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    Why I Am Not Having A Screening Mammogram
    By Natalie K Björklu... | June 7th 2011 08:34 PM | 57 comments | Print | E-mail | Track Comments
    About Natalie K

    Ph.D. in Human Genetics from the University of Manitoba. Her Ph.D. concentrated in Genetic Epidemiology, particularly of normal variants of genes

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    Conventional Canadian wisdom suggests that all women should have a screening mammogram starting at age 50 (age 40 in most of the USA). The reason given is that mammograms detect cancers earlier, while it is still possible to treat them. Instead of dying of cancer, you can be a “survivor”. It’s a powerful message preying on the fears of women and their families. October is “breast cancer awareness” month and the promoters of screening mammography were out in full force when I got the telephone call to come in and get my first mammogram. I left their message on my machine to think about it.

    As I was thinking about it, I even heard one of these mammography cheerleaders talking on television. As I flipped through the official provincial literature on the topic, she said that anyone who publishes studies that do not support mammograms must be working for an insurance company that doesn’t want to pay for mammograms. She has concluded this because everyone “just knows” mammograms work.

    I have long been highly skeptical of what the medical community tells me must be done to me for my own good. It began when I had a doctor tell me I had to consent to a routine episiotomy with the delivery of my first child in 1981. The doctor told me that having him cut open my vagina was much better than letting me tear a jagged mess on my own. Furthermore, by consenting to having him slice me open, I would heal faster, would spare my baby’s head, have less chance of damage to my anus, and result better sex in future for my husband. (He made no mention of my pleasure, that apparently being irrelevant.) As a bonus, the procedure would prevent my uterus from falling down into my vagina as an old woman. Routine episiotomy was the standard of care in North America in those days. I am certain that my doctor sincerely and honestly believed he was doing the right thing for his patients. Unfortunately he was wrong.

    Subsequent (and long overdue) studies have since shown that routine episiotomies were worse than just an unfortunate fad. Routine episiotomies actually cause or make worse the problems they are supposed to prevent during delivery. There have been no studies at all to justify statements like preventing a woman’s uterus from falling into her vagina. All those women who had their vaginas sliced open in the name of prevention were basically subjected to a well-meant form of ritual genital mutilation. I took a lot of flack from my doctor after telling him I was unlikely to consent. It was soon obvious he was planning on cutting me anyway, consent or no consent. He was the doctor, I was the mere patient. He just knew what was best for me and my baby. He was not going to put up with any foolishness from me.

    At 36 weeks I found a non-North American trained doctor who actually knew how to attend a normal delivery without slicing open the mother's perineum. I had a very nice birth with an intact perineum as a bonus. The other women in the maternity ward all shuffled awkwardly sideways down the hall and spent their time with perineal sprays, and painkillers sitting on inflatable pillow rings. I got to concentrate my energy on fighting with the staff about stupid hospital regulations that were interfering with my choice to breastfeed. I was the only woman in the hospital who had this crazy idea of actually using my breasts to feed my baby.

    The whole routine episiotomy debate later broke wide open and it turned out I was right1. Since then, whenever I hear I should submit to something for my own good, especially when my intuition tells me otherwise, my hackles rise. When I am also told my doctors know better than me just because they are doctors, I get spitting angry. I then run to the medical literature to look for myself. I have a Ph.D. in Human Genetics and my specialty is genetic epidemiology. I am not a medical doctor, but I know how to read the medical literature for myself, especially those big epidemiological studies. And my training in statistics and epidemiology far exceeds that of the average physician. I know because I often tutored them in these topics.

    Usually, after I read carefully for myself, I find my doctors do indeed know best. For example, I thought I should have a routine screening colonoscopy at age 50 but my doctor said I should instead do the occult blood test and avoid the risks of a colonoscopy2. I read up on it and decided she was right. Nonetheless, my personal experience suggests the more emphatic the medical rhetoric in favor of a routine procedure or a routine screening test, the more likely it is that the evidence is not there to support it. Because the evidence is not there, patients ask a lot of difficult questions.

    The medical profession as a whole has found that the best way to silence uncomfortable questions is to bully patients until they stop asking them. I hear a whole lot of rhetoric, hysteria and name calling about routine mammograms directed at patients who question them and at professionals who wonder what we are doing. I have not heard a lot of substantive debate. This is a red flag warning to me.

    The whole breast cancer issue first came into my consciousness at the age of 8 when a family member found a small lump. The treatment in those days was a double radical mastectomy. I recall my mother saying there was a surgeon in Montreal, educated in Europe, who was doing lumpectomies instead of double radical mastectomies. My relative decided she would have the biopsy in Saskatchewan and go to Montreal for treatment if the biopsy came back positive. Her surgeon reluctantly agreed. She went under anesthetic having only consented to a biopsy. She woke up with no breasts. The surgeon made the decision for her, against her specific instructions, while she was unconscious. A vibrant beautiful woman in her thirties was left disfigured. She could no longer raise her arms above a 450angle. She was horribly scarred. She suffered the rest of her life with pain and swelling from poor lymph drainage. The surgeon who disfigured her was absolutely convinced he was saving her life and she was being foolish and hysterical. He felt he had an obligation to save her in spite of herself and so he ignored her specific directives and cut off her breasts and most of the tissue under her arms. Yet today, the lumpectomy she wanted is now the procedure of choice with no worse outcome than the double radical mastectomy.

    My Ph.D. in Human Genetics included a lot of training in the pros and cons of screening tests. The value of screening tests is measured by four important criteria. These are the risks of taking the test itself, false positive and false negative rates, and treatment options for those who screen positive. A false positive means the screen test finds something might be wrong when in fact everything is fine. A false negative means the test assures us all is well when in fact there is a problem. The risks of taking the test should not be higher than the risks involved in getting the condition the test is designed to find. Finally, if the test does find something, there should be something you can do for the patient.

    A good example of a test that is low risk screen test that is considered to have a high false positive rate by many in the field is maternal serum prenatal screening tests for birth defects like anencephaly (where the baby is born without a brain) or genetic disorders like Down Syndrome3. Taking the screening test involves a simple blood test for the mother to measure certain substances in her blood. The levels indicate the baby's health. The test itself is almost no risk because it is just a blood test. The risks are maybe some bruising and a almost zero possibility of an infection at the vein where the blood is drawn. The other risk is the emotional upset that goes with having a positive result and the fear and worry that something is wrong with the baby until follow up tests can be done. The false positive rate on these prenatal screen tests is high, about 5% of all women who take the test. Most women who get a positive result end up going in for an ultrasound and most of these women find out their baby is perfectly normal. The calendar delivery date turns out to be wrong or they discover they are expecting twins. A few women with positive screen tests will then be offered riskier tests, such as amniocentesis, which has a 1/200 chance of causing the death of the baby. Many women who would have been considered high risk because of their age, will have a normal blood screen test and decide to skip the riskier test. Rarely, a result of serum screening will be they discover their baby is not normal. Most women have the prenatal test. If they have the rare misfortune of discovering, on ultrasound and amniocentesis, their baby has, for example, no brain, they will choose to terminate the pregnancy.

    However, I know a woman who is an Orthodox Jew who would never have an abortion no matter what was wrong with the baby. She had a false positive result in her fourth pregnancy. Even after the ultrasound was normal she worried and fretted all the way through the pregnancy until the baby was born. The baby was fine. She told her doctor not to do the standard screening blood tests in her fifth pregnancy because she would not have an abortion and she didn’t want to spend half her pregnancy worrying again. She would prefer to not know until the baby was born. She wanted to be able to enjoy the pregnancy while assuming all was well. Her choice was not the same choice as most women. Nonetheless, her choice was an equally valid choice. It was therefore the right choice for her.

    Prenatal serum screening is a good screen test with low risk to the mother and baby. Can we say the same about risks and false positives for mammography? Not really. Serum screening in pregnancy is a blood test. When screening mammography is done, it involves a dose of radiation. Granted, it is a small dose, but it is still a dose. How many cancers are we accidentally causing withall these doses of radiation? We simply don’t know. We do know that somewhere in the range of about 5% of the general population is carrying some defect in the repair enzymes that fix radiation damage to the DNA. There is no one real good answer about how many cases of cancer we cause by the radiation required for a mammogram and if it only in those with variant repair enzymes. Proponents of mammography assure us the number of cancers caused by mammograms is exceedingly small and far less than the number of cancers caught early enough to save lives. The best figure is 48 lives saved from breast cancer by mammograms for every life lost due to cancer caused by mammograms4.

    Those against mammograms quote figures far lower than that. The only thing everyone agrees on is we are not at zero. There is even some concern about the compression of breasts for mammography being not just uncomfortable to painful, but maybe even dangerous. The evidence is theoretical and proper studies have not been done to prove or disprove this but, in theory, compressing the breasts may burst small blood vessels around small cancers and cause them to grow and spread5. If we had a clear benefit and we knew exactly what the risks were, we could decide the test to be worth all these risks. Right now, we just don’t know. The studies have simply not been done.

    We do know the false positive rate for screening mammographyis very high. A recent study from the New England Journal of Medicineconcluded that one out of ten screening mammograms gives a false positive. This means if you start having an annual screening mammogram at age 40, you will have a 65% chance that you will to go through the whole mess of being told they found something that isn’t there by the time you are 50. What about the follow up required for a false positive? In serum screening in pregnancy the next test is ultrasound which almost everyone agrees is harmless to mother and baby. What about mammography? Well first there are more x-rays creating more risk of radiation induced cancer. Needle biopsy may be spreading cancers that otherwise would not have spread. Surgery is a common result of a false positive and that is also not harmless and low risk, especially if the woman has to have a general anesthetic. I have not even yet mentioned the enormous psychological toll a positive screen can cost a woman and her family. When was the last time someone talking in breast cancer awareness month on television discussed the false positive rate and the risks associated with it?8

    The second measure of a good screening test is the rate for “false negative”. For a cancer screening test, a “false negative” means the test says there is no cancer when, in fact, cancer is present. There is a blood test called prostate specific antigen (PSA). In many forms of prostate cancer, this antigen is elevated and measuring the level can be used to see how well a treatment is working to stop the cancer or test if the cancer has come back. Because of this, PSA was once suggested as a possible screening test for prostate cancer. However, this test has a high false negative rate meaning it often suggests no cancer is present when cancer actually is. If a man skips the unpleasant digital exam (which is a much better screening test) because the blood test is negative, the blood test has made things worse for the man not better. This blood test is no longer recommended as a routine screen for prostate cancer except when used with other screening tools, especially the finger-you-know-where prostate exam7.


    For breast cancer, there are many studies, some good, some not good, on false negatives and the figures are astonishingly bad in light of all the hype for mammography. Overall, up to 10% of women who have confirmed breast cancer had a previous screening mammogram and were told everything was fine. The really good studies using large groups of women and following these women over a long time period of time have shown that the false negative rate for mammograms for women between the age of 40 to 50 is so high (>30%) it’s just not worth the test.

    That’s why many countries, like Canada, will simply not pay for screening mammograms for women with no risk factors until they are 50 years old. After age 50, screening mammograms do show benefits in the form of reduction of death rates for a specified number of years after age 50. The false negative rate for mammograms is tied to how x-ray opaque the breasts are and the older one is the more translucent the breasts are. Most professionals agree on offering screening mammography for all women 50 and over. There’s nothing really magical about 50. It’s just a nice round number when most women have started menopause and their breasts have changed to translucent enough to actually get a mammogram a radiologist can see something in, if it's there to be seen.

    The third and most important measure of the value of a screening test is what kind of treatment can be offered. I have my doubts about our cancer treatments for breast cancer. There was a study in Denmark done on women who have died of other things like car accidents. It was a small study but they found 19% of women had small breast tumors. Yet 19% of women in Denmark don’t die of breast cancer9. Obviously, some of these cancers simply lie quietly or the body cures itself. These are called ductal in situ carcinoma or DCIS. Since we don’t know which ones will spread and kill, all of them are treated. I really wonder about our “cure rates”.

    How many of the women “cured” of their early cancer would have never developed the disease if no one had discovered they had cancer with a routine screening mammogram? How many women have gone through surgery, radiation, and chemotherapy but didn’t really need it? How many women went through all that and it did them no good and they then died of breast cancer anyway? It seems to me that even if mammograms find early cancer, the odds are better than 50:50 it would have just gone away by itself no matter what women let the doctors do to their bodies. The Danish study is a small one and needs to be confirmed by a very large proper study but I can’t just ignore that data. If we are catching breast tumors earlier, when they are treatable, using screening mammography, then logic dictates we should also be seeing more small earlier tumors and less bigger later tumors. Unfortunately we aren’t. Why not?

    Sometimes the treatment for the condition is so horrific it’s just not worth knowing. When a prostate exam comes back as positive and cancer is found, a man then has a series of choices to make. A lot of prostate cancers will simply lie dormant for decades and never leave the prostate and never cause death. The treatment of removing the prostate often leaves a man impotent and incontinent. Should a 60 year old man, for example, choose to have his prostate removed and have a high risk of ending up unable to enjoy sex and having to wear diapers the rest of his life when the cancer might just have sat there for twenty years? Many men would prefer to do nothing and just have their doctors monitor the prostate. They would only choose to have the prostate removed if the cancer seems to be spreading. Other men might find they worry so much about the cancer they prefer knowing the prostate is gone even if means being incontinent and impotent. Both choices are considered valid choices for men to make.

    And this brings me to what I find most disturbing about the entire mammography debate. I never hear talk of choices for women. The promoters of the routine screening mammogram only discuss those cases of women who had a cancer found early, had it treated and survived for a certain amount of time afterward, five to ten years being the common time period looked at. A woman may suffer the rest of her life from the treatment of her cancer but she is nevertheless counted as a success. She may have undergone treatment for a cancer that wouldn’t have killed her anyway but she is still counted as a success. The women who had her chemo, radiation, surgery and lived five years only to have the cancer reoccur and kill her in year six also gets counted as a survivor for the five year studies. She survived. No one asked her if her quality of life made survival worth it. She made the five year mark even if the cancer finally killed her. Was she really better off for having gone through everything but dying of cancer anyway? Maybe the treatment did give her five extra years. But do we really know for sure if she would not lived for five years in blissful ignorance and then died at year six if she hadn’t gone through all that treatment?

    We talk about breast cancer as a war and those who deal with it as heroes fighting the good fight. Cancer is the only disease I know of where we are expected to “fight”. Well I don’t want to fight if they find it in me. I honestly know that I personally would prefer to live in cowardly ignorance until the end. I don’t want to spend my time worrying about whether or not I have breast cancer. I have seen enough women go through long, complex and difficult surgeries, chemotherapies, radiation treatments and been left horribly disfigured, have dramatically reduced quality of life and still die of cancer.

    I think it is a valid choice for me to say I would prefer to have them find the cancer very late so it kills me fast in terms of when I find out, instead of a long slow death dragged out over many years living as a "fighting" cancer "survivor". Yet, when I say this, people react with horror. Why? Is it not my personal choice to make? Come back and talk to me when the equation has changed because some new screen test is on the scene or some new break through treatment is available and I might change my mind. I did undergo the occult blood screening for colon cancer so that shows I am not just a hysterical female with my head in the sand about cancer.

    When I turned fifty, my doctor assumed I would go for a routine screening mammogram. I declined. She was very upset with me although she did respect my choice. My reasons are complex. I am at very low risk for cancer. I started menstruating late. I had early pregnancies, prolonged breastfeeding and early menopause. I have no history of radiation therapy and I have not taken birth control pills or estrogen replacement therapy. In short, I have no risk factors. Weighed against the false positive and false negative rate of the test, I figure I’m better off not taking it. While there are many women who do not have risk factors who then go on to develop breast cancer, I take comfort in my lack of risk factors. My friend, armed with the same knowledge, decided instead to have a mammogram. Her mother had breast cancer at a young age and she had several risk factors. I think we both made the right decision because we both made the decision in an open reasoned way weighing all the positives and negatives. No one is calling her crazy so why do I get that treatment?

    Let’s face it. Mammography is a poor test. The false positive and false negative rates are too high. The treatment when cancer is found is drastic and the effectiveness of the treatment is uncertain for a lot of women. The risk of mammography itself is not known but it is not zero. So why aren't we working on a better screen test? Instead of pushing so hard to have a poor test performed on everyone, at huge cost to society, I would like to see some of that money and energy going to more research on improving the screening test for breast cancer. We need to think outside the box and we aren’t doing it.

    Suppose we could develop a mammogram that could include the watchful waiting component? We find a small tumor (DCIS) and do nothing but retest in a few months, or a few years, and only go in and do biopsies and surgery if the tumour is actually growing. Standard mammograms can’t do this. We could also start prescreening women for the genetic variants that make them less able to repair their DNA after radiation damage from a mammogram. In theory that might greatly reduce breast cancers caused by the test we use to find it.

    Maybe we could develop entirely new types of mammograms that are sensitive enough that we could treat breast cancer like we currently do cervical cancers. With a pap smear, you screen test women for cervical cancer. (And you don’t irradiate them doing it.) If you have a suspicious result, the doctor removes the suspicious cells and only those cells and a few around them. Why aren't we working on techniques to find abnormalities in the breast at a very early stage of only one or two millimeters before they metatasize? We could destroy just these suspicious cells using ablation techniques inside the breast where the suspicious cells are. This would not change the breast itself nor would we require chemotherapy and radiation but we could, in theory, stop the cancer. Okay we might ablate a lot of tiny harmless lumps but who cares? As far as I know, no one is doing this kind of research even though the technology already exists to kill tiny clusters of suspicious cells in the breast if we can find them.

    It’s very scary for women to hear that a mammogram likely won’t find anything even if it's there and if it does, it is likely not to be breast cancer but we will subject her to all kinds of nasty risky stuff anyway. And if it is cancer, we will subject her to all kinds of treatment she might not need. The reason why it is so scary is we simply don’t have any other test to offer women instead. We all know women who died of breast cancer between ages 40-50 and surely a bad test is better than no test, right? We have to be able to DO something about breast cancer.

    This seems to be why in the USA the consensus is, we ignore all the evidence and recommend the screening mammogram for 40-50 year olds. Otherwise we feel so helpless and vulnerable. Better to stick our fingers in our ears and chant “Pink! Pink! Pink!” loudly enough to drown out annoying scientific facts than to face our own fear of being helpless against a terrible disease.

    Maybe it’s even more pernicious than that. I sometimes wonder if this whole mammography debate, or lack thereof, is just one more example of the callous, paternalistic attitude medicine has had towards women’s bodies from the days when doctors refused to wash their hands and spread childbed fever. I don’t know for certain. I think doctors mean well. I just really have a lot of doubts about mammograms. The only thing I do know is no one seems to be asking these very important questions loud and clear. And if I, as someone steeped in screen testing, epidemiology and genetic counseling, am generally assumed to be incapable of making an informed choice to not have a mammogram, then is any woman capable of doing so? Is this whole professional horror at my personal and well-informed choice possibly also tinged with a patriarchal need to dominate poor little female me and protect me from my own ridiculous hysteria? Medicine may now have 50% female doctors but it’s still deeply patriarchal and highly authoritarian. This is, after all, the very same system that brought us women routine episiotomies only three decades ago.

    I think it is time to carefully assess our attitudes about this disease and our promotion of routine screening mammography, without informed choice, for all women. If a woman chooses to have a mammogram, knowing full well the risks and benefits of the test, I fully support her choice. By the same token, an informed choice to not have the test is an equally valid choice I think we should also be supporting. The solution to breast cancer is not to wear pink and go on a run through parks while shouting “All woman should have mammograms!” and accusing those who don’t agree with that of being uncaring, cheap or stupid. The solution is to gather in the parks, and laboratories, and demand we all tackle these hard questions about mammography and breast cancer treatment head on and truthfully.

    We need answers without fearful coercion or prejudice against those who ask the questions, or only answering the questioners with preconceived notions and old prejudices. The cure is out there and it is only waiting for us to stop shouting at each other about getting routine mammograms and go and find a real solution to this terrible scourge. Maybe then the dying from breast cancer will finally begin to stop.


    Selected References:

    1. Hartmann et al, “Outcomes of Routine Episiotomy, A Systematic Review”, JAMA, 305:2037, 2005
    2. Mandel JS et al, NEJM. Reducing mortality from colorectal cancer by screening for fecal occult blood. Minnesota Colon Cancer Control Study. 993 May 13;328(19):1365-71
    3. Chodirker, BN, Canadian Journal of Diagnosis, July 2001, pg 58
    4. http://envirocancer.cornell.edu/factsheet/physical/fs52.radiation.cfm
    5. Watmough, Quan&Aspden, “Breast compression: a preliminary study.” J Biomed Engin 15:121, 1993
    6. Elmore JG, et al, “Ten-year risk of false positive screening mammograms and clinical breast examinations..” NEJM. 1998;33:1089-1146.
    7. Thomas IM et al, “Prevalence of prostate cancer among men with a prostate-specific antigen level < or =4.0 ng per milliliter.” N Engl J Med. 2004 May 27;350(22):2239-46.
    8. Lidbrink et al, “Neglected aspects of false positive findings of mammography in breast cancer screening: analysis of false positive cases from the Stockholm trial” BMJ, 312:273, 1996
    9. Nielsen et al,  (1987) Breast cancer and atypia among young and middle aged women: a study of 110 medicolegal autopsies. Br J Cancer 56:814–819

    Comments

    Hank
    I read this about halfway and thought, "I have to send this to Dick Gordon" so I went to your bio so I could paste it in the email to him and...well, whaddya know???    Welcome to the site.  Powerful stuff!
    Natalie Bjorklund
    Thank you. We do have some common interests but my blog is not going to be an echo chamber of his.
    Hank
    It was just right in the strike zone of some things he said in an article and also when I met him a week or so back so I figured I would forward some of your talking points.   I got a chuckle when I got down to the bottom of your bio and realized he probably already knew the talking points.
    Bonny Bonobo alias Brat
    Absolutely brilliant article Natalie, I couldn't agree with you more and will immediately be sharing this article on facebook for my many peri-menopausal women friends to see. I also find the 'pink pink pink' and 'always trust your doctor to know what's best for you' mentalities very frustrating at times.

    After much research I also said 'no' to having an episiotomy and probably would have had a fight with my doctor if he had been present at my first birth but fortunately he was too busy playing golf and didn't get there in time :) Two nurses from casualty who had never seen a birth before were much better company.
    My article about researchers identifying a potential blue green algae cause & L-Serine treatment for Lou Gehrig's ALS, MND, Parkinsons & Alzheimers is at http://www.science20.com/forums/medicine
    Natalie Bjorklund
    Thank you! I had a similar fight with second birth over a doctor decision to do a C-section after an induction failed and I simply walked out of one hospital AMA and delivered on my own just fine in another hospital a couple of days later. The second hospital had a Belgian trained doctor who was married to a midwife and I had a very nice second delivery too.
    I'm not sure we shouldn't have a mammography revolt similar to the childbirth revolt.
    Bonny Bonobo alias Brat
    'I'm not sure we shouldn't have a mammography revolt similar to the childbirth revolt'.

    Natalie, lets hope a mammography revolt is more successful, I'm not sure that the childbirth revolution has gone very well really and in Australia recently midwives are now even being prevented from attending home births. I, like many of my friends, arrived at the hospital carrying my carefully researched birth plan and handed it to the medical staff who read it with much amusement and then totally disregarded it. I even brought my own cot sized baby mattress with waterproof covering for me to squat on and give birth on the floor, they looked at it in horror and whisked it away when I was in full labour and temporarily distracted during the contractions.

    The labour was progressing quite nicely (if you can call it that) and I felt like a marathon runner timing my contractions and their frequency and eventually I went into transition with the finishing line in sight and I told the nurse. She had a look and told me I was completely wrong and that I wasn't even 2 centimetres dilated. I have to admit that this finally took away my confidence in my research and I agreed to have an epidural as she said this would speed things up and take away the quite considerable pain of the contractions.

    The anaesthetist was called and arrived 30 minutes later, just as I was starting to give birth. He was so annoyed that he had been called in from his golf unnecesarily that he actually threw his gloves at me as he walked out of the room when I refused to have the epidural. I told him the epidural was completely unnecesary because the nurse had been wrong and I had been right about being in transition, which from memory I think normally occurs about 30 minutes before giving birth.

    The baby emerged head first with the cord tightly wrapped twice round his neck and I had to tell the 2 casualty nurses who had never seen a birth before, to quickly cut the cord which I held for her while she did this. Not a doctor in sight, at least that part went to plan. Then my doctor turned up after the birth and sewed me up so tightly that it was months before we could even have sex again. When I asked him why he had done this he said we would both thank him in future and laughed!
    My article about researchers identifying a potential blue green algae cause & L-Serine treatment for Lou Gehrig's ALS, MND, Parkinsons & Alzheimers is at http://www.science20.com/forums/medicine
    Preach it! I have had 2 (before I was 40) -- I have large, dense, fibrous breasts. I'm not doing that again -- ever.

    And if I got a diagnosis of cancer -- any cancer? Thanks, but no thanks. I'm not spending my remaining days on this planet puking my guts out.

    I'm not a genetecist, but I do have a PhD in Botany. It really pleases me to see somebody speak rational truth in this matter.

    Just another vibrant example of why I shouldn't read articles on science20 apart from the couple of people I come here for, even if it's the once-in-three-months test, like this one.
    Extremely poorly written. I skipped most of it judging by the first sentences of paragraphs and seeing that they had absolutely nothing to do with the subject. Even worse, they were trying to drag me into sentimental consent.
    When I reached the "scientific" part, I found it devoid of any factual value.
    Fyi in countries where almost everyone has basic medical coverage, the first mammogram is supposed to take place around 35y, and kept for future reference (after 40y, usually).

    PS: No flamewars, I'm not trying to insult anyone, I just believe listening to the truth should be a priority for whomever chooses to offer something to the public. Random articles on this site keep being one of my first sources of wasted time online.

    Just another vibrant example of why I shouldn't read articles on science20 apart from the couple of people I come here for....Random articles on this site keep being one of my first sources of wasted time online.
    If your time is so precious, then would it not be better invested by commenting on those authors you respect rather than engaging in desctructive criticism of what you deem to be "random articles"?
    Natalie Bjorklund
    I would really like to know what countries recommend a first routine annual screening mammogram beginning at 35 years of age. I am not aware of any myself. Are you perhaps talking about mammograms for women with say, BRCA1 mutation as opposed to routine screening mammograms for all women? In Canada it's 50 for the first routine screening mammogram in women with no special risks or specific symptoms. This is also the same for Sweden and the rest of Europe. Of course, women with risk factors or who have a specific symptom or need can get it done earlier if their doctor orders it. In the USA the age for the first screening mammogram is 40 years and they are the lowest I have ever herd of. This link here states no other western country in the world recommends screening mammography before age 50. _http://scienceblogmd.com/blog/index.php?blog=1. I can't find any other reference to countries who advocate screen mammograms before age 50. 
    Natalie Bjorklund
    It's actually rather interesting to me and not at all surprising either, to see a comment that disagrees with me which includes insults, a general dismissal of my article as mere sentiment, lacking in substance and which includes an unreferenced generalization that also appears to be wrong. This is exactly the treatment of troublesome questioning women that my article was all about. Thank you for demonstrating it so well for everyone.
    Gerhard Adam
    This is exactly the treatment of troublesome questioning women that my article was all about.
    I happen to think the article was good, but I also think that we have to be a bit cautious in some respects.  While I can appreciate the point you've made about mammograms and doctors in general, there will (no doubt) be some that put this in the same category as Jenny McCarthy and anti-vaccination.  Of course, the primary difference is going to be in the actual data available and the specific medical situation being assessed (i.e. mammograms being vastly different than autism).  

    I was certainly appalled when I read the point about doctors making decisions because "they knew better" and defying the patient's wishes.  However, I'm not sure that it is terribly useful to refer to "troublesome questioning women" without automatically creating a divide where none needs to exist.  You may think that I don't have any concerns because I'm a man, but my wife just recently had a mammogram (and had a scare for about two days), so it is very much an issue to me as well.

    Like any other profession, I'm sure we can all pull out our arrogant doctor stories, but I'm not sure that it tells us much, other than that we as patients have to be more diligent in looking out for our own health and reviewing the information rather than letting someone else make those decisions.  As I said, I'm urging a bit of caution because I think you have a good point, but I would hate to see it take on a tone similar to those that want to argue about "big Pharma" conspiracies and how we're all going to be murdered by GM foods.

    Even if the subject is complex, in the end, it's our health so we're the only ones with real "skin in the game". 
    Is this whole professional horror at my personal and well-informed choice possibly also tinged with a patriarchal need to dominate poor little female me and protect me from my own ridiculous hysteria?
    Unfortunately, statements like this are simply baiting.  Regardless of how you personally feel, you know as well as I, that many doctors have long suffered from a "God" complex and it really doesn't require anything sexist to demonstrate that they have the same attitude towards men.  The only real difference I can think of is that men tend to go to the doctor less (in a general sense), so there may simply be fewer opportunities for such attitudes to be displayed.

    Mundus vult decipi
    Natalie Bjorklund
    I sat on this article for a long time. I didn't want to publish it precisely because I don't want to be associated with the anti-vaccine crowd or the big pharma/GM foods conspiracy nuts. I also worried that if I told someone what I was really thinking about mammography, then maybe, just maybe, some woman would not to have a mammogram and die of cancer because of me. I finally decided my own sense of fear and intimidation in the face of the constant pressure to conform and have the mammogram needed to be addressed. I had to publish this. There is plenty of pressure on women to get the mammograms. It's peer pressure as well as pressure from professionals. We're all afraid of breast cancer. 
    The baiting part, yes, in a way it is baiting, but on the other hand the history of medicine and specifically women's issues has not been illustrious and it is well documented. You do have a point about men though. I have heard some hair raising stories from men with breast cancer or infertility issues.
    No rational being would want to be viewed as an anti-vaccine or GMO food "nut," but I hope that you do not dismiss the modern dangers of vaccinations - due, in my opinon, to the source and quality of materials used, nor that GM foods are just another form of hybridization, because it is not, and you must know that.

    I may well have another breast problem right now, but even if I could find a good radiologic technician, would the radiologist be good - if the evidence weighed in on an invasive cancer, what surgeon and in what environement would I receive care? I know of no place where all these factors are equal. Even trying to receive a breast ultrasound first - then MAYBE a mammogram, is considered outright rebellion, and remains almost impossible to secure.

    I even went to a surgeon who is marketing herself as a specialist in breast disease, and who claims to work like twine with "her" radiologist. None of this was true, and, in the end, and after a lousy breast exam, I must add, (I firmly believe breast exam techniques are woefully inadequate, which is why women find their OWN lumps, and docs can't), I was told the most outlandish hypotheses about my breast pain, and not ordered either mammogram, nor ultrasound. And, at that point, I just said, "Feh." I'll live until I die. (I had DCIS 12 years ago - minimal tx).

    The only real difference I can think of is that men tend to go to the doctor less (in a general sense), so there may simply be fewer opportunities for such attitudes to be displayed.
    A quick search reveals that several surveys confirm your statement. I guess not everyone is lucky enough to have an approachable, experienced but humble family doctor like mine. Or they're letting machismo run their lives.
    Gerhard Adam
    Or they're letting machismo run their lives.
    I don't think it's anything like that.  I think it's as simple as not wanting to bother going to see a doctor and feeling that "no news is good news".  Therefore if I don't go to the doctor, he can't give me any bad news (i.e. the denial aspect) and until I'm in pain to where I can't move, there's no point in going to the doctor.

    I know personally, I broke two fingers on my left hand and waited three days before I had it looked at.  The only reason I went is because it wasn't getting better on its own.  There was no machismo involved, it was simply a case of ... "ahhh ... it'll get better".  So when it didn't, I was forced to go.
    Mundus vult decipi
    Thank you for a very intelligent and helpful article. I am an American woman in my mid 40s with two teenage daughters and have been going through an ordeal ever since getting a mammogram last summer. The mammogram showed that I have dense breasts that are cystic, and I was subsequently sent for breast ultrasound, which I have been repeating every few months. After my most recent ultrasound, they called me and said that even though the ultrasound shows no change, I need to get another mammogram.

    However, now I am really questioning whether I should due to the radiation risk. Also since I have cystic breasts, isn't it a given that the mammogram will be considered abnormal and I will be sent for further testing? It is really nerve-wracking for me. I don't have a family history of breast cancer, I am not overweight, I breastfed both of my children, and I don't drink excessively, so I don't have any obvious risk factors. Do you think that I should decline getting another mammogram and just stick with the ultrasounds? I am in the process of divorcing and raising teen girls alone, so a hospital stay would be a big problem (no family to help me) and I cannot afford to lose wages.

    Many thanks,
    Elizabeth

    Elizabeth,
    What a nightmare for you....it's a stressful way to go through life.
    I'm Australian and our program focuses on women aged 50 to 70, but I decided to pass, I'm not satisfied...I think the benefits have been greatly overstated and the risks go unmentioned...the facts are only starting to emerge here. Once these programs are in place they just plough along toward the target with no regard for our legal right to understand what we're agreeing to. I'd also be concerned about the radiation and all of the compression of delicate breast tissue. Over-diagnosis is a major problem with breast screening....the more often they look, they're more likely to find "things" and you end up over-treated. I'd urge you to head over to the Nordic Cochrane Institute's website and their excellent summary of the evidence...they no longer recommend breast screening. Also, breast self exams and CBEs have been out for a while, they just lead to anxiety and excess biopsies. I practice breast awareness, just taking note of your breasts in the mirror every morning after showering.
    You can so easily end up on a miserable roundabout with screening and especially when you add excess.

    Thank you so much for your reply. I think I am going to decline the mammogram. When the ultrasound is unchanged and my gut feeling is that there is nothing malignant going on, why put myself through the compression and additional radiation? I hope that in Australia you are treated as an individual. I was sent to a "breast diagnostic center" by my gynecologist after the initial mammogram last year turned up cysts. At the diagnostic center, I feel that my experiences have gotten worse and worse; being treated like cattle and poked, prodded, and squeezed in a very inconsiderate manner. I have never seen a live doctor at this center; supposedly she reviewed my ultrasounds and came to this conclusion, but I have never seen her nor spoken with her. The office staff has been rude and impersonal. Is there a way of locating doctors who have more respect for individual decision making who don't treat you like you are crazy for declining a test? I feel that it is my body, so they should explain the benefits and risks of mammograms and then let me decide.

    Thanks,
    Elizabeth

    No, no respect for individual women here, IMO, we're treated like a herd, and it's fine to mislead and even harm the individual as long as it helps someone and the target is met....the attitude is, "it's for their own good"...very paternalistic. Prostate screening is handled very differently, individual men make their own decisions and real information became available very quickly.
    Only one academic stepped forward and warned women about mammograms, they are controversial to say the least...she was largely ignored in the push to get 70% of women in the target age range counted and screened, and they cherry pick research IMO, only presenting things that support the program. I hear our brochures will be redrafted by Cancer Australia, but I'm not hopeful, several attempts were made in the UK....for some reason they have a hard time telling us the truth, perhaps, because of the conflict between informed consent and protecting the program and meeting targets. I think the outcome of the UK review will be very interesting.
    Women are getting the message here....with breast screening anyway.
    Our cervical screening program is out of the Ark, excessive and inefficient, maximizing risk, but many women still believe frequent screening right through life and starting at 18 is important, there is virtually no real information on this subject that women can access....you have to head to the UK, Finland and the Netherlands for real information. Most women are not even aware there is anything controversial about our program.
    I find the lack of respect for informed consent in cervical and breast cancer screening to be quite outrageous...and I firmly believe change will only occur from the ground up, when more women refuse to screen and the programs become uneconomic, then they'll be forced to change. As more women become aware, I feel there will be increased demands for some honesty and respect in cancer screening and for smarter testing, for example...why would the 95% of women aged 30 and older who are HPV negative and not at risk from cervical cancer wish to endure a lifetime of unnecessary pap testing and the high risk of excess biopsies and over-treatment? Without real information, we can't make the best decisions for our health. Most of the information we get on screening is misleading or blatantly incorrect...we're told there is no point offering HPV primary testing and that if you happen to have a HPV test outside the program and it's negative, you still need regular pap tests....this is untrue of course, your HPV status gives you vitally important information, positive and you may benefit from pap testing, negative and you're not at risk so you should be offered infrequent HPV testing or you could test yourself...it seems when others decide on a program, it's fine to lie to women to protect the program, you can't have individual women doing their own thing or they lose control and that threatens the program...of course, in this case it means putting most women through unnecessary pap testing, excess biopsies and potentially harmful over-treatment, now who benefits from that? Certainly not individual women...we miss cancers due to inefficiencies and worry and harm masses of not at risk women and we waste millions, it makes no sense.
    I assume all information provided to women is incorrect, it's the safest approach. It's shameful we have to get to the facts ourselves...I've also found GPs often just recommend testing if a program is in place or they are actually rewarded for reaching screening targets, so in most cases women can't even rely on their doctor for balanced information.

    Gerhard Adam
    Are you implying that there is some sort of law?  Some sort of enforcement that prevents women from making their own decisions?  Are you suggesting that there are no female doctors, so everything must be, by definition, paternalistic?
    I assume all information provided to women is incorrect, it's the safest approach.
    So, it's safe to assume that you trust no doctors, including females.
    Prostate screening is handled very differently, individual men make their own decisions and real information became available very quickly.
    This simply reflects a gross misunderstanding of men.  Most men will never go to the doctor unless an ambulance takes them.  Even then, the majority of men will not visit a doctor unless compelled to by their wives.  The notion that men pursue medical treatment [in the absence of anything being wrong] as rigorously as women is simply a fable.

    If men had to undergo the equivalent of a mammogram every year, there would be no mammograms.  Not because men make their own decisions, but because men tend to unequivocally avoid going to doctors. 

    Given the number of female medical practitioners, I find your post to be patronizing towards women.  There's a sense of victimhood here which simply seems self-indulgent.  No one compels women to go to their doctor, most certainly not their husbands or boyfriends. 

    Women are certainly free to go to female doctors, so if you still feel like you're being sold a bill of goods, perhaps you need to take it up with other women, instead of simply presuming you know what occurs in men's lives.
    Mundus vult decipi
    Sorry if there was some misunderstanding. I didn't say anything about men at all in what I posted. There was another post by someone else, not me. My doctor is a female and the doctor at the center I visited is also female. My issue is not with anyone's gender but with the medical establishment in America being very condescending of anyone, male or female, who does not blindly obey "doctor's orders" or who questions whether the benefits of a certain test are worth the risks. I think that all people, regardless of gender and regardless of their doctor's gender, deserve accurate information and from the accurate information can make an intelligent decision. I am also not saying that mammograms are always bad, but I am saying that for someone who is in her 40's with no obvious risk factors, it has created a huge amount of stress in my life. I apologize for any miscommunication and have no ill will at all toward you or anyone else.

    Sincerely,
    Elizabeth

    So sorry to hear that. It sounds like the medical system is about the same there. Sometimes I think it is all about the money; diagnostic centers make a huge amount of money from all the tests that they run but don't seem to care about potential harm that they are doing. Doctors here seem to automatically recommend extensive testing for everyone without really using good judgment about whether that individual legitimately needs the test and really use high pressure sales techniques to try to get you to take the test. I resent being treated as if I am stupid and ignorant by the medical establishment. Any time that I have declined a medical procedure or a dental x-ray, I have been treated that way. I have a master's degree and good evaluations at work, so I must not be a complete imbecile or someone who cannot understand information. It should not be so difficult to get accurate, unbiased information to make informed decisions.

    In any case, it is nice to talk with another Elizabeth and to see that even though we live so far apart, we have had very similar experiences.

    Thanks very much for replying to me.

    Thank you for this... I often give an introductory lecture on clinical decision making and receiver-operator characteristic curves and it's always instructive to hear the gasps when I demonstrate that testing positive on a test with 95% accuracy may mean they (or their patients) still have a less then even chance of having the disease, depending on prevalence. Unfortunately it's hard to have a rational debate on such an emotional subject. Once anyone starts questioning the advantage of certain screenings, emotions start kicking in, the death panel talk starts, and any chance at a reasonable discussion dies a quick but painful death. I've also wondered at the well-meant but what appears to me to be almost condescending way in which we treat women with breast cancer, although this entry really sharpened for me the divide between the way men and women are treated in the medical world (as well as in the "cancer culture"). It seems to me to be one of the very few instances where you are defined by a disease rather than as a person who happens to have a disease. I really appreciate you bringing that point forward, because as a man I often forget that I tend not to be treated like a "poor little dear" when I see a doctor, whereas a lot of women are, and it's good to be reminded of this. Thanks, above all, for providing a wonderful demonstration that health care decisions aren't set in stone, aren't black and white, and are worthy of careful consideration and thought. Well done!

    Natalie Bjorklund
    Thank you! That was really my point. I specifically made mention of women who make carefully considered decisions to not accept recommended screening and how important it is we respect those choices. What is the right choice for one person is not the right choice for another. The emotional issues are generally given short shrift as well but they are not without cost and we need to weigh that cost into our decision.
    " It seems to me that even if mammograms find early cancer, the odds are better than 50:50 it would have just gone away by itself no matter what women let the doctors do to their bodies."

    I respect your decision but I do take issue with the above quote. There is absolutely no proof that this is true and therefore can be misleading for women who are considering the option of screening or considering treatment for an early stage breast cancer. Until large studies on the natural history of DCIS are performed, no one can say that the majority of these cancers don't require treatment or that they go away on there own.

    Natalie Bjorklund
    Well, that was the result suggested by the Danish study and I did say the Danish study needed to be replicated in a larger study group. At the moment the Danish show the 50:50 odds it will just go away by itself. That would be the best data we have and it is insufficient.
    For what it's worth, the U.S. recently switched its screening recommendations for mammograms to 50 years old from 40.
    It was not taken well in some corners.

    Additionally, there's a study from the American Journal of Obstetrics and Gynecology (full article requires subscription) that, besides suggesting most U.S. women going in for screenings still want them at 40, indicated that the same population feels that increasing the age for screenings was unsafe. The stunner for me was that those with previous false-positive screenings were less likely to accept a doctor-recommended delay in screenings until 50.

    I can't speak to causation (and I don't think the study can either), but it might suggest that the hard sell for screening between 40 and 50 in the U.S. went *too* well.

    Natalie Bjorklund
    I agree about the hard sell. It's a very hard sell for women and the peer pressure is added to the hard sell. Every time a woman goes grocery shopping, tons of products are covered with the pink ribbons promoting how some of the proceeds go to breast cancer research or providing mammograms to the low income women. Multiple companies that advertise on television do the same. Then there are a continuos stream of community level events, walks and runs for breast cancer. Women are literally bombarded at every step multiple times a day from multiple sources. The other thing I find very disturbing is many of the advertisements suggest that mammograms in some fashion might prevent cancer itself like having a mammogram somehow starts stops cancer. An astonishing number of women I have talked to actually think that.
    Dear David,

    I think you are right that in America, mammography screenings in the 40-50 age group have been pushed relentlessly. Unfortunately I think I am one of the victims of this. Here is what has happened to me:

    Thank you for a very intelligent and helpful article. I am an American woman in my mid 40s with two teenage daughters and have been going through an ordeal ever since getting a mammogram last summer. The mammogram showed that I have dense breasts that are cystic, and I was subsequently sent for breast ultrasound, which I have been repeating every few months. After my most recent ultrasound, they called me and said that even though the ultrasound shows no change, I need to get another mammogram.

    However, now I am really questioning whether I should due to the radiation risk. Also since I have cystic breasts, isn't it a given that the mammogram will be considered abnormal and I will be sent for further testing? It is really nerve-wracking for me. I don't have a family history of breast cancer, I am not overweight, I breastfed both of my children, and I don't drink excessively, so I don't have any obvious risk factors. Do you think that I should decline getting another mammogram and just stick with the ultrasounds? I am in the process of divorcing and raising teen girls alone, so a hospital stay would be a big problem (no family to help me) and I cannot afford to lose wages.

    If you have any further information about this or any advice, it would be appreciated.

    Many thanks,
    Elizabeth

    vongehr
    I think the article's first half is very good indeed. At some point however, there is a little bit of
    Jenny McCarthy coming through. If compressing the breasts is an issue, the issue is clearly squeezed. My poor girlfriends - and I thought they enjoyed it.
    One problem is as always: Given that most people are much sillier than you and me, can one give our behavior as a general advice? I personally do it just like you. I am educated and rational enough to go read up on medical problems rather than trust the docs I taught physics for the life sciences to (so I know well how little science they are capable off). I too did things like pulling the needles out of my arms and leaving the hospital while the doc was almost threatening me not to leave the bed. However, most people (some even here on a science site, as you see from some of the comments) are even much more silly than the docs, and for the very large majority there is only one advice: Listen to your physician and do exactly what he/she orders. It is not ideal, but still much better than them finding alternatives on the internet. Most cannot differentiate between you and a full fledged McCarthy, and the McCarthys outnumber you by a lot.


    Natalie Bjorklund
    Okay first point: the compression of breasts in a mammogram is absolutely NOT comparable in any way shape or form to usual sexual touching by a lover. The harder the squishing the better the picture and so a lot of technicians seem to forget it's sensitive tissue. In fact, the pain of the mammogram itself can be bad enough for some women that they will never have one again . I also know women who came out of their mammograms badly and deeply bruised.  A lot of other technicians do take great care not to cause pain and bruising. 
    Second point: I am aware of certain "kinky" types who do rather extreme torture of breasts for sexual gratification and maybe you're one of them and that's why you went straight to sexualizing breast compression by mammograms. Maybe we should check the cancer rates among that segment of the kink crowd as that might give us better clue than a mere postulated theoretical risk.

    Second point - If people read my article and are too stupid to differentiate my writing from the anti-vaccine woman, well that's their problem not mine. 

    I wish this sort of article was a common find, instead it's pretty rare. Women and informed consent - are you serious? I'm the rare woman who has not only declined breast screening, but also rejected cervical screening almost 30 years ago. Over the years I've watched the fear, distress and harm these programs cause to the healthy population of women - it's been difficult - and I've felt a "climate" develop - one that silences and isolates critics of the program and especially "non-compliant" women. One that encourages and approves of coercion, unreasonable pressure, harassment, unethical tactics and dishonesty.

    There is also censorship...they can manipulate the truth, omit important risk information, inflate benefits, give skewed facts and even mislead, but giving women hard facts and medical journal references - NOT allowed, that threatens the program and its vested and political interests - keeping women ignorant and compliant keeps everyone happy, apparently...a double standard exists - the facts came out quickly with prostate screening and doctors were reminded to obtain informed consent. We're still waiting for the facts and informed consent.

    Pap testing was the first thing that didn't add up for me - I asked questions and when I got no answers, I did my own research and was very concerned - the attitude was that all women should simply submit, "doctor knows best"....women were not advised of actual benefits and risks and were counted like sheep to reach govt-set targets. Our doctors even get target payments for pap testing - most women are unaware of this potential conflict of interest. the brochures do not inform women of risks and actual benefits, they simply promote testing.
    Lifetime risk of this rare cancer - 0.65% - take out false negatives and factor in the other things that had this rare cancer in natural decline before screening started, and fewer than 0.45% can be helped by testing, if anyone - there are no randomized controlled trials for pap testing, the gold standard for screening tests.
    The lifetime risk of referral for colposcopy (and usually some sort of biopsy) - 77% - almost all are false positives.
    That is massive over-detection and potentially harmful over-treatment...most women are STILL unaware of these facts. We know some women are left worse off - with cervical damage that can mean cervical stenosis, cervical incompetence - infertility, miscarriages, more c-sections, premature babies, high risk pregnancies, psych issues etc...yet no one is really counting these women and no one seems to care - as long as women don't know, that's fine.
    No, it's not fine....

    We didn't need to cause this amount of damage - our program has zero regard for the healthy population of women, the more than 99% who'll never benefit from testing. We screen 2 yearly - over-screening which means more false positives for no additional benefit. We screen young women knowing this does not change the tiny death rate in young women and leads to very high over-detection and over-treatment, not to mention fear and worry. 1 in 3 pap tests WILL be "abnormal" in women under 25 - false positives - the pap test picking up normal changes in the maturing cervix or transient and harmless HPV infections.
    Women under 30 don't benefit from pap testing# and should not be tested...
    Finland has the lowest rates of cc in the world and sends the fewest women for biopsies - they offer 5 yearly testing from age 30 to age 60.

    It now appears that many women could forget pap testing - at age 30 they could have a HPV test (the HPV blood test is available) and if negative to high risk HPV and in a monogamous relationship or no longer sexually active, could forget testing.# (she could revisit the subject if her risk profile changes in the future) At the moment women don't get the choice - doctors test to cover the possibility her risk profile "might" change - this is paternalistic - it should be the woman's decision when screening means risk.
    Doctors currently make decisions FOR women and accept risk on our behalf, but few accept responsibility for the large number of bad outcomes.
    (#See" "Cervical cancer screening" a handout for doctors (not women!) in "Australian Doctor" July 2006 by Assoc Prof Margaret Davy and Dr Shorne - online, a download)

    Very few women are giving informed consent for pap testing and many don't even realize the test is elective, has risks or that cervical cancer is rare, even in high risk groups.
    We see study after study pondering why some women don't have pap tests - they're uneducated, lower class, non-voters (I kid you not!), immature etc....it is never even acknowledged that screening is elective and that we are free to accept or decline as WE see fit.
    Our screening has always been coercive in nature, an unwritten law and that's not screening - it's about power, control, politics and profits.

    I agree with your comments about mammograms - I've taken myself off the screening registry. I don't believe anyone has made any attempt to warn women of risks with this testing or actual benefits - all very one-sided and biased - the focus is the program and the 70% target.

    We have near silence from doctors here, no one is protecting women, our health and rights - the UK is fortunate to have some amazing advocates for informed consent for women in cancer screening programs.
    Prof Baum recently called for the UK program to be halted after more research was released which showed the fall in breast cancer deaths is about better treatments, and not screening. Screening may be harm for no or very little benefit. Pro-screeners have had the last word here and the research has received little coverage in the press.
    Prof Baum is also taking legal action against the NHS for failing to obtain informed consent from women. I'd recommend his latest lecture at UCL, "Breast cancer screening: the inconvenient truths" - on Utube and at his personal website. The Nordic Cochrane Institute were so concerned at the inadequate nature of the information being given to women that they prepared, "The risks and benefits of mammograms" - at their website. Sadly, most women won't see this excellent summary - please give the references to your friends and family.
    New research: http://www.guardian.co.uk/commentisfree/2011/aug/02/breast-cancer-screen...
    http://www.bmj.com/content/343/bmj.d4411
    http://www.google.com.au/search?q=Dr+Margaret+Mccartney+and+we%27re+in+t...

    I certainly respect your right to choose, now we just have to convince doctors, the government and pro-screeners generally....it starts with every woman demanding the facts and making her own informed decisions. We are individuals and that overrides programs, targets and incentive payments.
    Blogcritics and Unnecessary Pap smears is an interesting forum - more than 5000 posts from women (and men) who've been harmed by screening or are concerned at the lack of respect for informed consent in our screening programs.
    Dr Joel Sherman's medical privacy forum also has a great section called, "women's privacy concerns" parts 1 to 6 - see the references in the side bar - especially by Dr Angela Raffle. Dr Sherman also wrote, "Informed consent is missing from cervical screening" - you can say that again and add breast cancer screening!

    One final thought:
    I also find it insidious the censorship that's practiced to keep the facts from women. I've lost count of the posts that have been deleted over the years, simply because so many things about cervical and breast cancer screening didn't add up...people were appalled that I'd dare ask...that usually indicates that there is something to hide. Ever noticed the outrage from the screening authorities when something negative is said about testing - they often try to discredit the speaker and always appeal to our fear about cancer, WITHOUT answering the question or refuting the evidence with hard facts...it's always, "we hope women don't read that and stop having their screening or we fear more women will die preventable deaths".
    It's pure evil to deny women the truth, to silence critics, hide important risk information, evidence of actual benefit (as opposed to inflated) or to only apply evidence that supports screening...that's not screening, which requires, legally and ethically, informed consent from women (and men), but something far more sinister...it's about control, power, profits and politics and has little to do with healthcare.

    At 41, not really clear about why I decided to have a mammogram, but I did. The radiologist said, "It looks like cancer. And it looks invasive. And the other breast doesn't look right either." Other opinons from other sources -- nothing was "clear" enough. Many more focal x-rays. Excisional bx with general anesthesia to remove the alien formation, and six months of death-march hell, as the docs thought to wait to see about the other breast -- nothing. Nothing at all.
    No pregnancies. Dense breasts. Quite a large scar. Disgusting quality of care. Fear and anxiety that paralyzed my family. I had felt no masses. I just did what I thought I "should" do, even with no love affair with medical tripe.

    Could something have been found? Perhaps, but I was well aware that cancerous cells are often in our bodies, but the body routs them out. I KNEW that. And, the number of lies encountered was profound, including that any of the medical staff at any of the offices visited truly works together as a "team." I am more worried now that I have subjected myself, (because it was all "my" choice, of course!, they tell me), to the extensive radiation, the completely fouled MRI, and the contrast medium. I don't know what I was thinking. And - no one - no one is counselling women who have gone through this, or offering breast anomaly follow-up. Not really. It's all quite a crime. PS If anything in your life is making you sick - quit, leave - whatever it takes.

    At 41, not really clear about why I decided to have a mammogram, but I did. The radiologist said, "It looks like cancer. And it looks invasive. And the other breast doesn't look right either." Other opinons from other sources -- nothing was "clear" enough. Many more focal x-rays. Excisional bx with general anesthesia to remove the alien formation, and six months of death-march hell, as the docs thought to wait to see about the other breast -- nothing. Nothing at all.
    No pregnancies. Dense breasts. Quite a large scar. Disgusting quality of care. Fear and anxiety that paralyzed my family. I had felt no masses. I just did what I thought I "should" do, even with no love affair with medical tripe.

    Could something have been found? Perhaps, but I was well aware that cancerous cells are often in our bodies, but the body routs them out. I KNEW that. And, the number of lies encountered was profound, including that any of the medical staff at any of the offices visited truly works together as a "team." I am more worried now that I have subjected myself, (because it was all "my" choice, of course!, they tell me), to the extensive radiation, the completely fouled MRI, and the contrast medium. I don't know what I was thinking. And - no one - no one is counselling women who have gone through this, or offering breast anomaly follow-up. Not really. It's all quite a crime. PS If anything in your life is making you sick - quit, leave - whatever it takes.

    Anon,
    I'd get some legal advice, it is impossible for women to give informed consent for a mammogram with the "information" currently provided to them. The govt and doctors should be protecting us from harm and protecting/respecting our legal rights. I know some screening people take comfort from the "consent form" women are asked to sign. I think the big department stores that now provide breast screening also think that protects them if women are indeed harmed by the testing - yet they're kidding themselves - you cannot consent to something you don't know about - and the authorities and doctors have chosen NOT to tell you about lots of things including over-diagnosis. They have NOT provided clear, balanced, unbiased facts and statistics. They're protecting the programs with their vested and political interests, not women.
    I'm sorry to hear you went through so much - it's well known that women (and probably their families) suffer long after women have been given the all-clear - from anxiety, fear and an increased "unhealthy" awareness of cancer, even depression.
    This happens to far too many women - in cervical screening 77% of Aussie women will at some stage be referred after an abnormal result, when with no screening 0.65% would get this cancer. In the States the referral rate is even higher. Many of these women are left worse off....and many believe they had a "cancer scare" or indeed, "had cancer".
    The only way these people will change and respect women as adults is to punish them for ignoring informed consent - at the moment there are no consequences for putting women through these awful and damaging ordeals. They need to understand the REAL risk is ignoring our right to make an informed decision about testing.

    Hold on, now - there's a "Save First Base" t-shirt offered for sale on this page? I'm out of here. The pink bastards!

    Hank
    Save second base.  It's not a Save The Screening Mammogram Industry shirt.
    A major review in the UK will closely examine the evidence for and against mammograms and the brochures will be re-drafted again...thanks to the hard work of Prof Baum and other advocates for informed consent for women.
    Why is it so hard to tell women the truth? Why is there such opposition and resistance to women making their own informed decisions about screening? It's not an issue in prostate screening.
    This is great news for English women, meanwhile, here in Australia, no one is saying or doing anything to warn women, protect them from harm and challenge these programs.
    It reflects very poorly on our medical profession that we don't even have one outspoken advocate for informed consent. Not one...women are on their own and fair game.

    I applaud this article and it's very true that there are FEW such resources for women online . I'm currently going through a similar hell....age 54, agreed to a screening mammogram, (I'd had 3-4 in my 40's but stopped doing them due to the call backs because of dense breasts and my concern over unnecessary radiation). Stupidly, I agreed to this mammogram as part of being a new patient and getting established with a new doctor. Frankly, I suspected that if I didn't "consent" the doctor would withhold services and drop me from his roster. This is part of the overall bully attitude that women face regarding mammogram screening, particularly in the 50+ age range. My mammogram turned up a "small grouping" of microcalcifications. As some of you reading this may know who have been through the microcalc scare, we are now warned that microcalcs are often the "forerunner" of cancer and should be biopsied if they appear in certain formations or groupings. I did my homework, read up on this for FOUR MONTHS, and reached the conclusion that I would be doing a reasonable thing to keep an eye on this calcs and refuse the biopsy. I do not feel I am being in any way reckless with my health or putting my life in danger. What I have encountered has been nothing short of obscene and absurd. I was warned that I shouldn't wait five months or even a couple of months before getting this biopsy. Even though I told my internist and the general surgeon (who never went over the radiology films with me), that I had no one in town with me as moral support having just moved to a new city, they were all unmoved and continued to bully and terrorize me. I have now demanded to speak face to face with the up til now faceless radiologist who made this biopsy recommendation. Apparently asking for an invasive procedure to be done on MY body meant that they could all hide behind a closed door and not even go over the films with me man to man or woman to woman. Or whatever the case may be. All this has raised major red flags for me and sent me on an almost 24/7 mission to read literally hundreds of forum postings, medical articles and other information to fully understand what I have gotten myself into by merely having this "screening" mammogram as an asymptomatic person.

    Furthermore, even IF cancer is discovered, the options for treament suck so bad I would never consent to the current available "treatments". I also would like to know why ablation or zapping of mini areas of abnormality can't be done? This is part and parcel of the idea of the breast cancer pink crowd not directing funding to far more effective and less destructive/dangerous treatments especially for very small groupings of microcalc. Many a woman will be put through what I call "microcalc hysteria" this year. I am one of them, but I am refusing to be pushed into a biopsy. It took me a month of reading online before I discovered that a titanium metal clip or marker is left permanently in the breast tissue after a biopsy just in case.......ridiculous! I wonder how many women have been totally unaware that this little marker is left permanently in their breast.....some women do indeed suffer harm and pain from this object in their breast, even though of course radiologists deny there's any problem with it.

    I have emailed Dr. Welch at Dartmouth who wrote an excellent paper and book on this overdiagnosis subject and he was kind enough to email me back. I think it's high time that intelligent, questioning and reasonable women like us step up and post extensively online with our personal experiences. I would be more than happy to post a picture/jpg of my microcalcs on an outside link for others to see just what they look like and what is being recommended to be biopsied. If anyone replies to this, let me know and I will upload it. Yes, I took the time to make a jpg image of my mammo film and crop that image of the calcs so that it's not a hidden thing that others can't see. I would like people to see what's being asked to be biopsied. Let's get the info out there. At this point, I am going to get a second and third opinion about my microcalcs and whether they really need to be biopsied. This will likely come out of my own pocket, as insurance will not cover it. But I'm curious. I want to know. I want to delve and find out. Hopefully what I find out will help someone else to avoid unnecessary medical intervention. The biopsy industry is OUT OF CONTROL. Do people die of breast cancer? yes. This is tragic and we all want better treatments and interventions but what is going on now in many cases doesn't fall in that category. Stay strong, stay questioning and we'll find the truth in here somewhere!

    AD, I totally agree, cervical and breast cancer screening is out-of-control. Both programs operate without informed consent. Here in Australia we over-screen women for cervical cancer and engage in "massive" over-treatment. A problem for a small number of women has been turned into a major industry in over-treatment. The program worries and harms vastly more than it helps....0.65% lifetime risk of cc, fewer than 0.45% can possibly be helped, and the lifetime risk of referral for colposcopy/biopsy is 77%. (almost all false positives)
    Women have no access to self-test pap and HPV kits, and no primary HPV testing, so most women who test and are biopsied are not even "at risk" from this rare cancer. You look at countries like Finland, The Netherlands and the UK, some attempt is made to protect the more than 99% who can never benefit from this testing.

    It was only last week that the first major piece appeared in the paper here warning women of over-diagnosis in breast screening. The facts surrounding cervical screening are still hidden...
    I think the so-called benefits with breast screening are also over-stated - Prof Baum believes the UK program needs to be scrapped - a major review is in progress.
    It concerns me the way women are treated by the medical profession - we're denied the facts, provided with spin and are ordered into screening, when it's supposed to be an offer. Coercion is also common in the States....no pap = no Pill or even no non-emergency care.
    Women are treated differently - contrast this with prostate screening, risk information came out quickly and doctors were reminded to obtain informed consent. Men are responsible and can make up their own minds about these things, they own and control their own bodies. We apparently, don't, screening is "done" to us "for our own good"....
    I totally reject that archaic thinking...

    Screening can open up a huge hornets nest...and mean months or years of worry, uncertainly, pain and even suffering - this is very bad for our health and quality of life. Many women actually consider themselves cancer survivors when they've had a false positive and over-treatment. We have women on a merry-go-round of testing, re-testing, biopsies, over-treatment that can go on for years...and all with no informed consent and in the case of coercion, no consent at all.
    I don't have mammograms or pap tests, informed decisions - every woman should be provided with ALL of the facts and left to make up her own mind. I had to do my own research...and was shocked when I compared the facts to the spin and misinformation, complete with glaring omissions, released to women.
    Once you have an "abnormal" result, few are prepared to stop, wait and think, most are passed down the diagnostic chain - you're wise to take control. I'm sorry the ordeal is not over for you...
    Dr Welch has written some great books and they've helped me make informed decisions. I totally agree with you, I've tried to spread the word for years. It's difficult, anything negative about pap testing is usually rejected, censorship is a big part of keeping women ignorant and compliant. I finally see that changing though, with more women prepared to speak out...and listen.
    Breast cancer screening - the tide is turning, more women are declining to screen. We still get the patronizing orders to screen from those with a vested and political interest, but their pleas are less effective. The people who profit and benefit from these programs will fight hard to maintain control of the target population, but the cat is out of the bag, and I think we'll see major change demanded over the next few years. They'll be forced to change as more women (and their doctors) walk away from unethical and harmful screening programs - these programs have always operated outside the law and ethical standards, it's shameful this was allowed to continue for so long.
    We hear about the success stories, but never hear about those who've suffered at the hands of these programs - they don't want women to hear from people like you, you're bad for business!
    You might care to post at Blogcritics and Unnecessary pap tests - more than 6000 posts (from memory) from women who've been harmed by screening or those concerned at coercion and the lack of respect for informed consent. Women have been brainwashed to accept screening, blind faith, and attack those who question or decline, that needs to change, we need to work together and fight for the rights of all women, to make informed decisions about testing, whether that's a yes or a no.

    Really good article!!! Thanks!

    Really good article!!! Thanks!

    http://www.smh.com.au/national/behind-the-screen-20111103-1mxrh.html
    One of the articles that appeared in the paper here recently...about time, I've been waiting for the facts to emerge for sometime now...

    Bravo Natalie for using critical thinking and expertise to come to your lucid conclusion!
    What do you think of breast thermograms as a screening tool?

    Thank God! People need to THINK and REASON! Doctors are like your brother, neighbor etc etc. They know what they have read. WE can do the same thing and learn much about taking charge of what we allow them to do to our bodies (Which are the temples of the Holy Spirit, (God)) Why let some human do anything to our bodies before we research it ourselves? Why cut off your body part rather than treating it and saving it. The Doctors, who much of the time are in it for the money!, scare the patient rather than healing. Many times the body will heal itself IF given an opportunity. #1 with the correct foods eaten in their natural state (not mean). WHY LET SOMEONE TAKE CONTROL OF YOUR HEALTH WHEN YOU WOULD NEVER TAKE YOUR AUTO TO A MECHANIC AND LET THEM DO WHATEVER THEY WANT TO WITH NO QUESTIONS ASKED!?? People, get additional opinions and don't let them know what the other opinions were!. Research then make your educated decision. bj

    bj, exactly, and if women (and men) take the time to do some research, they can also test their doctor, ask them questions and listen to the answers - you'll know in a second whether they should be advising you, whether you should follow their advice or get a second opinion. You hear doctors talk about all of the abnormal pap tests to get women to have regular pap tests, they don't mention almost all of these "abnormal" pap tests are false positives caused by an intrinsically unreliable test and made worse by over-screening. Young women produce the most false positives and not one country in the world has shown a benefit pap testing women under 30, but all have evidence of harm. Women DON'T receive balanced information on screening, that's a fact, and our legal right to make an informed decision about screening is dismissed...screening is almost treated like a game - do what we have to do, say what we have to say, to get "them" all screened...
    We're not targets to be counted, we're entitled to make up our own mind about testing. I've never understood why it's acceptable for the profession to treat women in this way...so many women are trusting and accept medical advice without question and very often end up worse off...the fact most women don't realize they've been misled, have been over-treated or over-diagnosed (and many left with health issues) does not make it okay. I think it reflects poorly on the medical profession - there is no doubt in my mind that women's cancer screening has been hijacked by vested and political interests.

    I personally believe women need to protect themselves from these programs (especially American, Australian and German women) and our doctors (most of them anyway) - our programs operate outside the law (informed consent) and proper ethical standards and are more likely to harm us, FAR more likely with our outdated cervical screening program.

    THANK YOU SO SO MUCH for posting this!!! Yesterday I had the hardest day I've ever experience in my life in the States! I'm a 33 years old woman from Argentina, Last year my Dr asked me to do an ultrasound of my breasts and when I went to the Hospital they told me they can't do an ultrasound without doing a mammogram, so I did go thru the process of mammogram to get after an ultrasound and because they couldn't tell for both test they suggest I should go for a biopsy. I said I will think about it, because if with 2 test you can't see anything, then I'm POSITIVE I don't have anything and if I do I will rather die than go thru all this painful tests. Since last September I keep getting calls from the hospital on suggesting for me to do a biopsy till I tell then I don't have insurance anymore.... Since then, I didn't get any call!

    I switch Dr and decided to spend my money on Dr's that will seat at the office for more than 10 min, have a conversation with me! I want my Dr to ask about my family, my life, my job, etc... I don't want to be an alien juts with an insurance card! So yesterday after the Dr told me no need of mammogram just want you to have an ultrasound to make sure everything is ok, I made an appointment and went for the ultrasound. The nurse walked me into a mammogram room and said we will start your mammogram and I said no. I had one 9 months ago and I don't want another one, I'm here just for an ultrasound. She walked away and made me wait for 15 min till a Dr showed up and told me that they have to do another mammogram! I gave him my past mammogram and all the medical records and he said well is 9 months old and in this institution we do our own. I told him so then I won't do it, thank you so much for your time but I won't be expose to radiation, is not good, not healthy at all and this time I will follow my intuition and my inner voice is saying DON'T DO IT!

    He stand in front of me without looking at my eyes and saying that in his 25 years as a Dr, he never saw any person getting sick or die because of the radiation in a mammogram! I looked at him and said, if you were looking at my eyes while you talked to me, I will probably doubt for a little bit and tell you, ok lets do it, because you looked at me... But because you weren't looking at me, or trying to do any eye contact, while making me feel a stupid immigrant with a thick ascent who does't understand what are you saying!!! When I was telling you "radiation is NOT GOOD for any human being". Thank you so much for your time Dr, but I won't be expose to radiation and I will stick with my believes as you do with yours... Have a good day! Leaving the place with nurses looking at me like a weirdo woman!

    Now I know there are many woman who think and feel the way I do! Thank you so much!

    Good for you, Agustina, I love to see women stand up for themselves! I agree with you, mammograms expose you to radiation and having them in your 30's and 40's scares the life out of me...they'd inevitably lead to even more mammograms and biopsies after false positive mammograms. By the time you get to 60....that's a lot of radiation and intervention and it's a horrible way to live your life.
    A family friend is 70 and just had surgery and radiation treatment for a tiny cancer found by a mammogram...I was shocked to hear she's been having annual mammograms from age 40. It makes me wonder whether the radiation led to this cancer or whether she's been over-diagnosed...these very early cancers are concerning, because they don't really know what they've found and it now seems most of these cancers would never have progressed - you'd die with them, not from them. Early detection is not as simple a concept as they make out...
    The treatment has had a negative impact on her life and she's now receiving psych help with her diagnosis and fear of the cancer returning....and her daughter tells me she'll start annual mammograms now, at 44...
    Doctors should warn women about early and too frequent mammograms and should also properly advise women 50 and over on the risks and uncertainty of benefit with the test....the Nordic Cochrane Institute say breast screening produces only marginal benefits, but leads to significant over-diagnosis, that about 50% of screen detected cancers are over-diagnosed.... The initial report was released a decade ago, yet we carry on screening with no informed consent.
    It scares me what is aggressively and IMO, unethically promoted to women as essential preventative healthcare, when it is far more likely to harm us.

    Mammograms are all about choice. No one can force anyone to have them. So maybe the answer lies in the question: "If you discover you have breast cancer what to do plan on doing with that knowledge?" If you plan on doing nothing then the choice is clearly obvious. Do not get a mammogram. If you are not ready to die or expierence any kind of pain and or organ failures on a regular basis then the choice would be to get a mammogram yearly since they are designed to attempt to detect at early stages. They only last approximately 3 seconds for 4-6 pictures each worth the awkward discomfot vs organ failure and death. If your someone whos choice is to not want to put in a hard "fight" but maybe a small "fight". Then yearly would be a good choice but every so many years if you don't mind stage IV cancer vs stage 1. Blood test, US, MRI (if you are a canadiate) and thermalgrams are a nice additive but still cannot pick up DCIS/ calicifcations which is the one of the earliest forms of BC. Just sayin. My last comment is the new mammogram, 3D, Tomography can detect a cancer as small as 1mm. Super tiny. Compression does not have to be as hard since it takes 1mm slices throughout all that dense tissue that so desperately needs to be compressed out. So again it all comes down to what do you plan on doing if you found out you had breast cancer. If you choose the mammogram take a tylenol, cut out caffine because it promotes cyst and pain. Thank your mammographer for doing her best to save your life by compressing and properly positioning you. Also thank the Radiologist who diagnoses cancer and regulates those mammographers with a fine tooth comb so that they compress and position correctly. If you choose to do nothing then enjoy life you may have a lot or may have a little.

    Gerhard Adam
    Interesting framing of the "choices".  You're completely wrong, of course, but it is interesting how you managed to introduce your own bias and completely miss the point of the article.
    Mundus vult decipi
    Unfortunately these attitudes are fairly common, women are supposed to follow orders and if we don't we're viewed as uneducated, reckless, immature, irresponsible etc...some women turn on other women, especially those who believe they were "saved" by the screening process. Hopefully, we can change attitudes over time, all adults have the right to make up their own minds about screening and that includes saying no to testing...screening is not compulsory for women (even though it has been promoted that way for decades) and we're not naughty children if we choose not to screen for any reason.
    One of the principles for an ethical screening program is the test must be acceptable to women (or men)...yet I can never recall anyone asking women how they felt about pap tests or breast screening, we were told we must or should screen...that's not ethical cancer screening.

    I wish to have sonograms rather than mammograms. I have been diagnosed with a benign tumor and a sonogram gives a better picture of what is going on. Also, I don't want the radiation from the mammogram. The radiology centers in NYC refuse to give the sonogram without the mammogram. You just can't get it. I believe at least part of the reason is financial: mammograms are big business.
    I feel I should be able to make this health decision for myself. It's not a matter of insurance cost, because mammograms are much more expensive than sonograms. As a result, I don't have the sonogram. Even the supposedly holistic gyns pressure me to get the mammogram. I focus on prevention: limiting dairy as much as possible, eating organic, getting enough sunlight(for the vitamin D) and am looking into breast massage. Thank you for your article.

    Just recently after visiting my doctor, she ordered the standard blood work, abdominal ultrasound, and the proverbial mammography, in which the latter part made me cringe. I sit here looking at the tiny mark in the bend of my arm looking at the point where the needle was entered to extract blood, laugh it off as the vampires have struck once again, no big deal. I have yet to get the ultrasound, but it's the mammogram that sends me in a tailspin, and for the same reasons you have addressed. I came across your article after searching the google engine site wanting to know if there were other women who felt the same way I had. I was pleasantly surprised at how you addressed the issue of episiotomy because that was another issue that I was wary of since I was coerced into during the labor of my firstborn at the age of 18. I thought at the time my doctors knew best and who was I, the person who had no medical knowledge, to question any of them. Needless to say, the healing from the episiotomy came to its end shortly after the 4th week postpartum, and I swore I'd never have another one again. I kept my word on that during the 2nd and 3rd time around where I refused to have one, much to the doctor's dismay, and they both came out without even so much as a scratch down there. I was not subject to any recoveries that would result from any subsequent slicings. I have found your article to be well written with careful consideration as far as the risks involved regarding mammography testing. I, too, have the same concerns as far as exposing my breasts to any form of radiology especially when I am at low risk for breast cancer. This is by no means that I'm suggesting to anyone else not to have one as I feel it is and should be a matter of personal choice. The thought of having my breasts clamped down in a vice grip exposing healthy breast cells to unnecessary suffocation leaves me to the conclusion of forced apoptosis in addition to the radiology especially when women are subjected to the effects of the onslaught of menopause which results in breast tenderness to begin with. There has got to be better, less invasive options for women today, but that leaves the question of the profitability of a less invasive technique.

    I have no idea why my previous post went up there 16 times. This was NOT intentional and if it could be taken out, please do so. I sincerely apologize.