is a great source of medical references (see articles by Angela Raffle, UK screening expert) and Richard DeMay (American pathologist) – under the section on women’s privacy issues – in the side bar you’ll find the articles.

Dr Raffle’s research published in the BMJ in 2003, “1000 women need regular smears for 35 years to save ONE woman from cervical cancer”…this cancer is rare, always was – don’t overdo pap tests!

As a low risk woman, I made an informed decision over 20 years ago, not to participate in cervical screening. I have recently also declined mammograms. Fortunately our doctors don’t try to sell us the well-woman exam, which is not evidence based and more likely to harm you. It should be called the sick-woman exam.

Be careful with the top 5 tests, are they really in YOUR best interests?
I'm used to censorship, but it still frustrates me, it sometimes feels like a conspiracy to keep women uninformed!

Elizabeth said...

Continued...
STI testing (if you need it) – all you need is a urine and/or blood test and perhaps a cervical swab (which you can take yourself)

The Pill – the only things clinically required for the Pill – your medical history and a blood pressure test. I understand American doctors hold the Pill “hostage” until women submit to invasive and unnecessary exams and what should be a voluntary cancer screening test. I believe this amounts to coercion – any Dr denying you the Pill until you submit to unrelated and unnecessary exams and tests should be challenged…this is a violation of your rights and body.

See: News coverage of recent American study: http://www.msnbc.msn.com/id/40323407/ns/health-…

(women seeking birth control get unneeded pelvic exams)
Pap tests – a rare cancer and an unreliable test – be careful with this one. Informed consent is a legal and ethical requirement of all cancer screening. American doctors test excessively and inappropriately and that risks your health for no additional benefit. False positives are common and the risk goes way up if you’re under 25 or test more often than 3 or 5 yearly from age 25 or 30. Assess your level of risk for cervical cancer and make up your own mind – if you want the test, adopt a program that protects you (as far as possible) from false positives and potentially harmful over-treatment. (like the Finnish and Dutch program)

Women under 25 do NOT benefit from pap tests, they don’t affect the tiny death rate, but produce LOTS of false positives and many end up receiving harmful OVER-treatment. CC in this age group is incredibly rare. (and is rare/uncommon in all age groups)

A high risk woman has a 1% lifetime risk of cervical cancer with no screening at all – low risk, less than 1%….with testing 99% derive no benefit, 0.35% get false negatives and 0.65% are helped….BUT annual screening sends 95% for colposcopy/biopsies in their lifetime and 2 yearly – 78% – almost all are false positives.

Anonymous said...

I agree with Dr. Sherman, Anon. Get a second opinion and f/u on the initial findings of your doctor. You have risk factors involved here so please move forward and have everything looked at with a fresh set of eyes. Best of luck.

Dr. Lisa

Anonymous said...

Anon You say you are scared of getting cervical cancer. I'll put it in perspective for you. I came across and Australian govt report on cervical caner not long ago. In it it stated that the rate of cervical cancer before the introduction of screening was less than 15 per 100,000. So about 1 in 6,666. If you are young the odds are probably even lower.
nic

Joel Sherman said...

Nic, I don't think those odds apply if you have HGSIL and a positive HPV as anon said she had.
Anon, don't ignore what your doctor told you, but by all means get a second opinion.

Anonymous said...

Dr Sherman this report I mentioned stated that Cin2 and cin 3 is relatively common in young women as it usually represents a recent HPV infection but it is highly unlikely that will lead to cervical cancer.
Quote:
"These
estimates are broadly in accord with population statistics, histological HSIL now being
most commonly diagnosed among women aged 25–29 years compared with cancer in an
unscreened population having peak rates in the age range 44–49 years (Gustafsson et al
1997). The duration of occult malignancy has been estimated at around four years
(Gustafsson and Adami 1989).
As the age spectrum of women having cervical cytology has progressively broadened to
include younger women, the peak age for CIN 3 on cytology has declined and the frequency of this diagnosis has increased (Mitchell and Medley 1990). The rates of
diagnosis of histologically confirmed CIN 2 and CIN 3 among screened women are now
vastly in excess of the rate of cervical cancer among unscreened women. The excess is
most apparent in premenopausal women (see Figure 3.2)."
The report is huge if you want to read it here's the link.
http://www.nhmrc.gov.au/_files_nhmrc/file/publications/synopses/wh39.pdf

Matthew Chiglinsky said...

I have a problem with people of either gender being subjugated. I noticed recently that when I came up with the most precise definition of "rape" that I could, it actually fits what many women experience during a pelvic exam:

http://agalltyr.wordpress.com/2010/11/28/a-pelvic-exam-is-rape/

I know this is an unconventional viewpoint, but I tried to make a reasoned argument. I think pelvic exams should be illegal, myself. There must be less invasive alternatives to stay healthy.

Anonymous said...

A pelvic exam is not rape if one consents to it. It can be a useful and necessary examination for many women. All pelvic exams shouldn't be put into one category. There are some that can save lives and be absolutely pertinent to one's health.

Matthew Chiglinsky said...

Anon, the argument I make in my blog post is that it is basically impossible for a woman to consent to a pelvic exam, just as it is impossible for a person to consent when a gun is held to his/her head. What people call "consent" is a delusion, because the real motivation is fear.

Violet to Blue said...

By your own argument then matthew, no woman would be able to consent to any other form of health care, or indeed to sexual intercourse.

And can I say how disappointed I am that having recently returned to this area of discussion, I find the previously excellent, women-focussed discussion over at Blogcritics being derailed by a certain kind of man who seems obsessed with dissuading women from ANY sort of gynaecological healthcare (presumably happy to watch someone die in childbirth though, right?),and have NO MORE RESPECT for our intelligence and ability to make our own medical decisions, than the doctors whose appalling attitude to cervical screening made both that and this discussion necessary in the first place.

Anonymous said...

Of course a woman can consent to a pelvic exam. The same can be said for all medical exams. Woman deserve more credit than you give them. Pelvic exams can be a necessity for many woman. Many woman also want them for a variety of very valid reasons. It is important not to point all pelvic exams with the same brush. That's a dangerous road to go down. Many many women consent to them and that's a choice they deserve to have. The same is true for breast exams. They too can serve as an excellent tool for many women. The goal should never be to take these exams away from all women. That would be a terrible travesty for many. We want to educate women about their own bodies and encourage them to make decisions for themselves that provide them optimal health benefit. The agenda should never be one of fear on either side and I see that here on both sides which is a shame. Scaring people away from a necessary exam is just as bad as scaring someone into one. Both sides and their own agendas are wrong.

Elizabeth said...

A small victory at "The Doctors" site, they allowed one comment to remain that links Dr Sherman's article.
Having viewed a portion of the show, I can see why facts and figures would seriously threaten the program.
We basically have doctors "selling" women tests - many unnecessary and even harmful...
Informing women would definitely derail their agenda.
Dr Lisa also mentions girls should start seeing a gyn yearly from around 13...
She also says cc would be almost wiped out if all women had pap tests, I guess she's never heard of a false negative? One third of women who get cc have had a recent normal pap test or a series of them and some studies say it's up to half of all women who get cc.
Makes me shiver...

Elizabeth said...

Anon, How old are you?
It wouldn't be appropriate for anyone to "tell" you what to do...
All I'd say is be very careful with LEEP. It leaves nothing for pathology and women are then left unsure of their status, did they have a false positive or a real problem?
I'd be asking why my biopsies were normal, I assume by saying they showed no dysplasia, you're inferring they were normal.
I wouldn't be pressured into anything, remember the chance it's a serious problem is less than 1%.
Hexanchus did some number crunching for us and apparently the lifetime risk of cc in an unscreened woman is not 1% as frequently reported, but around 0.65%. So, don't panic...
I'd be doing a lot of reading and asking a lot of questions before taking the next step. You're lucky that Dr Sherman's site has some great articles conveniently linked to the site.
My advice: I'd be asking my Dr why he thinks LEEP is necessary after normal biopsies? Does he always recommend LEEP after all normal biopsies if the woman tests positive for HPV? If not, ask him/her why your case is different?
If yes, why is that the case?
Good luck, Anon

Elizabeth said...

Yes, I was referring to Dr Lisa on a program called "The Doctors".
I'd love you to post on that site saying you don't recommend exams for 13 year old girls, but it would simply be deleted...
How could any competent, ethical Dr even suggest such a thing?

Anon, The Australian sites talk about LEEP AFTER an abnormal pap is confirmed by colposcopy AND biopsy.
Query this with your Dr, also, I'd ask about the risks of the LEEP procedure including damage to the cervix.
I've read LEEP (and conizations) can damage the cervix and cause issues for some women if they want to have children - you might want to discuss that matter with your Dr.
If you do a search for "LEEP after abnormal pap smear", you should find some references.

Kat said...

Anonymous said,
'Pelvic exams can be a necessity for many woman. Many women also want them for a variety of very valid reasons.'

The only 'valid' reason that a woman might 'need' a pelvic or breast exam is if she is suffering from problems in those areas, and even then those exams are far from productive.
As Elizabeth has pointed out, routine pelvic and breast exams are no longer performed in many countries - studies have proven that they are of little value.
Any woman who 'wants' their private parts checked as part of a routine exam is not making an informed decision, she is acting out of fear - of course she will demand her regular check when she's been led to believe for so many years that she's going to drop dead if she doesn't get one!
Just look at how many women reacted when the ACOG changed their guidelines - panicking that their lives were being put at risk when in fact the ACOG simply realised their rules were draconian and needed to be relaxed.
This fixation with women's health has lead to a large proportion of women living in fear of their own bodies, which isn't healthy at all.
And when you pay so much attention to one area of your body, there is a danger that the rest of your body could be neglected.
Screening, whether you choose to test or not, is always a gamble. There is a tiny chance that screening may help you avoid a life-threatening disease. On the other hand, vast numbers of people are damaged, psychologically and physically, in order to save a few lives. Victory at all costs is not a principle I agree with.
I am aware that one day my cervix, breasts, or bowels might become diseased. But I am also aware that my heart is more likely to kill me than any other parts of my body, yet heart disease doesnt seem to have had the fraction of the attention devoted to 'women's issues' (or has it, Dr. Sherman?)
Furthermore, Anonymous, no-one here is trying to scare women away from genuine healthcare, so to draw comparisons between those of us who would simply like women to take charge of their own bodies and the authorities who for years have used bullying, blackmail and sometimes outright lies to scare women INTO testing is very unfair.

BTW, would anyone like to explain to me how a Gynaecologist, who is supposed to be an expert on the female reproductive system, can require breast or rectal exams as part of the 'well-woman' check when these are not reproductive organs? Since when did the rectum become a 'female' part? I'm pretty sure men have a butt as well...

Violet to Blue said...

"Furthermore, Anonymous, no-one here is trying to scare women away from genuine healthcare, so to draw comparisons between those of us who would simply like women to take charge of their own bodies and the authorities who for years have used bullying, blackmail and sometimes outright lies to scare women INTO testing is very unfair."

Apart from Matthew Kaplinsky who posted here very recently with the "all pelvic exams are rape" essay...? The comment is perfectly fair. (and I speak as someone who has been on the wrong end of the "bullying, blackmail, and sometimes outright lies" - i don't appreciate it from ANY side in this debate).

Elizabeth said...

The continued withholding of risk information in relation to screening has reached a critical stage, IMO...
There are some heated discussions in the UK about the breast screening program and Prof Baum has called for the program to be shut down - too many women are being harmed.
It alarms me that little of this debate is getting into the newspapers or onto the TV where ordinary women might come across it...it's being argued in journals or at conferences.
In Australia there has been some information over the years, but certainly no where near enough to inform women there may be major risks with mammograms, the main area of concern being over-diagnosis with DCIS and lobular carcinoma. (the latter isn't even cancer)
We have women being turned into cancer patients with "cancers" that are not even cancer or with something that is usually a non-life threatening cancer. (DCIS)

I have to conclude that censorship in Australia has been highly effective. Most women who have mammograms in this country are completely unaware of the risks and that concerns me greatly. Instead of focusing on censorship, continuing to sell screening and worrying about targets, the problem needs to be immediately addressed for the sake of all women.
Gilbert Welch is releasing a book in January 2011 entitled, "Over-diagnosing" - making people sick in pursuit of health, it apparently contains a lot of information on mammograms.
If you google, "Bid to end breast screening and Prof Baum", it should appear, for some reason I can't link the article.

Anyway, regardless of the views of the Govt, screening authorities and doctors, it is totally unacceptable for these discussions to go on for years excluding the very people who may end up harmed - women must be advised there are concerns about this testing and allowed to make their own decision.
The continued blinkered pursuit of targets in the face of major concern about the risks of testing is beyond unethical.

Joel Sherman said...

Here's an article by Prof Baum called 'Why I Am Still a Screening Sceptic"

Joel Sherman said...

Here's an article about a study showing that male circumcision not only cuts the risk of HIV, but also of cervical cancer. A new finding I believe, but not a surprising one as circumcision seems to reduce the burden of male carried STD.

Elizabeth said...

Thanks for the link, Dr Sherman.
I've just read a pullout feature for doctors that appeared in "Australian Doctor" called "cervical screening" by Assoc Prof Margaret Davy, Director, Gyn-oncology, Royal Adelaide Hospital and Dr Lesley Shorne, GP.
There are a couple of interesting admissions.
Aside from referring to cervical cancer as a rare outcome of HPV infection, under controversial issues, they state;
"No country has reported any decline in the incidence of or mortality from cervical cancer in women under 30, irrespective of cervical screening. Many countries do not perform screening in women under 30".

There you have it...yet Papscreen and the Cancer Council are currently scolding young women for failing to screen. We have a situation where young women are risking their health following the screening guidelines - doctors KNOW it won't benefit them and it risks their health.
Some doctors take comfort with the reduced referral guidelines, but my GP tells me that doesn't really work - very anxious and fearful women are immediately referred and other live with fear and worry until they re-test in 6 or 12 months.
Of course, young woman are most likely to get a false positive - 1 in 3 tests will be abnormal even though cancer is very rare in this age group. (and rare in all age groups)
Why are we continuing to urge these young women to screen and risk their health for no benefit?

Another gem: The Dr's admit our women are more likely to have colposcopy because of our shorter screening intervals. Great, over-screening is hardly something to be proud about...

The Dr's pose a hypothetical Q:
"If a woman is over 30, in a monogamous relationship, has a negative pap smear history and no high risk HPV types on DNA testing, is there a need for her to have pap smear screening at all?"

A: "We cannot make assumptions about her risk status remaining the same. Screening guidelines need to be devised for the population, not individuals, so one would be reluctant to advise her that she should stop testing"...
Of course, it would never occur to them that the facts should be presented to the woman and the decision left to her....instead she'll continue to have unnecessary testing that risks her health.
That speaks volumes, women should always look at their risk profile and make their own decisions, the guidelines are more likely to risk your health for no or little benefit.
The fact: doctors and govts will recommend screening when there is no benefit to you and when it risks your health.
Beware!

Elizabeth said...

Part 2

The Dr's pose a hypothetical Q:
"If a woman is over 30, in a monogamous relationship, has a negative pap smear history and no high risk HPV types on DNA testing, is there a need for her to have pap smear screening at all?"

A: "We cannot make assumptions about her risk status remaining the same. Screening guidelines need to be devised for the population, not individuals, so one would be reluctant to advise her that she should stop testing"...
Of course, it would never occur to them that the facts should be presented to the woman and the decision left to her....instead she'll continue to have unnecessary testing that risks her health.
That speaks volumes, women should always look at their risk profile and make their own decisions, the guidelines are more likely to risk your health for no or little benefit.
The fact: doctors and govts will recommend screening when there is no benefit to you and when it risks your health.
Beware!
See: AD_HTT_033_040_JUL28_06.pdf or, search, "cervical cancer screening - australian doctor.com.au and davy".

Anonymous said...

Elizabeth, I do not know how to comment on the other blog unnecessary...but I thought both you and Dr Sherman's readers would be happy to see this article on KevinMD.com

http://www.kevinmd.com/blog/2011/01/hpv-test-doctors-testing-guidelines.html

tear

Joel Sherman said...

Thanks, that's a nice article.

Elizabeth said...

Dr, the worrying thing is I keep reading articles scolding young women for failing to screen YET there is no evidence screening helps these women, but there is lots of evidence of harm...these articles are rarely challenged...it seems because misinformation and negligent advice appears so frequently in cervical and breast cancer screening, that anything goes...
These authors MUST know the truth, many are senior doctors, yet they're confident and feel safe advising women to do something that is likely to harm them for no benefit.
I'm relieved that fewer young Australian women are screening - hopefully, they've managed to get to the truth.

PearlGirl said...

Thank you for your blog Dr. Sherman. This messege board has opened my eyes to realities of cervical cancer screenings. The pressure that the medical establishment places on American women to have these painful and often uneccessary screenings truly bothers me. I also have a question for any physicians/nurses reading this blog.

At nineteen, I went to my college student health services for a UTI. I expected a urinalysis, an abdominal exam, etc. But the nurse practioner told me I needed a pelvic exam and a pap smear. Keep in mind I was a virgin and had no evidence of urethritis.

Professionals, was a pelvic exam and pa smear really neccessary?
What also bothers me is the behavior of the nurse practioner. The pelvic exam itself was too traumatic and painful for words.I shrieked and actually cursed aloud (a rarity for me). The nurse did not stop b/c apparently I didn't use the actual word "stop", rather like a game of Simon Says. All she would say was " It's only two fingers, you'll be okay." Why she gave me a Pap smear I cannot fathom. I cried for hours afterward and my pelvis was sore for a week. For some reason my UTI was much worse after that gyn. exam. It took two doses of antibotics to clear up, instead of one. Again, you health professionals, any speculation as to why?

I later learned a factoid that infuriated me. One of the other nurses at student health admitted that they gave pelvic exams to " almost every girl that walks in the door". I can't help but wonder if a captive audience of young women would be the perfect way to meet cervical screening targets and get some nice, fat bonuses along the way. Thank you everyone for reading this. I am embarrassed to admit that this story upsets me even though the events occurred years agao. I have never told anyone before and will never tell anyone else.

Joel Sherman said...

PearlGirl, I do not have any expertise to answer your question. There are others here who do. As a simple answer, I would think that an isolated urinary tract infection requires a urine culture followed by appropriate antibiotic treatment. Recurrent infections would need a fuller workup including a complete genitourinary workup with physical exam and often imaging procedures.

Anonymous said...

PearlGirl,

Similar story. I think I have PTSD, 30 years later trying to keep the terror dormant it comes back because I'm still a woman.

You're asking if what happened to you was right, and you already know it wasn't. Now what?

I keep hoping someone will know what to do next.

Just in case you're thinking of it, not going to the Doctor at all was NOT a good solution. But I don't know how to find safe medical care,

Thanks for sharing your story, TEAR

Elizabeth said...

If you had presented to an Australian or English Dr, you would have been asked for a simple urine sample and given some antibiotics and perhaps, some info on how to reduce the risk of UTI's in the future.
I simply don't understand how patients can be left so vulnerable - with no protection from abuse and unethical conduct. In most countries, doctors have to justify their conduct (if a complaint is made) - they KNOW they might have to explain why they did a breast exam or anything else.
A 19 year old virgin presents with a UTI - why did you perform a pap test and pelvic exam?
Please explain, the Medical Board (and even the Police) are listening and waiting for your response.

You'd be struggling here or in the UK.
Pap tests are NOT recommended for women not yet sexually active, (and not before 25 in the UK) BUT, in the States, the recommendation astonishingly includes ALL women, apparently to cover women who might be lying about their sexual history...wow! If this happened years ago the official starting age would have been 18, but it seems many doctors test girls much younger - an American woman on one forum said her first pap test was at 14!

(In the article, "Time to Change the Policy" by Dr James Dickinson - he assumes most American doctors must surely ignore that guideline. (including virgins in pap testing) Basically, it's absurd, cervical cancer is linked to HPV, an STI) Even the Mayo Clinic website says virgins "probably don't need pap tests".

The pelvic exam - NOT recommended in symptom-free women here and in the UK, but it's an institution and article of faith in the States.
Many doctors seem to do as they please anyway...many are still doing annual pap tests against the recommendations and still demand pelvic exams or refuse to prescribe the Pill, HRT and other meds - even though they've been told the exam is unnecessary.
Some say a routine pelvic is required once you're sexually active, others say 18, others say 16...now ACOG want to see girls as young as 13!
It's all very loose and open to abuse.

So, I guess that has produced a risky environment for women - anything goes, short of extreme conduct. Given some/many doctors do routine pelvic exams on teenagers, I imagine your Dr/NP would have little trouble pointing to the "standard of care" - many women have said their doctors refuse the Pill without the well-woman "works" because even though these exams are unrelated to the Pill and strictly speaking unnecessary, they're still part of the standard of care set by doctors.
Surely that makes recommendations & guidelines a complete waste of time.

I think many women bottle up the pain and remain silent. I see the only way forward in the States is to take serious action.
It's clear many doctors/NP's are not getting the message - and will only change their behaviour when they're forced to do so or when their actions have serious repercussions.

At blogcritics and unnecessary pap tests many women (and some men) have posted - over 3500 posts so far. One of the posters is setting up a group to fight for justice and fairness in your country...a group to educate, support and advise women.
I hope as more women come forward & complain, as more say NO and take action, this sort of abuse will no longer be almost the norm.

Anonymous said...

Doctor, Wouldn't coercing a women into cancer screenings be a violation of human rights? If they are not given informed consent and/or refuse but are still pressured into being tested isn't that illegal? Informed consent cannot be "assumed" in this or any case, but routinely women are simply told they need to screen and there are minimal risks (the risk being false negatives mentioned, not false positives). When I use to go to the doctors they never gave me information but told me I had to screen. From reading this and other blobs I have read similar stories to mine more times than I cash count. Women are made to feel these tests are necessary, but with coercive practices and finacial incentives isn't this a major viation of our rights?

Anonymous said...

I also wanted to mention that under the patient's bill of rights People have the right to informed consent and to refuse treatment. If a doctor continuall coerces a woman into a test she doesn't want in says she doesn't want, but because of scare tactics she does have the test, does that violate the patient's bill of rights since she was never properly informed if the risks involved?

Joel Sherman said...

Anon, I don't believe that there is a national (US) bill of patients' rights that mentions informed consent. Obamacare does give you increased insurance rights, but I am not aware of any provisions that cover the physician patient relationship.
If you're in a hospital, I believe nearly all hospitals have to publish a patient bill of rights which should mention informed consent.
Some states may have regulations mandating informed consent in physicians' offices.
The major enforcement of informed consent really falls under malpractice laws unfortunately. That is not worth invoking unless you have suffered major consequences from the lack of informed consent.

Joel Sherman said...

Australians beware. Pelvic exams done without permission while under anesthesia are still performed in Australia. I'm surprised. Look at the comments too. Some support the practice as perfectly legit.

Elizabeth (Aust) said...

Thanks for the link, Dr Sherman.
Most people are appalled and angry...the medical profession are saying the article is being sensational and it's "not as it sounds".
We'll see...

Elizabeth (Aust) said...

Dr Sherman,
An American woman is trying to get birth control without a well-woman exam. I've found quite a few American references that say these exams are not required for the initiation and safe use of the Pill.
I was actually surprised how many American doctors seem to be speaking out about the unnecessary barriers that prevent access to the Pill.
Her lawyer-friend has advised that even though these exams are optional, a physician has the right to refuse a woman the Pill if she declines the well-woman exam.

I would have thought the well-woman exam is unnecessary, rather than optional. Shouldn't that make a difference?
It seems American women are trapped in this insidious web - being coerced into well-woman exams that are unnecessary - they are not required, but if a Dr wants to do one, she's stuck...
Also, how can a Dr justify doing an exam that is NOT required for the Pill?
Doesn't that put women in a vulnerable position? I'd be extremely uncomfortable with that arrangement.
We can simply change doctors, but that's more difficult for Americans. (as I understand it)
Is there a solution? How do women cope with the clear message coming from above that a blood pressure test is all that's required for the safe use of the Pill and the coercive attitudes still blocking access to the Pill in the consult room?

Joel Sherman said...

Elizabeth, there is not much a woman can do if the doctor refuses the pill without a full exam. It really is a tradition in this country, albeit one backed by no evidence. Planned Parenthood may be an option but not a pefect one. One can try bringing in articles on the subject to try to convince the physician to prescribe. In the US a physician is under no compulsion to prescribe or treat if he/she doesn't agree with it.
Hopefully this attitude is changing, though slowly. The more women who speak out to their doctors, the sooner it will happen. I think most gynecologists are now aware of the data, even if they haven't fully implemented it yet. My wife's gynecologist finally told her that she doesn't need any further routine visits.

Elizabeth (Aust) said...

It does seem to me that more American doctors are speaking out about the unnecessary barriers that surround birth control.
I found this recently, surely that's helpful.
http://www.medscape.com/viewarticle/733309
I'm so pleased your wife can finally put those exams behind her.
If this is too personal a Q, just ignore it, but did your wife raise the topic with her doctor or did he volunteer the information? The latter would be another positive sign. The former not so much as it may mean he excuses informed women and continues to test every other woman with a long history of normal pap tests - more than 40!
More American (and other) women are giving up and ordering their pills online - I wonder whether that will prompt change - missing out on patients altogether....you derive no income from a woman you don't see at all.
My American colleagues (we work together in HK from time to time) will order on line when they return to the States - after years of getting BC with a simple BPT in HK and enjoying better health - no biopsies, fear, stress, invasive exams, LEEP etc...they're not going back to compulsory stirrups!

Joel Sherman said...

Elizabeth, my wife did give the doctor some inkling of what I was blogging about, so I don't know how much it means.
But clearly he was accepting of the facts.

Elizabeth (Aust) said...

You're making a difference and so are a few other doctors like Robert Hatcher from the Managing Contraception site.
Dr Hatcher made these strong comments recently in the Pill without exam debate.
More pressure is definitely being applied...
http://www.managingcontraception.com/newsevents/dr-bob/pelvic-exam-necessary-for-contraception-rx/

I hear though that on Plan X (I think is the name) - low cost or no cost health care for low income women in the US carries a federal Govt requirement of cancer screening, pelvic and breast exam, so that will need to be challenged.

There defineitly seems to be some momentum happening in the States and the Australian Govt is soon to announce changes to our over-screening program - pap tests will be recommended (with a lot of should and must's included) every 3 years from age 25. (same as the UK)
This will still send 65% of women for colposcopy/biopsies to cover a 0.65% lifetime risk of cc and to help 0.45% of women.
Of course, women will still be unaware of the risks and actual benefit of the testing and that they're doctor gets an undisclosed payment from the Govt for reaching a target, so still no informed consent - still a long way to go.

Anonymous said...

I just came across this article from ABC News about the "tests women fear the most." Just the title alone angers me, as it is sexist and implies that women are a bunch of ninnies who are afraid of undergoing tests. Did the writers of this article and the so-called experts on whom they relied for their information ever stop to consider that many of these women don't "fear" these tests, but rather question the value of them? Funny how you never see men's health articles with such titles as this one.

http://abcnews.go.com/Health/WomensHealth/screening-tests-women-fear/story?id=12874846&page=1

Joel Sherman MD said...

The other issue is that women fear the results more than the test, which is natural for mammograms especially.
But men are frequented degraded for avoiding tests. Here's a notorious example by a Dr Orrange.

Anonymous said...

I'm 27 and my husband is 28. I asked him of he hahas ever been told to get optional cancer screening tests ever in his life. Not surprisingly his answer was no. I have severe allergies and asthma and he's been to a couple of doctors appointment with me and he was angry with how I was treated in general. I go in for something unrelated to my vagina and they me I need a pap test. He told me that when he goes in for a specific complaint that's the only thing that's ever dealt with. I told him that's what I get every time I go to the doctor. Plus he's young so that might have somethig to do with it, but testicular cancer strikes 8500 men a year and routine screening is not recommeneded because it's rare (and so is CC). I bet if they tested for testicular cancer more they would find more incidence of it - once again the phenomena screening

Elizabeth (Aust) said...

I firmly believe we fear cervical cancer because we've been trained to do so...I was just doing some number crunching and found that oral cancer occurs just as often in women, (if not more often), yet we don't fear oral cancer.
Anal cancer occurs less often than cervical cancer, but is on the rise.
Research has found 73% of oral cavity tumors tested positive for HPV 16 DNA and 80% of anal cancers positive for either HPV 16 or 18 DNA.
So much is made of HPV & cervical cancer and Gardasil has been heavily marketed to girls and women - yet very little is said about oral cancer. (or anal)
Screening has focused on cervical cancer, so that's what most women fear, yet oral cancer is just as much a risk, if not a greater risk. There are no screening programs for oral cancer even though I suspect, it would be fairly easy. In fact, I've heard VERY little about oral cancer over the years and certainly no suggestion we should be screened for it. (not that I'm suggesting we need more screening) Few people seem to fear oral cancer and even though doctors and others will go on endlessly about HPV and cervical cancer, I can't recall any Dr etc talking about the link to oral cancer.
Roughly 10,500 women get cervical cancer every year and 4000 will die from it, but 11,120 women get oral cavity cancer and another 3300 will get tongue cancer. 1990 men and women will die from tongue cancer and 7880 from oral cavity cancer. Men get twice as much tongue cancer as women and slightly more than twice the amount of oral cavity cancer, but even so, that means roughly 3800 women are dying from oral cancer every year and another 1000 from tongue cancer - 4800 - MORE than cervical cancer. Men get more oral cancer and there is a link with HPV 16, which is covered by Gardasil, yet I've never heard any talk of vaccinating males to protect against oral cancer BUT girls and women are being vaccinated for a SMALLER risk from cervical cancer.

According to SEER cancer statistics:
The lifetime risk of oral cancer is 1.31% (0.29% for tongue cancer & 1.02% for oral cavity cancer) Risk factors: HPV infection (16), smoking and alcohol consumption.
Lifetime risk of anal cancer in 2006/07 - 0.16% and apparently rising.
Lifetime risk of cervical cancer - 0.68% (Ovarian - 1.39%)

If you said to most women (or men) that you had HPV and feared oral cancer, were having yearly checks and your oral surgeon was removing anything that looked "suspicious" - people would think it quite odd...

HPV affects men too and is linked to penile, anal and mouth cancer - yet reading about HPV, the link with cervical cancer is ALWAYS mentioned and often described as, "by far the most serious consequence of HPV infection".
It seems both men and oral cancer are not worth talking about...

Elizabeth (Aust) said...

Found some information on this situation: the funding of research into cervical cancer and screening is huge, funding into oral cancer is very low - therefore, even though oral cancer takes more lives, the focus of Gardasil was always cervical cancer because that's where the money is...govts will fund research for certain cancers, not others, even if the latter are more common. Currently here in Australia bowel screening is struggling for funding even though it kills far more people than cervical cancer.
Some doctors in oral cancer hope the application of Gardasil may be considered in their field as well as a screening program, but trialing and research must be done before that happens...which means looking for money. You can sell Gardasil because many women greatly fear cervical cancer, oral cancer is a harder sell, people don't even think about it, even though it's more common.

Joel Sherman MD said...

Here's an article from the Wall Street Journal blog questioning the need for routine annual pelvic exams. Clearly this line of thought is now getting more publicity.

Anonymous said...

Dr. Sherman,

Can you comment on the fact that some women cannot get a GP without a pelvic exam and pap smear?

I first went to my current doctor about 10 years ago (female GP, age fifties). I had not seen a doctor in decades, but was battling a respiratory infection and was having difficulty breathing. One of the first questions of course was, "When was your last pap smear and pelvic exam?" I told her I did not come there for that and to please address my respiratory ailment. She did, but I was reminded that I "needed to schedule a pap smear ASAP". Fast forward to last year when I was having a bout with insomnia and decided to get some medical help. Since I am in my fifties and heart disease runs in my family, I have decided I would like to screen my cholesterol and have a yearly blood work up. Guess what the first questions was once again? This doctor then told me that "we don't have to do the pap and pelvic today, but come back next week and after your pap and pelvic we can discuss your insomnia and do some blood work". When I have mentioned this on other forums in reply to various articles, I have even had doctors accusing me of lying, and that this behaviour is considered unethical. It was only after I asked my doctor point blank if she was refusing to do blood work and address my insomnia without a pap and pelvic that her demeanor changed. I began to get up as to suggest I was going to leave and she reluctantly went ahead to address the insomnia.

I have since found out that many doctors won't even see a patient initially without a pap and pelvic in the initial consultation. To me it seems pointless to have "patient rights" if doctors insist on doing an exam or test that you do not want in order to treat something totally unrelated.

Can you comment please? How should women handle this problem?

Joel Sherman MD said...

Anon, there's no 100% answer. Assuming that seeing another doctor who will do what you want is not an option, you can start by bringing in articles that support your position. It is not ethical for a doctor to withhold treatment for an unrelated non urgent reason. Even if the doctor is correct that you do need these tests by accepted guidelines (and we know that many don't follow the guidelines), she/he is still required to treat you or refer you to someone who will.
If you have to change doctors, you have the option of filing a complaint with the appropriate state medical board. If enough women did that, this kind of treatment would stop.

Anonymous said...

Great info here, thank you Dr. Sherman. Maybe not exactly for this forum, but you might find it worth a read.
My wife's medical care is best described as a train wreck. Her first visit to a DR at 18 ended up with her being verbally and physically abused by the DR. 2nd trip, different DR., into the stirrups, no abuse but not much better with a mis diagnosis of a STD, and told to find someone else to treat her. Bring in the next provider. He was a breath of fresh air for her. First thing he did was verify she did not have a STD. He treated her and gave her some good advice when she told him of her previous disaters. he said: "bring someone with you to hold your hand, since it is traumatic, that person can listen and also have your best interest in mind also, if they have a problem with that, you need to get up and leave". New city 5 years later, new DR. She wanted to talk with the DR about fertility. She was given a gown, told to spread em, and then referred to a fertility specialist. It took her 11 years to go back to a new DR, and only then because she thought she found a lump in her breast. This DR got so flustered with her because it had been 11 years since her last pap, he walked out and a technician came in a few minutes later with an appointment for a pap and breast exam a week later. She goes back, the same male technician comes in and gives her a gown and tells her to put that on, she requested to talk to the DR. first. The tech didn't want to bother the DR until she was ready. My wife was like ok I am out of here. The tech said he would go get the DR then. DR comes in and ask her what is the problem? She basically told him she was unhappy with him leaving and not checking her breast the week before. Did she need to go to a womens clinic. He assured her he would be her DR for years. PAP is done, breast exam, lump appeared to be a gland. The DR gave her a prescript for BC. Sent her to xray for and ultrasound. The radiologist refused to do a ultrasound, said he would only do a mamogram. She walked away. The sad part she had to call this DR 3 times to get a result on the pap, he tried blowing her off my saing if you don't hear anything, assume it is good.
4 months later at the DR again only to be referred to a womens clinic. She ask him what happened with you being my DR for years? He just walked out.
Another new DR at the womens clinic. This DR listened, didnt try to do and exam, instead requested blood work, ultra sound, and presribed some medicine for her. Off to the same radiology clinic, where she was told that I wasn't allowed with her for the ultrasound. She told them it was her choice for me to be there for her. There answer was: husbands make our ultrasound techs uncomfortable. She ask them what about my uncomfortableness? There answer was our employees come first. Now waiting on the DR to send the ultrasound order to another imaging clinic, who has no issues with me being there. They told her bring whoever you want. My wife is a tough woman!

Elizabeth (Aust) said...

Dr Sherman, I've been delighted to see so many honest media releases in the States recently. Finally more doctors seem to be speaking out...Dr Robert Hatcher, Dr Carolyn Westhoff...there are still those engaged in scare-mongering, but they are sounding less convincing as more evidence based advice is released to women.
Women will surely wonder at doctors like "Lisa" on "The Doctors" and her "advice" to women that ANNUAL pap tests and pelvic exams are VERY, VERY important.
I don't think any group in the States continues to recommend annual pap tests for sound reason - they increase the risk, for no additional benefit. Her powerful endorsement of the pelvic exam sounds a bit hollow when you read the article by Dr Carolyn Westhoff and others.

I think this is all very encouraging...but what has been the catalyst?

My American colleagues told me only a year ago that American doctors would never give up their hold over women and that coercion would continue to be the norm. As I see it, as more doctors feel the pressure to drop unnecessary exams, the remianing doctors practicing non-evidence based medicine will lose business and revenue...the boycott only worked because everyone was involved and women hit a brick wall if they tried to get the Pill or HRT without gyn exams. (and in some cases any medical care) Now the wall is falling apart, it makes me think that change will occur even faster.

Of course, many American women have been so conditioned to think the healthy female body needs to be "managed" that they'll be nervous and refuse to accept any changes.
I read a disturbing post by an American women - she asked several UK doctors to do a pelvic exam on her teenage daughter. Thankfully, they all refused saying it was unnecessary. Her mother took her along for the well-woman exam at 16, so she feels she should do the same thing for her daughter. I posted, but she became quite aggressive. It's clear she intends to find a Dr to do the exam either using a contact in the UK or when they return to the States. I felt terribly sorry for this asymptomatic teenage girl.
I guess change doesn't happen overnight.

Joel Sherman MD said...

Thanks for the updates Elizabeth. Glad to hear you think conditions are improving in the States.
Do you have links for Drs Robert Hatcher and Carolyn Westhoff?

Elizabeth (Aust) said...

http://www.managingcontraception.com/newsevents/dr-bob/pelvic-exam-necessary-for-contraception-rx/
(Dr Hatcher)
http://www.latimes.com/health/la-he-pelvic-exam-20110220,0,5998063.story
(Dr Westhoff - this article has been reprinted in numerous places)

Elizabeth said...

Another promising development - the UK have changed their target payments for doctors. It now seems doctors receive payments for various things and the payment for cervical screening is not linked to the number of women who screen...
The UK is fortunate to have some strong advocates for informed consent in cervical and breast cancer screening.
Sadly, most Aussie women are completely unaware of the target payments...and it's NEVER mentioned in the screening literature, by doctors, the Govt or mass media.
It appears to be a closely guarded secret. I think until we get rid of these payments or the system is changed, informed consent is a lost cause.

Joel Sherman MD said...

Thanks for the links Elizabeth. They are good.
Here's another study which you won't like that claims women should continue getting Pap smears beyond the age of 65-70. I post this so that women can be warned that they may have this quoted to them. But the study did not take into account the patient's prior history of Pap smears. The ACOG recommends stopping Pap smears if your last 10 years of screening have been negative, not if you've never had regular screening.

Elizabeth said...

If women were given a proper assessment of the test and its risks and benefits, well...women could do what they thought was right, even at 80 years of age.

It's the way women are ordered or coerced into testing with no "real" information that has always concerned and angered me. It's inappropriate - cancer screening has risks and we all have different risk profiles - it is supposed to be our decision.

It is such a small risk, yet it gets front page attention every time. I was reading a post on a forum from a 33 year old Belgian woman. Her employee now "requires" for continuing employment that all female employees have an annual pap test. This woman is a virgin and obviously doesn't wish to test. She also doesn't want to discuss this very private matter with her employer.
I find it outrageous that an employer could use coercion to force women into voluntary screening programs. I cannot believe that a Belgian employer would have that power. It is shameful that some employers believe they have the right to meddle in our personal health business - it is none of their business whether we have pap tests, mammograms or anything else.

The really frightening thing is some women approve of coercion and say, "well, she should be having these tests anyway" or they see it as an example of their employer actually caring about their health.
This is the way some women now think - coercion seems normal and even a great idea.
I'm sure some women just comply with these outrageous requirements, never knowing they have the right to refuse and that's why these requirements keep happening...they usually work.

Joel Sherman MD said...

A local hospital just released their cancer statistics for 2009.
The number of cases of the following cancers were seen in that year:
Breast 184
Prostate 42
Cervical 1
Testicular 2
Details are not given. Probably not included are cases totally treated as outpatients which may explain the lower incidence of prostate cancer. The message is the same; cervical cancer is rare.

Elizabeth said...

Of course, Dr Sherman, Papscreen and other groups peddle the same dishonest story - "cervical cancer is rare "because" of screening"...which contains the threat, stop screening and rates will go way up again.
But when you look at the stats, it was always rare. They also compare our rates of cervical cancer with Africa, and say, "see what happens if you have no screening test, aren't we lucky?"...so dishonest.

I've just read Dr Gilbert Welch's new book, "Over-diagnosis" and he makes the point that other factors may explain the decline in cervical cancer (or partly explain). There are NO controlled trials for cervical screening, so we'll never know for "sure" whether it works or not...there are lots of other factors that are playing a part. (all ignored by Papscreen and other pro-screening groups)
Also, in most countries the cases of cervical cancer that actually happen (and I'm not talking about dysplasia, pre-cancer, CIN or any other term that many women accept means cancer or would be cancer) - well, one third to a half are in women who've had regular screening. Few women know these facts....

I do know that of all screening tests you are LEAST likely to be helped by cervical screening and MOST likely to be harmed (to some degree)....regardless of your level of risk.
I'd recommend Dr Welch's book - lots of interesting and enlightening information mainly with prostate and breast cancer screening.
It's the harm, fear and stress caused by cervical screening that concerns me and all kept VERY quiet....these women have no voice.

There was a heartbreaking post on BlogCritics recently from a young woman left with a cervix scarred shut after "treatment" following an abnormal pap test. She's had procedures to open the cervix and may need surgery. Her symptoms are severe and have a huge impact on her well-being and lifestyle. She has now worked out she was never at risk from cervical cancer and would have refused testing. (she was never "offered" screening anyway, it was "required" in exchange for birth control pills). This is a young woman left with severe damage to her body - and at no stage did she give consent (and certainly not informed consent) for the test or "treatment".
Also, she would not have been tested at all had she been English, Finnish or Dutch.
There are thousands of young women in this position, yet they have no voice. Most will never know they were over-treated.

The damage this testing causes to "perhaps" prevent a few cases of cervical cancer is scandalous and the really shocking thing is, few people even care.
Women need to understand they have a choice with cancer screening - there are risks and benefits and they should control what happens to their body.

Anonymous said...

This is a little off topic but in the same vein as informed consent for pap smears which has been widely discussed here. I have been doing some research on colonoscopy (another embarrassing, invasive, expensive and potentially risky exam), especially in light of the current recommendation that everyone over 50 get one. I have always wondered about the real risk of polyps, as far as their prevelance and possiblity to turn cancerous. I finally was able to get an answer from a doctor. If you are interested in his answer, go to http://ht.ly/4eqx5 (Questioning Colonoscopy Evidence) and scroll down the comments to "facts about polyps". This information was quite enlightening especially since most other websites always stated that a colonoscopy can detect and remove polyps before they turn cancerous; making it sound a bit like all polyps will eventually become malignant! You will notice at the end of the comment there is a statement "the polyp scare is a great example of overdiagnosis", a problem some physicians are starting to realize. If you are of this mindset, you may also be interested in 2 books by Dr. Gilbert Welch: "Overdiagnosis" and "Should I Be Tested For Cancer: Maybe Not And Here's Why". He speaks to the fact that medicine may be doing a disservice and sometimes harm by screening healthy, asymptomatic people. I think these statistics should be made known to patients so they can make an informed choice about having this exam. They may very well be able to accept and live with this level of risk or they may opt for a less invasive screening test, such as FOBT or DNA stool test.

Joel Sherman MD said...

Thanks anon,
I was not aware of the controversy. It is worth following up on. Anyone know what the policy is in other countries that are less prone to recommend expensive tests?
At any rate, a negative colonoscopy means that another is not recommended for 10 years, a much more favorable proposition than Pap smears.

Elizabeth (Aust) said...

"Does lowering the screening age for cervical cancer in the Netherlands make sense?" - you'll find this article online. The conclusion: No
It's interesting that many of these studies look at American figures as evidence of harm or limited benefit in the shaping of their programs. I thnk American and German women would be the most over-screened women in the developed world and suffer the most damage as a result with Australian women just behind...
Even though the guidelines have changed in the States, I notice many American health forums and TV programs are still recommending annual testing (including women not yet sexually active from 18 or 21 - crazy!) I suppose it will only be when insurance companies refuse to pay that you'll see the excess being reduced...

Even if a woman makes an informed decision to test, many would appreciate the option of just 5 to 7 tests over their lifetime and maybe fewer than that with HPV testing as well.
The Australian Federal Govt is cutting back on rebates for blood tests and pathology. It's a red hot political potato, but we spend many millions on cervical screening to "perhaps" help 0.45% of women, whereas high cholesterol and its link to very common heart disease takes the hit. It goes to show that many of these programs are political in nature and not the best use of taxpayer funds. I think many are also getting tired of the aggressive Pink Ribbon lobby - it seems most of the money goes to those who have the most political clout and the loudest voice. We'd save many more lives with an objective approach.

Anonymous said...

Dr. Sherman:
I am not sure what the recommendations for colon cancer screening are in other countries but I did read that Austrailia sends out an FOBT test to all 50 year olds (along with others in a certain age range) and then only those who get a positive result would go on to colonoscopy. It also stated that advising everyone over 50 to get a colonoscopy would create too much of a volume and expense to their already overburdened health care system. Isn't our system already overburdened in the same way? It seems to me that the huge increase in people getting colonoscopies occured after Katie Couric got hers on national tv and took up that "cause". I can understand her concern after losing her husband to the disease but he was only in his 40s when he died and may have had some inordinate risk factors. I am surprised that they are not recommending everyone over 40 get the test based on that! The way I see it is that once that happened the gastro doctors enjoyed seeing a large increase in their practices, so on it goes. In my opinion people are like sheep: they follow everything without question. It seems to me that once you pass 50 (or just as you get older) you are at an increased risk for numerous conditions but cannot possibly be tested for them all. I have taken the stance that I only see a doctor when I am sick or having troubling symptoms. I'll take my risk and do what I can lifestyle-wise to prevent what is within my control but, after all, no one is getting out of this alive! Jean

Elizabeth (Aust) said...

Yes, Jean - I feel the same way. Cancer screening has to pass MY risk v benefit assessment having regard for my risk profile - and not some population health objective.

The Australian Govt has been rolling out FOT testing for people turning 50, 55 or 65 and the program is fighting for every tax dollar to increase coverage. I know some people are buying $25 kits from the chemist rather than wait for a special birthday present from the Govt.

It really shows how the pin-up cancers get all the money especially cervical screening - which costs a mint to "perhaps" help 0.45% and creates more patients along the way with 77% of Aussie women being referred for colposcopy/biopsies at some stage. Some women are left with continuing health issues after unnecessary procedures. The all-up cost would be ENORMOUS.
Almost all of these referrals are false positives and represent over-detection and over-treatment - yet no one says a word while people die in FAR greater numbers from things that are largely ignored or preventable - heart disease, diabetes, obesity, binge drinking, bowel cancer etc

I have a family history of heart disease, although it seems to be a bigger issue for the males, who tend to die in their 60's. (my father was 68) Not one male has made it to age 70 - the women have heart attacks in their 80's and 90's. IMO, not a bad way to go at that age - all were active and just went bang - no expectation of death, no suffering...my paternal grandmother was sitting up in bed drinking her morning cup of tea and just fell back onto her pillow in HER bed - a full and happy life over at 86.

IMO, all screening is highly political, which means BEWARE - you won't get the truth.

Many low/medium risk Australians are advised to have colonoscopies by their doctors and in medical articles in the mass media - also, many people recommend them to their friends and family. My SIL is pro-colonoscopy and has them 5 yearly (from around 50) - she's pressuring us, but we're still considering the subject and that means doing our own research.

Many people are appalled to hear you don't screen, but they seem to be screening in ignorance, have been misled as to benefits and risks or they just "believe" in screening.

I don't believe all screening is a good thing - far from it.
There are many cases of "something" being picked up in a colonoscopy and "saving" that person...but many of those stories are "not quite right". Although I haven't heard that over-diagnosis is a major issue in bowel screening (indolent cancers) - I do know that most polyps DO NOT go on to cancer. I have a friend who's decided to have one at 60 and leave it at that...

So, many low/medium risk Aussies do have colonoscopies regularly from age 50 and meet the cost themselves...some have insurance companies who cover (to some degree) screening colonoscopies.

The "official" program is FOT every 2 years from age 50 (but the Govt doesn't cover all of that at the moment - we get a free kit at 50, 55 and 65) and colonoscopies for those deemed "high risk" - one or more first degree relatives with bowel cancer (especially if they're diagnosed before age 65)
Otherwise, you pay yourself...(or through your insurance, if it covers screening colonoscopies)
http://www.health.gov.au/internet/screening/publishing.nsf/Content/bw-gp-crc-guide

Joel Sherman MD said...

The FDA has rejected the use of the HPV vaccine Gardasil for use in women over the age of 27. Also remember that the vaccine causes a higher rate of cervical cancer in those already exposed to HPV.
All in all, its indications are limited.

Anonymous said...

The day I turned 27 I was extremely happy because I was no longer eligible for the hpv vaccine. Then a while ago I read Gardisil was being reviewed for women 27+ and I was horrified. I as put under a ton of pressure to get a vaccine I didn't want or need (and that may or may not be dangerous). I told several doctors it was my choice and not theirs, but apparently that's not a "good enough" reason to refuse their advice anymore. I'm still feeling terrible for all the young women and girls being pressured to get this though; women don't get much respect in the medicine.

Elizabeth (Aust) said...

This is the most concerning aspect of womens' healthcare - we're rarely "offered" vaccines or screening tests...the decision is made for us, others decide the benefits exceed the risks and we're considered non-compliant if we ask for more information or refuse. We're apparently not even entitled to real information - spin and puff is just fine.
IMO, women are not viewed as adults - the govt and many doctors still act as our guardians. I've heard doctors criticize prostate screening, but fail to see the same criticism applies to cervical screening. It seems like a double standard to me...it's fine to treat women in a certain way.

I don't think attitudes have changed all that much over the decades.
We need to make clear that we're not going to accept disrespectful and unacceptable treatment - it's only by reinforcing that we have every right to just say NO, that the message may finally get through....personally, I don't believe some doctors can "see" the unfairness and are quite shocked when they're challenged - they're used to just assuming a woman will consent or go along with testing. Some are even outraged that a woman might refuse an optional exam or screening test. They clearly regard our screening tests as unwritten laws.
Congratulations Anon, it's not easy to stand up for yourself in the consult setting.
I urge all women (and men) to shop around until you find a Dr who treats you respectfully and accepts "your" healthcare decisions. It should be a two-way conversation, a working relationship, not someone barking orders and threats.

Eliz52 said...

There is a great lecture on line - Professor Michael Baum, UK breast cancer surgeon speaking at UCL recently on, "Breast cancer screening: the inconvenient truths" - it takes 35 minutes to listen to the lecture on Utube or the Medphyzz site, but it might spare you or a loved one a lot of grief.

Eliz52 said...

There has also been some serious criticism of the latest redraft of the UK breast screening brochure.
I don't think any screening, medical, govt or womens' group would ever be able to produce a leaflet that respects informed consent.
The emphasis has always been on Govt targets with zero respect for informed consent - I can't see that changing much especially when the "success" of the cervical screening program rests on a knife edge and women in increasing numbers are walking away from breast screening.
I think Papscreen were lucky that most the the brainwashing of women was achieved pre-internet and many of those women have just accepted the half-truths and exaggerations as gospel.
The criticisms of the leaflet appear in the Letters section of the BMJ.

Joel Sherman MD said...

Thanks Eliz52.
Professor Baum's speech can be accessed here. His work has been mentioned here before.

Joel Sherman MD said...

Well here's a quaint new law in Brazil. Women's and men's underwear will now come with warnings that you need to get regular breast, cervical and prostate screening exams. Women's underwear will also come with a message pushing the importance of using condoms though you would think that warning would be more pertinent to men.
Maybe it would be better just to publicize screening facts than to invade our underwear.

Anonymous said...

Wow ... just wow ... No need for informed consent here or any actual information. This is insulting on so many levels I don't even know where to start.

Joel Sherman MD said...

Here's one of numerous just released articles summarizing two new studies which show that HPV testing is superior to Pap smears and that women can safely go 3 years between Pap smears.

Elizabeth (Aust) said...

The only problem I see is from memory HPV testing produces even more false positives and that can draw women into that awful cycle of testing, biopsy, re-testing on and on...
It does annoy me when doctors say cervical cancer is preventable...they always wash over the false negative cases caused by human error and by the even rarer types of cc that are usually missed by the pap test - adenocarcinoma.

I firmly believe women should get honest information and have an opportunity to decide for themselves, instead of being told what to do and acting in a vacuum of ignorance. Doctors and others often argue, "what happens if a woman doesn't have testing and gets cc?"...but that's not a concern when there is respect for informed consent. It becomes a concern when the doctor assumes responsibility for the decision-making and women are kept ignorant or misled and just follow orders or recommendations. Some women might forget screening if they had the facts and a choice (many American women have no choice) - that's their right, just as men might decline PSA testing and others decline a colonoscopy.

Pap tests have been placed in a different category and are regarded and treated as something other than screening.
My doctor simply made a note on my file, an American doctor might ask for more...due to increased concerns about legal liability....but that could be sorted out if women were given the chance. Some women might prefer to set their own schedule rather than be forced into over-screening. It's the over-detection and over-treatment that concerns me with both pap tests and HPV testing and the total lack of respect for informed consent.

If you compare bowel screening to cervical screening - we rarely hear about the former, it struggles for funding in Australia and is a piecemeal program, yet that cancer takes far more lives. Cervical and breast cancer screening get all the money, but astonishingly, cervical cancer gets the most money by miles...it makes no sense at all.

I was reading a post from a 22 year old women on the Tilt Project site under "Gyn Pelvic Exam - I feel violated" - it concerned me.
This woman and her husband were virgins when they met...also, her age - she'd be protected in many countries. The woman was aware enough to decline the pap test because she doubted she'd been infected with HPV (quite correctly)...the doctor refused her the Pill saying, "my malpractice insurance requires a pelvic and pap before I can prescribe BC".
I don't believe that...and if it's true, the doctor needs to fight that and have it removed...it's like saying men must have a rectal exam before they have a flu shot.
She was so distressed by the exam she hasn't allowed her husband to touch her. I hate to read of women harmed by the coercion that is still so common even though the facts are out there...I wish these women who make their point and get up and leave. It's the only way to stop these people, I can't call them doctors.

Anonymous said...

Another question that always comes to my mind concerning all this talk about PAP tests and HPV screening is this: If the HPV virus is sexually transmitted and HPV causes cervical cancer why would someone that has been married for over 30 years and she and her husband have only had sex exclusively with each other even be at ANY risk of HPV??? Shouldn't people be given information regarding the acutal risk as far as possible exposure if they have had several partners versus only one? It just seems like all the recommendations state EVERY woman should get this test every 3 years with no mention of this as a possilbe risk factor. Why is that? Do doctors assume that patients will lie about their sexual history? Do they think all women are jumping into bed with every other man? That's awfully patronizing if it is so. Any feelings about this? Jean

Anonymous said...

Yes Jean that is the reason. The same reason why pap smears are recommended for anyone from the age of 21, virgin or not because the medical profession does not believe that there are 21 year old virgins. Over at the "unnecessary pap smears" blog there is a 21 year old virgin wanting the pill for reasons other than birth contol. Do you know what the response has been when she tells doctors that she is a virgin? "Are you sure you haven't done it just once?" And other similar comments.
Nic

Joel Sherman MD said...

Elizabeth, don't know what you mean by false positive HPV tests. I don't think the test is likely to be in error, but of course nowhere near everyone who is HPV test positive will get cancer.
I of course agree that women are pressured into Pap smears without given the pros and cons to make up their own mind, i.e. no informed consent.
Jean & Nic, some doctors may not trust the history that women give them, but beyond that is the fear that the women's husbands may be cheating, a la the 'sperminator (Schwarzenegger).' No doubt that some women who believe themselves safe have been infected by cheating husbands. That possibility still does not give doctors the right to force women into procedures they don't want.

Elizabeth (Aust) said...

http://www.bidmc.org/YourHealth/HealthResearchJournals.aspx?ChunkID=129255
Here is some information - apparently the liquid pap produces the most false positives, then the HPV test and lastly the pap...but the HPV test picks up the most precancerous lesions. (most of those don't progress anyway) There are also fewer false negatives with the HPV test.
American doctors also pile up and over-use these tests rather than using them conservatively, so it means mass confusion, uncertainty and endless testing when you get a negative pap and positive HPV or the reverse.
Also, as you mention most HPV resolves with no medical intervention - cc is only a rare outcome of HPV infection (plus the other factor that pushes those women to invasive cc)
There are other articles setting out the protocol when the tests "are in conflict".
The HPV test can simply cause more worry, medical surveillance and intervention.

I know Dutch doctors recommend very conservative use of the HPV test (and a self-test kit is available) otherwise the test can cause endless worry and problems.

"No doubt that some women who believe themselves safe have been infected by cheating husbands."

I agree, but that is a matter for the woman, not her doctor. I feel many of these issues are due to doctors assuming responsibility FOR women, rather than treating women as adults free to make up their own minds and that includes assessment of risk. It feeds back to your excellent article - if there is respect for informed consent, then every woman is responsible for her own life.

Jean, I find that so offensive...once again, it's not their place to make assumptions about women. I know the inclusion of women not yet sexually active causes grief at the surgery level and forced testing causes psychological and physical damage. Once again, there should be respect for the individual woman - it is not for doctors to assume women must be lying or have been sexually active by 21. That "rule" also risks the health of these woman - risk for no benefit. In most other countries these women are excluded from testing...it's recommended for "sexually active" women (and you're right there is no respect for the individual woman and low/no risk women or our right to simply say NO to a screening test for ANY reason.)
I know in the article by Dr James Dickinson, "Time to change the Policy" he noted the States included virgins and remarked, "something that surely must be ignored in practice"...yet that's not the case, the forums are full of young women who've been traumatized after being forced/pressured into this testing (often including a bimanual pelvic and breast exam) - some now avoid all medical care and get their meds on the Internet.
Jean, the admission is made by Assoc Prof Margaret Davy & Dr Shorne in "Cervical cancer screening" in "Australian Doctor" 2006 that a woman in a long term monogamous relationship with a history of normal paps doesn't really need testing at all, but that a doctor would be reluctant to so advise because her risk profile might change...so rather than leave that decision to the woman, they carry on with invasive testing and expose her to risk. NOT good enough...

IMO, it is not my doctor's role to make decisions FOR me, accept risk on my behlaf, make assumptions about my life (and my husband's fidelity) - I'm an adult woman and make decisions every day that require assessment of risk. It is also not my doctor's fault if my car runs out of petrol or my husband has an affair. I make the decisions, I accept the consequences.
If honest and complete information were provided and there was respect for informed consent, many of these issues would disappear.

Elizabeth (Aust) said...

Dr Sherman,

You might recall we had a discussion some time ago about HPV testing - if a woman is negative for HPV, what is the point of pap testing? Does the virus lie dormant for years and could it cause issues later on in life?

Most sites and doctors will say if the HPV AND pap test are clear, you can safely wait 3 years before re-testing, although many doctors carry on with annual or 2 yearly testing.

HOWEVER, I found this comment very interesting...made by Assoc Prof Davy, Director, Gyn-Oncology, Royal Adelaide Hospital & Dr Shorne, GP in "Cervical cancer screening" in "Australian Doctor" 2006 - note this was a booklet produced for doctors, not women.

"A purely hypothetical question: if a woman is aged over 30, is in a monogamous relationship, has a negative Pap smear history and no high-risk HPV types on DNA testing, is there a need for her to have Pap smear screening at all?

Despite the negative HPV testing it is important to remember that we cannot make assumptions about her risk status remaining the same. Screening guidelines need to be devised for populations, not individuals, so one would be reluctant to advise her that she could stop screening."

Now what does that say to you? IMO, it's doctors making assumptions about us and our partners - testing us unnecessarily "just in case" with no regard for our rights and health.

Thinking aloud: For women who want to test...

We know pap testing doesn't help women under 30 (this is mentioned in the same article and elsewhere)...so, I assume a woman (if she wants to test) could have a HPV blood test at that age and if negative and she's in a monogamous relationship, she could forget about pap testing? Why would you need a history of normal pap tests, if the HPV test is negative? Women could test again at 35 or 37, if they so desired.

It seems to me over-detection and over-treatment would be greatly reduced if the facts were provided to women and we were free to assess our level of risk and what's best for us, rather than be rolled into one last group.

The HPV blood test is available at a few clinics around Australia, but the Govt and doctors have said they don't think the test (including the self-test kit) is helpful as many young women would test positive for transient and harmless infections (1 in 3) and that HPV has no cure, so the test would just cause worry.

I find that very dishonest as they know pap testing doesn't help women under 30 and causes great harm with 1 in 3 women under 25 producing a false positive. I believe these comments are being made to protect the program. False negatives are apparently very uncommon with the HPV test as well. Some women may see a benefit from HPV testing, if they were asked, given access or provided with honest information.

It makes me wonder whether this program has anything to do with our health. I feel there are much better ways of helping the small number of women who get cervical cancer without worrying and harming the masses.
Have I missed something obvious?

Elizabeth (Aust) said...

http://thechart.blogs.cnn.com/2011/05/18/fewer-screening-tests-for-cancer-may-soon-be-doctors-orders/

This seems to confirm what we've been saying...I feel the recommendation to re-test 3 years after a negative HPV test is about protection for doctors, not women. It's "assuming" all men are unfaithful or women may take a new sexual partner and their risk profile may change...this should be the woman's decision.

A woman could have another HPV blood test 5 years later for reassurance or because her risk profile has changed...

I don't see the point of pap testing - women under 30 don't benefit, but are worried and harmed by lots of false positives.
Women over 30 could test CONSERVATIVELY with the HPV blood test...it would reduce the number of women testing and also cut over-treatment.

Given most countries have heavily invested in pap testing, it will be hard to stop...women will have to demand the HPV blood test or walk away and arrange private testing.

Joel Sherman MD said...

Elizabeth, I agree with you. If an HPV test is negative and you are not sexually active or in a clearly monogamous relationship, there is no evident need for further testing. The woman is better able than her doctor to evaluate her risk and the decision should be hers without any pressure. Always back to informed consent.

Carla said...

Thank you for this information. My friend just had a conization by laser which required an overnight stay after she had a bad reaction to the GA.
I have avoided pap tests because I fear all of these treatments that many of my friends have already had. It doesn't add up for me and I've been unable to get any straight information from anyone especially not my doctor who lectures me endlessly about my reckless risk-taking. She's expecting me to get cervical cancer because I don't test. I'm told not testing makes me high risk, which is untrue. Everyone is low risk because its a rarish cancer and I would be at the low end of low, if that makes sense, one long standing partner who had one prior partner and he always used condoms.
I'm pleased to have found this website.
Finally I have some information, that's all I've ever wanted, more information to explain why many of my friends have had these procedures and all before they've turned 30.
I don't want it to happen to me.

Carla said...

I forgot to mention this means I can't use birth control pills, my doctor says she's unable to provide them without yearly pap tests. I find that frustrating as I've read in lots of places recently that pills and pap tests are not connected in any way.

Joel Sherman MD said...

Carla,
Your certainly not the only one to experience refusal to prescribe birth control pills if you decline Pap smears.
Try copying some articles and sending them to your doctor. If that doesn't work, another doctor might be willing. Good luck.

Hexanchus said...

Carla,

The World Health Organization, FDA (who approve the drugs) and even ACOG, among others, have all officially stated that the pap test/pelvic exam are NOT a prerequisite for hormonal birth control. Tell your doctor this and ask her to provide documentation to justify her statements to you that indicate otherwise.

Better yet, write her a short letter stating that you have extensively researched both the potential risks and benefits, and taking that information and your personal values and risk factors into consideration, you have made an informed decision not to participate in cervical cancer screening. Ask that a copy of the letter be included in your personal health record, and that as far as you are concerned, the subject is now closed and you expect no further discussion or inquiries on the subject.

Include something re: the above about paps/pelvics also not required for BCP if you want.

As Dr. Sherman said, if this is an issue for you, you may need to find another doctor.

Anonymous said...

Hi,

Have a look at this post from a Medical student.(Mike) I assume its true.

Most disconcerting on a number of levels.

Chris

http://www.voy.com/224518/2.html

Joel Sherman MD said...

Chris, I'm not familiar with that forum but voy is filled with fetish posts and I would not assume that the post is true.
The incident as described is very likely to have elicited a complaint, perhaps even a formal complaint to a medical board, so I'm skeptical.

Violet to Blue said...

Hi y'all

very interesting website here by Debora Miranda, who is doing her medical journalism MA on cervical screening. She's asked for people to contribute their experiences etc so some of you may wish to swing into action. She also has a number of articles on the guardian website (UK broadsheet newspaper).

http://cancer-screening.net/

http://www.guardian.co.uk/science/series/cervical-cancer-screening
http://www.guardian.co.uk/science/series/cervical-cancer-screening

rgds Violet

Joel Sherman MD said...

Here's a report originating with the CDC documenting that HPV tests are frequently misused. It states that HPV testing is only indicated in older women over 30. I was not aware of these guidelines.

Diana said...

I feel fortunate to have found this website. I was subjected to a pelvic examination when I went to get a prescription for OC as a young woman. During the exam, the nurse practictioner announced that she would be doing a rectal exam. I told her I did not want that done. Her response was that "it's part of the exam," and she went ahead in spite of my objections.

As I've thought about it since, I have felt more and more angry. I should not have had to leap off the table to avoid a procedure I had objected to, and she should not have proceeded without getting my consent, which I might have been willing to give her had she offered some sensible reason for it.

This episode as well a others have resulted in my feeling a lack of trust for health-care providers, which contributed to my decision to have home births with a midwife. I developed a relationship with my midwife, and I did eventually feel able to trust her with these sorts of intimate examinations.

Elizabeth (Aust) said...

Diana,
I believe your story is a very common one and many women carry some level of trauma through life as a result of their treatment in medical settings. Some women are so traumatized that they avoid all medical care - that is a shocking state of affairs.
I consider myself fortunate to have avoided these experiences - I stayed away from doctors as a young woman and now as an older, informed woman find I have an equal playing field and have no trouble controlling the consult situation.

When I was in my early 20's and looking for contraception, women were also routinely forced into these exams to get the Pill - it was OUT of the question for me and I went looking for an alternative. (almost all of our GP's were amle at this time, but I would not have agreed to these exams even with a female GP) I also did not want to expose myself to risk every year I attended for a repeat or face the same battle. I was shocked to read in the Medical Library that these exams that were forced onto women in exchange for BC, had NOTHING to do with the Pill, were not clinically relevant or required at all. I felt then and still do, that this was giving doctors' a license to assault or take advantage of women. It's shocking that this is still the case in the States and Canada.

That early awareness has served me well. I also believe there are far too many unnecessary intimate exams in pre and post-natal care. Women really need to control these consults, but it can be difficult if you want a particular doctor or wish to use a certain birthing facility. I think some women feel safer giving birth at home and who could blame them - there are some shocking birth horror stories.

My problem with home birth - the fear that I might not have coped with the pain or got into trouble and ended up being transported by ambulance into an emergency department with no control over the situation at all, that would be terrifying. (for me)

How have you managed over the years with birth control? I know it's difficult for US women, with doctors forcing women into all sorts of unnecessary gyn & breast exams plus pap tests in exchange for the Pill - and not only forcing pap testing, something that should be elective, but over-testing....I know many American women now get the Pill over the internet and avoid doctors altogether. Australian women are doing the same thing to avoid the expense and hassle of visiting the doctor - you can get your blood pressure checked at the chemist...also, our doctors also use this consult to pressure women into pap testing - they're rewarded behind our backs by the Govt for reaching pap testing targets - IMO, highly unethical.

The routine breast, rectal, recto-vaginal and bimanual pelvic exams are not recommended in many countries (I've never had any of these exams) - they are of poor clinical value in a symptom-free woman and more likely to harm you.

If you objected to that part of the exam and the NP went ahead, I'd consider that an assault and report the woman. I think some doctors and NP's will have to be forced to see our bodies are not public property or suffer the serious consequences.
I get the feeling that more women are fighting back and that's a great thing.

Elizabeth (Aust) said...

Dr Sherman,
You might be interested to know that the screening age has not been raised yet...even though this has been recommended for many years - our program is seriously out of step with the evidence and many young women are being harmed and stressed by false positive pap tests.
I recently discovered that the Govt and doctors are conducting some research to assess the effectiveness of Gardasil - comparing the pap tests of young women with Gardasil records. This research is only possible in Australia as many other countries exclude young women from their programs for their protection and our vaccination program is also, well advanced.

Of course, no one has asked young women whether they're happy to risk their health to further this research.
I imagine we'll leave the program as it is and continue harming young women until it suits the people running this program.
http://www.cancer.org.au/Newsmedia/Issues_in_the_media/HPVvaccine.htm

Diana said...

Hi Elizabeth,

I was very fortunate that my midwife, who was a very experienced lay midwife when I had my first child, went on to become a certified nurse midwife. During my child-bearing years (I had 4 children over 8 years), she provided all my care, and I continued to see her for well-woman care for several years after the birth of my last child. She prescribed birth control for me, and she told me that as a married (monogamous) woman my risk of cervical cancer was quite low, so I did not need to be screened frequently. At some point, I opted for a cervical cap, which I used for 7 or 8 years without going back for an exam. When the cap finally needed to be replaced, I called her for another appointment, and learned she was no longer doing gynecological care; however, she referred me to another home-birth-friendly CNM, who fitted me for a new cap. That was 9 years ago. I am now past menopause, and will never need another cap fitting. Thanks to this blog, I will happily avoid further pelvic exams and pap smears unless I experience symptoms of some kind.

As an aside: When I first learned I was pregnant with my first baby, I saw an obstetrician. He noted that I had a retroverted uterus and asked me if he could do a rectal exam in order to more accurately determine the baby's likely gestational age. I gave him permission and did not feel traumatized by that experience. I wonder now if the nurse practitioner was also trying to feel my retroverted uterus.

Whatever her reason was, she didn't share it, and there's a world of difference in being asked to tolerate an unpleasant procedure when there's a good reason for it, and being told "this is what I'm going to do to you whether you like it or not." I remain very hesitant to put myself into that sort of vulnerable situation.

Joel Sherman MD said...

Diana, glad you have found this blog useful. It sounds like you have resolved your issues, at least for the present.
Elizabeth, don't know why Australia is so loathe to update its Pap and cervical screening guidelines. Do you have any Australian websites devoted to this issue where you could publicize the controversy?

Here's an article referenced from the UK which seems to state that older women avoid cervical screening because of embarrassment whereas younger women tend to be too busy. Haven't seen the original article but that's certainly not my impression. Young women are often more embarrassed to see gynecologists whereas older women have more commonly gotten used to it. For those who are really uncomfortable with the exam, don't think age has much to do with it.

Elizabeth (Aust) said...

No, there is very little discussion here in Australia. We see an article in the paper from time to time that the Govt is reviewing the program and may move to 3 yearly screening and also, raise the start age to 25. Nothing happens however...we even had the President of the AMA coming out recently and scolding young women for being complacent about screening! He'd know these women can only be harmed and worried by testing - they're making the right decision for their health.

I believe the research is holding up the long overdue changes - they need these young women for research purposes. It's really quite frightening. I tried posting to several sites, but censorship is alive and well and my posts rarely appear, are removed very quickly or the thread is closed for further comments after they post the usual defend-the-program stuff. I've written to a few people and hope someone picks up the issue - I remain hopeful.

The research also shows some of our doctors are testing very young girls...just shocking.

Diana, Pleased to hear you found a way through the healthcare system - sometimes it's best to hang onto a competent, open and respectful doctor/NP etc - they're precious.
Not many medical people advise women in monogamous relationships that they're low risk - they're usually rolled in with everyone else. I'm now fairly sure that women could test for high risk HPV (even using the blood test) and if they're negative, they could forget about testing altogether. If their risk profile changes, they could revisit the subject. Many of these pap tests are unnecessary, IMO...

I'm researching the HPV issue: How many women would test positive to high grade HPV? If it's a high number, (when it's a rare cancer) then we're no further advanced, just lots more worried women. Even if that's the case, at least low risk women might like the reassurance and it might provide them with the confidence to decline further testing.
I think women will have to ask and even demand, I doubt these options will ever be offered - it's easier and more profitable to keep testing everyone.

Dr Sherman, I don't believe the "too busy" line. I think many women find pap tests invasive, painful, humiliating, uncomfortable, upsetting, violating etc, but don't feel they can say that...we've all been told for years that we're "silly" to let these things get in the way of a "life-saving" test. Many women find it easier and more acceptable to others to simply say they've been too busy to test.

Joel Sherman MD said...

Here's an article from the Journal of Women's Health giving detailed reasons why annual pelvic exams in asymptomatic women are not needed. The tide of opinion is clearly changing. I'll put this in the links.
Here's a current article by a women physician that summarizes the case.

Anonymous said...

I would just like to say thank you so much for maintaining this blog. I had no idea that these exams were not required so much in other countries.
I am 19, almost 20 and for the past few years (yes, I was required to get smears even when I was a virgin. I didn't even think there was anything wrong with this until now!), my OBGYN and her nurse have been pestering me about getting the Gardasil vaccine (I have had many friends who have had very adverse reactions to this, which she dismissed immediately saying they were unrelated- unbelievable!), which I have always, always denied. I never get any shots unless they are specifically required to go to school or get a job. After my last pap smear, I get a call from her saying that I need a biopsy because she thinks it's HPV.
From my understanding, pap smears do not test for HPV, there is a separate test for this which I did not do.
I smoke occasionally which can lead to a false positive, and I had intercourse a few hours before the exam (nobody had ever told me it would affect the exam results), which can also trigger a false positive. Keeping both of these in mind along with the fact that I have only been with two people, ALWAYS with protection how much of a risk am I at? Very little, I would think.
Also, from my understanding, most people who get HPV have it taken care of by their immune system.
At this point I just feel antagonized by my doctor, which is the last thing one should feel.

But after reading some of the conversations, I feel more empowered and I'm going to present all of this information to my doctor. I don't see why we should jump straight to a biopsy when all of these factors (my age, smoking, and intercourse before the exam) could skew the results.
So thank you very much, Dr. Sherman and those who all have participated in this.

Elizabeth (Aust) said...

Anon,
In most countries you'd be protected from testing - there is no benefit testing women under 30, but there is evidence of harm with young women producing the most false positives which can lead to potentially harmful over-treatment.
In "Cervical cancer screening" in "Australian Doctor" July 2006 by Assoc Prof Davy and Dr Shorne, (online; a dowload) you'll find it in black and white:
"No country in the world has shown a decline in the incidence of or the mortality from cervical cancer in women under 30, irrespective of cervical screening".
Angela Raffle, UK screening expert has shown with her research the high risk of a false positive in women under 25 - 1 in 3 tests will be "abnormal" - yet cc is very rare before 30 and testing doesn't change the very small incidence/death rate anyway (these women tend to get false negatives)
So...
Why is your doctor even testing you at your age? Even the US guidelines say no testing before age 21, and that's for your protection.
You're very wise not to rush into a biopsy - my advice: do your reading and challenge your doctor - don't do anything until YOU'RE satisfied it's necessary.

Joel Sherman MD said...

Glad you've benefitted from this blog, anon.
I can't give personal advice as to how you should proceed, but I would agree that you appear to be at very low risk.

Joel Sherman MD said...

We have talked a bit about comparing how breast cancer and prostate cancer are handled in this country and how women and men react to it respectively.
Here's a good article going over the stark differences. No one would say that the publicity that breast cancer receives is misplaced, but it is amazing how prostate cancer is ignored both by the media and by men.

Anonymous said...

In Australia cervical cancer receives about as much funding as breast cancer and we all know how rare cervical cancer is. I don't know about the funding for prostate cancer but I cam tell you bowel cancer here receives about a quarter of the funding of cervical cancer - a common cancer that affects men and women.It seems that funding is not tied to how many people it affects which I think is unethical. To achieve the greatest good for the greatest number of people,most funds should be allocated to the most common cancers.
Dr Sherman thank you for this site. I cannot understand why there are so few honest doctors and forum moderators such as yourself around. I and many others from the blogcritics site "unnecessay pap smears" cannot comprehend that referencing facts from peer reviewed medical journals results in our posts being consored. And yet abusive and inaccurate posts are stay on forums.
Nic

Elizabeth (Aust) said...

Dr Sherman, things are hotting up in the UK thanks to Prof Baum - he and others plan to take legal action against the NHS for failing to obtain informed consent from women before breast screening.
This comes on the back of recent research that showed that better treatments are behind the fall in breast cancer deaths, not screening.
Screening may be risk for no or very little benefit.
This is a very positive step forward - the research has been played down here in Australia where Breast Screen are pushing to meet a 70% target for breast screening women in the target age range, 50-69. The research has been mentioned in the paper with a pro-screening person having the last word.
IMO, the same criticisms could be made of Breast Screen...
http://www.guardian.co.uk/commentisfree/2011/aug/02/breast-cancer-screening
http://www.bmj.com/content/343/bmj.d4411

Joel Sherman MD said...

Thanks Elizabeth.
Here's the link to the original article.
I have to look through it. It's not clear to me how the cases of breast cancer would be identified if mammography was to be abandoned. I'm sure the article clarifies the point. What is the alternative to regular screening?

Elizabeth (Aust) said...

I think sometimes we have to accept the "find it early" message is just not possible, without harming lots or achieving very little. (if anything)
I've adopted "breast awareness" - simply taking note of any changes (visually) in the mirror every morning after showering. This method was devised by Dr Joan Austoker.

This method doesn't lead to as many excess biopsies and doesn't create the anxiety that was associated with breast self exams.

Clinical breast exams - I couldn't find anything supporting them (anything unbiased), but found evidence of harm - biopsies. An Australian study also cast doubt on their benefits, even though some of our doctors will tack them onto a birth control consult and some women ask for them because they've read in womens' mags and elsewehre that they're necessary and helpful. Or, their doctor has always routinely examined their breasts and so the practice continues.

Kosters, JP & Gotzsche, PC, "Regular self exams or clinical breast exams for early detection of breast cancer", Cochrane Databas Syst, Rev 2003; (2) CD 003373

http://eprints.jcu.edu.au/5884/

I've never used a doctor for contraception and so the question of breast exams has never arisen. I only permit evidence based exams and so when it was recently offered as part of a check of my cholesterol levels, I declined - my GP could not produce anything recommending them anyway - not even the GP's Red Book recommends them in asymptomatic women.

I haven't researched other methods - like thermal imaging etc - I'm content with "breast awareness" and I'll report any changes to my GP.
It's a hard Pill to swallow for many, especially those who've spent their lives being over-examined and over-tested, but IMO, sometimes there is nothing we can do to "catch it early". It's funny that we all feel like we should be doing "something", when my grandmother's generation always relied on symptoms and would have been shocked at the thought of going and looking for trouble.

I do plan on looking at alternatives to mammograms, CBE's and self-exams when I have some time. I notice the thermal alternative and ultrasounds are being pushed more - I hope women don't jump on board without having a close look at them - it might mean more biopsies or worse! Although Breast Screen have always been vigilent discrediting these alternatives and pushing mammograms.

Joel Sherman MD said...

Elizabeth, after skimming the full paper, I understand its point, but I still don't see much effective alternative to screening mammography. That assumes mammography has continually updated guidelines. Breast awareness may work for a highly motivated person like yourself, but I don't think it's the answer for everyone.

Here's a recurrent story, men are refused financial aid for treatment of breast cancer because they don't meet federal guidelines.

Elizabeth (Aust) said...

Surely we must reach a point when we say enough is enough - if the evidence keeps showing mammograms are harm for no or VERY little benefit, can we ethically keep screening women? Even if some women would choose to screen regardless, is it ethical to test them knowing it can only harm? We may not be quite there yet for some people, but I think the margin is closing...and fast.

I also think the threat of being sued may become a major concern in the UK, with more women becoming informed. That will change attitudes very quickly, if sufficient numbers take action.
It will be interesting to see what comes of the legal action against the NHS in the UK.

Most women who test are unaware of the actual benefits and risks - but more are finding out the test is controversial (even here) - we may see a fall in the number of women testing and when scare campaigns don't work, that may eventually prompt a scaling back of the program.

When you consider the millions spent on these screening programs while other areas in medicine are neglected and many more lives could be saved or improved, IMO, it shows the power of profits, politics and lobbying.

I would have thought the costs associated with all the false positives in cervical screening would be a major issue (if more people knew about it!) - many will say we can't put a price on human life - fair enough - but we can scale back the program to minimize the harm to healthy women very easily - take out women under 30, those who've never been sexually active, (in the States) women over 50 or 60 etc - basically the things that have been suggested by Angela Raffle over the years. It really is scandalous to spend so much on groups who won't benefit, but can be harmed. That's not healthcare.
Also, harming most to help very few is unethical and should never be the subject of population screening.

I find it concerning that because we have a program and all the systems are in place, some have turned off their minds to new evidence - they'll keep going regardless, until they're forced to stop.
I was reading that the former editor of the BMJ was having trouble finding someone to debate the pros of breast screening (he has someone for the con side of the argument!) - it seems they're tired of going over the same ground - how arrogant and lazy - to think they don't even feel obliged to justify the program in light of increasing evidence of harm for no or little benefit. They are intrinsically right...I guess they're used to making statements without providing proof and rarely being challenged...the UK is really the only country that has quite a few highly visible advocates for informed consent in cervical and breast cancer screening.

I also think the screening brochures should be drafted by the NCI (or someone independent of the programs) and be adopted worldwide - it's ridiculous to allow the screening authorities, the protectors of the program, to draft the brochures - they don't want to inform women or do anything that may jeopardize THEIR interests.
The margins with cervical screening are so tiny, they'd never give up their control - they need numbers, and big ones at that...informed consent would clearly threaten the program.

Anonymous said...

Elizabeth do you mean the Nordic Cochrane Institute when you say NCI? The proscreeners are so arrogant that on a forum debating breast cancer screening where I linked a Crochrane brouchure spelling out the pros and cons of breastscreening, one proscreener dismissed the Cochrane Institute of "manipulating figures" and being misleading. They also tried to destroy the credibility of my link by patronisingly using inverted commas on my "reputable site". I was unable to counter reply but if people reading it didn't know who the Cochrane Insitute are they would have been lead to believe that they are not credible. It seems that proscreeners know no bounds and blantant lies are totally acceptable to get women to do what they want.
Nic

Elizabeth (Aust) said...

Yes Nic, the Nordic Cochrane Institute - a respected independent research and information centre that critically reviews medical and scientific research.
One of the problems with screening, well..there are a few, but one that has always annoyed me is that the ONLY official information most women receive is drafted by the very people with the responsibility of protecting the program and reaching targets - they have a vested interest, a conflict of interest and that's why we get a one-sided account of screening and I would say, a biased, pro-screening account.

If someone has never heard of the NCI, they haven't really researched the topic in any depth - they are my starting point now - they critically review ALL of the evidence, not just the stuff that supports an agenda. Big difference...
I think every woman should receive their summary on breast screening...of course, pro-screeners are always appalled at the suggestion that women should be given the facts and left to decide for themselves.

We hear the usual line that, "we're concerned that women reading that might skip screening and sadly, we'll see deaths from breast cancer rise"...it misses the point totally. I don't need or want any doctor or screening authority presenting a one-sided distorted view of screening and "taking care of me", making decisions for me and accepting risk on my behalf...that is MY responsibility.
Screening carries risk - I need ALL of the information available to decide whether screening is right for ME.

http://www.cochrane.dk/

Joel Sherman MD said...

Elizabeth, as you know I fully support the right of every woman (or man) to make their own choice, whether it is fully informed or not. But fully informed is better.
Breast cancer is a major killer of women and everyone should be aware of that. Whether you choose to self examine only or to get regular mammography is your decision, hopefully guided by your own personal risk factors.

Here is the link to the Nordic Cochrane Institute and their mammography study. Here is the authors' conclusions:
Screening is likely to reduce breast cancer mortality. As the effect was lowest in the adequately randomised trials, a reasonable estimate
is a 15% reduction corresponding to an absolute risk reduction of 0.05%. Screening led to 30% overdiagnosis and overtreatment,
or an absolute risk increase of 0.5%. This means that for every 2000 women invited for screening throughout 10 years, one will
have her life prolonged and 10 healthy women, who would not have been diagnosed if there had not been screening, will be treated
unnecessarily. Furthermore, more than 200 women will experience important psychological distress for many months because of false
positive findings. It is thus not clear whether screening does more good than harm. To help ensure that the women are fully informed
of both benefits and harms before they decide whether or not to attend screening, we have written an evidence-based leaflet for lay
people that is available in several languages on www.cochrane.dk


As always, thanks for posting and keeping me on my toes.

Elizabeth (Aust) said...

Absolutely - I'd be a happy woman if every woman received the leaflet prepared by Nordic Cochrane Institute, rather than the shameful excuse for a screening brochure they currently receive...but it won't be happening anytime soon.
I imagine the NCI leaflet will be revised to include the latest study.
Thank you for your amazing contribution to the subject and providing a rare forum for very candid discussion.

Joel Sherman MD said...

To nobody's surprise, a newly released study documents that women are still over screened for cervical cancer. I'll look at the original article when I can.
But it's very encouraging that this subject continues to be studied and get more publicity.

Elizabeth said...

Cervical screening is a juggernaut in the States and it won't be easily turned around...also, when you mislead women over decades, they make bad decisions. Reading through health forums it concerns me that so many women focus entirely on pap tests when they're talking about health care. I'm sure many of these women are still demanding annual pap tests, convinced the winding back is about health economics or savings for insurance companies.

Cervical cancer is such a small risk (even for a high risk woman), it's crazy to give it such a high profile when there are so many other things that will get us first, and other things we can do to greatly improve our overall health - like exercise and diet.
It must frustrate you that heart disease remains on the back burner, yet it's the No 1 killer of men and women.

Diana said...

"Screening is likely to reduce breast cancer mortality...a reasonable estimate is a 15% reduction corresponding to an absolute risk reduction of 0.05%."

My question is whether overall mortality is reduced. I have read elsewhere that it is not due to the harmful effects of overtreatment. Does anyone have reliable information on this?

Diana said...

As a follow-up to my previous post, here is an example of a post that states that all-cause mortality has not been reduced by mammography:

http://www.thennt.com/blog/2011/08/on-our-lung-cancer-ct-scan-nlst-trial-numbers/

Note the following in the 3rd paragraph from the bottom of the post:
"For screening mammography ‘death due to breast cancer’ was accepted as an outcome in early studies, and it was a mistake. The only outcome that should have been accepted was ‘all-cause mortality’, or overall deaths in each group. Now we’re paying the price: despite massive increases in use of mammography, and what looked like promising study results there haven’t been associated reductions in breast cancer deaths. But all along there was never a benefit in the only truly unbiased outcome, all-cause mortality."

Elizabeth said...

Diana, It seems like a case of "those in the know" and "others"...frank articles are usually locked away in medical journals, well away from most women.
There are very frank discussions about risk and/or lack of benefit, yet no one seems to think women have a right to know, because it might "put them off" and "jeopardize the programs". (reaching targets)

It seems once the money has been spent, we're stuck with bad and harmful programs - it becomes a Q of those aware enough to modify the program, to reduce risk or those who decline to screen and get away with it, usually because they're informed and a clear match for any doctor or screening authority.

I've been frustrated for a long time now at our continued pap testing of young women. I was horrified to read some time ago that it caused lots of harm for no benefit. What were we DOING?

Then I was reading a handout for doctors "Cervical cancer screening" that appeared in "Australian Doctor" (July 2006) by Assoc Prof Davy (who is the Director of Gyn-oncology at Royal Adelaide Hospital) and Dr Shorne;
It said:
"No country has reported a reduction in the incidence of or the mortality from cervical cancer in women under 30, irrespective of cervical screening"...

There was no further explanation because I assume all of the readers were aware of this fact - doctors "in the know".
Yet the AMA recently made a press release warning young women not to be complacent with pap testing!
Pap testing can only harm and worry young women - so what is this screening really about?

I then read an article by Dr Margaret McCartney in the BMJ, "Doctors should not support unethical screening"...
You'd think that would be stating the obvious....
Doctors should put their patients first and respect informed consent, they should not be aiding and abetting these programs.

http://www.margaretmccartney.com/blog/?p=1081
This will take you to the BMJ - take the time to read the Rapid Responses.

The article by Davy and Shorne also suggests many women could forget screening, if they're 30 or more, negative for high risk HPV and in a monogamous relationship or no longer sexually active - once again, something never mentioned to women because IMO, it would threaten the program....those "in the know".

Phoenix said...

I'd like to bring up yet another point about womens privacy. I'm a regular poster from the Blogcritics Un-neccessary Pap Smears Blog. I've been a regular lurker on this privacy blog - Dr Sherman, thank you so much for allowing us all to share our thoughts and complaints.

This week, I needed simple anti-fungal cream for a regular case of thrush, and I know how badly women are talked down to when we enter the local pharmacy to get some!

Nearly all pharmacies refuse to hand over something as simple and regular as thrush treatment cream without demanding that you answer a series of invasive and very personal questions. Questions that are being asked by someone who is not a nurse or a doctor, AND being asked in public. The treatments are kept behind the counter, and won't be handed over unless the pharmacy agrees to - and that is a whole problem in itself.

To me, this smacks of 'women don't know how to handle their own health, they can't be trusted, and others must make decisions for them'.

I asked for my thrush cream and refused to answer their questions. Imagine a woman refusing to answer questions from a total stranger about her vagina!

After ten minutes of me refusing to divulge personal details to the persistant and accusatory pharmacist staff, they reluctantly handed a over a small tube of anti-fungal cream. They had been threatening to NOT sell me the cream unless I answered all of their questions (they kept verbally repeating that they don't sell the cream to anyone unless they get answers to their questions), but I refused to give ground over the issue.

I sent an email to the head pharmacist, challenging him that I should be able to buy a tube of anti-fungal cream for a known condition which is simple to treat, without being treated like I had NO SUCH RIGHT to do so.

His condescending and patronising response was that by 'law', he had the right to ask personal and intimate questions, and that it was his responsibility to decide - and inform me - of what treatment I SHOULD be having, and will be given.

To say that I'm frothing at the mouth over such disgusting behaviour is an understatement.

Thrush is not a dangerous or hard to treat condition. While it can sometimes be a sign of something more difficult or serious, in the majority of cases, it isn't. Most women will get thrush one or two times a year, and subjecting any woman to such a blatant grilling and potential denial of treatment is pretty degrading and disrespectful.

I'm not saying that this particular pharmacist is outstandingly evil or abusive, because sadly, nearly all pharmacists act the same!

The act of coloring my hair at home is many times more dangerous and toxic than using thrush cream on my priate parts, yet I can openly and freely buy it without being treated like an un-intelligent rogue female consumer who is refusing to toe the line.

I am thinking of challenging the Australian Pharmacists Guild over this issue (women treated like air-headed little girls who need to be hauled into line over the topic of thrush). Any thoughts?

Joel Sherman MD said...

Never heard of anything like this, Phoenix. Is it only in Australia? Don't know of any similar situations in the USA where pharmacists are legally empowered to proscribe drugs which I assume are otherwise over the counter.

Phoenix said...

I have no idea if it happens in other countries or not, but it's been happening ever since I can remember in Australia. I'm 37 years old. Of course, I think most women would have no problem with giving a pharmacist the answer to anything they wanted to know, and wouldn't think twice about it. It is my personal life experience that is making this a big problem.

Like many other posters here, I've had abusive and bad experiences with the medical profession in general (denail of treatment for extremely heavy periods that led me to consider suicide as the final solution after twenty years of it) and over the past few years I've become very wary and sceptical of anyone (medical or otherwise) who tries to invade my privacy or deny/force treatments on me.

I get thrush two or three times a year, and I've had enough of the questions that pharmacists want answers to. I honestly do feel that they see thrush treatments as an easy target to corner women over, and get controling and invasive about.

In case you're wondering, the questions usually asked are;

- What are your symptoms?
- Why do you think it is thrush?
- Has your doctor diagnosed your problem as thrush?
- How many times in the past year have you had thrush?
- What medications are you on?
- Have you taken antibiotics for any other condition recently?
- Do you have diabetes?

I've also been asked on-and-off,
- Do I have any known gynaecological problems?
- Have I ever been diagnosed with an STD?
- Have I ever had urological problems?
- Am I sexually active?

As I said before, I've been threatened with refusal to sell me anti-thrush cream unless I answer the questions and tell them what they want to know.

The pharmacy staff asking the questions are just that - the staff. They have NO medical qualifications that I am aware of. and are certainly NOT a doctor or nurse. Each pharmacy (we call them chemists here, I'm not sure what the USA term is!) has a Head or Senior Pharmacist with a qualification, which is usually a degree, and they stay behind the counter at the back of the shop dispensing actual scripts. They come out if there is 'a problem' or a specific question.

I keep changing which pharmacies I use for my thrush treatments, because I'm constantly having run-ins with each one about getting a thrush cream without being forced to answer questions. It is a horrible and unjustified situation that I feel is totally wrong.

I try to be as civil and polite as I can, and I have pointed out each time to the chemist that I have no worries with them offering advice (which I will gracefully refuse), and they can quite reasonably ask if I have any questions, but demanding that I answer THEIR questions, and being faced with their refusal to sell me a non-prescription, non-toxic, non-dangerous drug if I don't? That is insulting, condescending and morally wrong.

Joel Sherman MD said...

I have now reviewed the original article from the American Journal of Ob-Gyn, August 2011, available only online thru services. To review, the article studied the appropriateness of physician and provider recommendations for repeat cervical cancer screening. It looked at gynecology practices and family/internal medicine practices. In all categories their failure to follow current recommendations was abysmal. On the average only about 15% got it right recommending repeat screens in 2-3 years. All the rest wanted annual or earlier screenings. As in one prior study, gynecologists fared worse than general practitioners. This study looked at both Pap smears and HPV tests.
It's hard to hypothesize a benign explanation for the failure of gynecologists to get it right. The vast majority of them must know the current recommendations. Possibly they serve a population that not only has come to expect annual exams, but demands it. But they are still failing in their responsibility to educate patients about the tests.

Anonymous said...

Was there an information on informed consent? And what about the risks vs.benefits of screening in general?

Joel Sherman MD said...

No anon, the study didn't look at either issue. The only question studied was when they recommended repeat screening.

Elizabeth (Aust) said...

It keeps coming in the UK:
http://www.dailymail.co.uk/health/article-2032448/Mammograms-NOT-cutting-breast-cancer-death-toll-despite-100m-year-bill.html

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.

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.

Joel Sherman MD said...

THIS THREAD IS NOW FULL. PLEASE CONTINUE POSTING ON Part 7.

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