8,398 Comments and Counting on Blog (Blogcritics.org) Regarding Unnecessary Pap Smears

Ladies, for those of you who are fed up and still searching for some answers about all those pap tests, there is a site well worth a visit with some very interesting comments on the subject – 8,398 comments with more each day.  This link will take you to the most recent comments on the site: http://blogcritics.org/culture/article/unnecessary-pap-smears/comments-page-175/#comments  Navigating prompts to peruse all comments are near the top and bottom of each page. The comments are informative, inspirational, sometimes may move you to tears, and other times may provide a good chuckle or two. You do not need to log in if you decide to submit a comment, and any comment you wish to share will not be censored or edited. Here is one example of the comments you will find on the site: Hi Everyone, This is a very interesting and informative blog. Earlier this year I made the decision not to go for any more cervical smear tests, but wanted to research the actual risk I was taking. I started to search online for information, but only seemed to come across articles and threads that said that women ‘needed’ to have this done and that any woman not adhering to the program was irresponsible and immature. This just got my back up because they were not addressing the actual risk/benefits of either testing or not testing. I got the distinct impression that it was an unwritten rule and therefore I HAD to comply. Now I was starting to get really annoyed – I hate being patronized and treated as though I do not have the mental capacity to weigh up the pros and cons of medical screening. Anyhow, now quite fired up and still determined to find some decent information, I happened upon this site. I have diligently read from the beginning (it has taken me a couple of weeks to get to this page)and can honestly say my eyes have been opened by all the information provided. The amount of false negatives and over treatment is quite literally heart breaking and makes me really angry – as though all these women are just collateral damage and don’t matter – that they should be grateful having pieces of their bodies cut or burnt off even though there was nothing wrong with them in the first place. It’s the stuff of nightmares. I am fortunate never to have received an abnormal result. I doubt I could have coped with a colposcopy and all the associated horrors if it had turned out to be nothing. I have also been really touched by some of the harrowing experiences of many of your participants. I have had my own battles with the medical profession and can empathize with your experiences . . . Thanks girls – I feel as if I know you all a little and thanks for being there. There must be loads more like us. (Chrissy)

About forwomenseyesonly

Hi. My name is Sue and I am interested in promoting holistic and respectful health care.
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36 Responses to 8,398 Comments and Counting on Blog (Blogcritics.org) Regarding Unnecessary Pap Smears

  1. I am sure this piece of writing has touched all the internet viewers, its really really nice piece of writing on building up new website.

  2. Women of Blogcritics, I have the rudimentary beginnings of a new blog I am piecing together (a free WP blog). I thought it might be a good plan to have an additional site that we could all share and call our own. If any of you are interested in becoming co-owners/moderators just let me know and I will email you the log-in information. I have named the site “unnecessarypapsmears” and thought the first post could be a news article about the deletion of the 10,000 comments (9 years worth) on Blogcritics. If the comments on Blogcritics reappear, well then the post could be updated to reflect that change.

    An additional site could help fill the net with more options and truthful information for women searching for answers. If you became a co-owner you could poke around behind the scenes and perhaps publish a post (or two or three . . .). Also, we would not have to worry about any changes/deletions/decisions we were not a part of making.

    If some of you are interested I hope to publish the first post in a couple of weeks, hook it up to the net . . . good to go. If no one is interested we still have this site and the new blogcritics, and also Yazzmyne’s site, but some of you might want to give it a go.

  3. Great idea Sue! I too feel disappointed with the “new and improved” Blogcritics. Even if all the old comments do eventually return, still many, many new visitors will never come to that blog, because I suspect that most readers were discovering that blog by doing Google search, which was pointing them to a very close wording in one of the comments.

    In other words, all those thousands of comments were well-indexed by Google over the years. And because there were so many comments from so many different people, whatever bunch of words regarding pap smears, cervical cancer, screening or related problems a woman typed in Google, there was always something wery close to it in one of the comments. Now the blog changed its link, and Google index of all the comments is lost. So even if the comments return, they will be placed at completely different URLs. In addition,Google tends to downgrade the rank of sites who throw out lots of old pages without any proper redirects to the new ones, which means that even if returned comment are eventually indexed by Google, they will be much lower down in its search results.

    Also, the old Blogcritics had quite static comment pages, which was very good for Google indexation. Now the comments are in dynamic jump/reload/fold/unfold style, which makes it much harder for Google to index.

    So, even if Blogcritics’ promise to return all the comments will eventually come true, there will be nowhere near as many new readers able to discover the blog. And that is very sad. Because they need it the most. The old reader,s who know where the blog is, already know the truth, can make informed decisions and can protect themselves from the risks or harm; it is all those women seeking help and unbiased information who need to be able to find the blog, read those comments and become truly informed. And they will miss out.

    Therefore, I think it’s a very good idea to create something independent, something that will not suddenly destroy the most important things, something that will be reliable and will keep helping those who need help. If only it was possible to transfer all those old Blogcritics comments to your new blog somehow…

    Anyway, I’m not sure if I’m going to make a good moderator, article writer or have enough time to do it really well, but if there is a shortage of help, I’m happy to do whatever I can.

    • Thank you Anny. I’m impressed with your knowledge of Google searches, and of how you explained the tragedy of losing the old format on Blogcritics. I remember when I first discovered the forum on unnecessary pap smears I felt I had discovered a slice of heaven on earth. Finding the facts that were supported by actual research was akin to being released from a prison sentence and it is a very sad thought that other women might not able to find the site. But I had not been using the correct search terms until I was cued on how to search from a comment by Elizabeth on a different forum; Elizabeth is a blog unto herself (thank you Elizabeth!). I’m having a hard time wrapping my head around the loss of the comments and keep checking each day to see if they have been put back. I appreciate your offer to help with a new site. I don’t have much time to devote to it at the moment, but will have more time in the next couple weeks or so. I will send you log-in information once I have a better idea of how to go about setting up multiple owner access, and once my draft of a post is published so there will be something more tangible to log-in to. I am currently searching for a WP theme that supports comments well. The “Able” WP theme looks pretty good as it appears to segue into comments fairly seamlessly.

      • I hope Elizabeth will express some interest in the new site, because she definitely has lots of information on the topic, plus her writing talent.

        However, I’ve been thinking a bit more of the creation of a new site, and I’m still not sure whether splitting the discussion and accumulation of comments from, say, this site, is going to be the best approach. Perhaps, adding more articles to the existing site and attracting more audience here is going to work better. Hard to say at this stage, because you may have a better comment support in you plans for the new site or something like that. However, I did noticed that the comments written on this site are beings indexed by google quite well. Most probably, for as long as new information, facts, research and evidence is regularly published, put out for discussion, and indexed by search engines, it should be helpful to people regardless of which site it is on: this one or a new one.

  4. Elizabeth (Aust) says:

    I’m interested in any site that provides real information, promotes informed consent and evidence based screening and is a safe place for women to vent/share. I waited decades for something like that to be created. I’d prefer not to be a moderator, but will certainly be part of any new community.
    I like to keep an eye on the internet and post wherever I can…and hopefully, spread the word – we have a choice (yes OR no) and if we want to test, there are better options out there, they’re just not being offered to you. This takes a few hours every week.

    I posted to The Telegraph yesterday and a Canadian medical researcher has responded…he says annual pap testing is still recommended in Canada? That’s not right, my research shows current recommendations are 3 yearly from 25. Am I right?

    He also, presents pap testing as simple, cheap etc….not one word on potentially harmful over-treatment and unnecessary/excessive testing.

    He also, appears to be promoting breast self-exams and mammograms…the former has been out for quite some time here and in many other countries, it doesn’t help and just leads to excess biopsies. Mammograms, well, women should do their reading and make up their own minds. (The NCI summary would be a good first step)
    He also, appears to be critical of meta-analysis and therefore seems to be dismissing the Cochrane Review on breast screening. I guess the argument is: no benefit at population level, but it might help individual women. Screening certainly has never been promoted in that way, we’re regularly told the fall in the death rate is about screening…when it’s mostly about better treatments.

    Do I dissuade women from screening?
    I don’t tell women what to do, (as he seems to be doing) but I’ll argue until I’m blue in the face that women should be given ALL of the information and left to decide for themselves, yes or no. We should also, be offered evidence based HPV primary testing and HPV self-testing.

    He also, uses scare tactics to make his point, I prefer to use the evidence. I assume he’s talking about Jade Goody, I don’t take medical advice from celebrities or react to scare tactics. Also, Jade Goody had an adenocarcinoma and the pap test usually misses this even rarer form of cervical cancer, so if you’re really concerned about women and cc, you wouldn’t be defending over-screening with the pap test and ignoring HPV primary testing and self-testing.

    I may not have a medical degree or be a medical researcher, but I could shoot a cannon through many of his arguments.

    Thanks for his advice, but I’ll stay with the evidence, the Nordic Cochrane Institute, Professor Baum etc. Anyone who’d promote annual pap testing and breast self-exams is IMO, not someone following the evidence. If women want to do self-examination…they should be told it’s not recommended and why…so they know where they stand. Excess and non-evidence based screening just sends risk way up…IMO, not a good deal for women.

    When I say I don’t dissuade women, if women read the NCI report or review the Delphi Screener and Dutch program and decide to act on it, that’s their absolute right. When these programs do not follow the evidence, women often can’t rely on their doctor or the media to get to real information. We have to find it for ourselves and make the decision that sits best with us, even if that goes against recommendations….it’s called making an informed decision/informed consent. Why is it that concept throws so many into a frenzy of concern?

    I would use strong language though to urge those under 25 to do their reading before agreeing to pap testing, or any woman having annual or 2 yearly pap testing…also, women under 50 having mammograms, or having “annual” mammograms at any age…all that hidden risk, and women doing what they “think” is best for their health.

    I’m also, not “one woman on the internet”, some basic research points to the futility and risk with BSE and annual pap testing AND to the benefits and reduced risk with HPV primary testing. (stand alone testing, not as part of population pap testing)
    http://www.telegraph.co.uk/health/healthnews/10111562/Breast-cancer-screening-fails-to-cut-deaths.html#comment-928223455

  5. Elizabeth (Aust) says:

    “I waited decades for something like that to be created.”

    Of course, I’ve been in heaven with Blogcritics, this site and a couple of others. Dr Sherman’s site is also, good, but I think some women are uncomfortable posting on a doctor’s website.
    It still amazes me they were able to silence women, critics and others (including some doctors) for so long, decades…and to keep many women compliant and completely in the dark.
    Censorship WAS used…I felt the full force of it on many occasions.

    • F.L. says:

      I agree. And I worry about what is going on with the Blogcritics site? I know they say the comments are going to be re-posted, but it’s been a loooonnnnnggggg time. Although I didn’t post there, I did go there often, and the site had such a rich and deep history of comments. I might sound paranoid, but could this be a form of censorship? Is this a way of removing the multitude of voices from close to a decade and making them start over? If the site doesn’t restore the comments, I don’t see it as a safe place to visit any more.

  6. Anny you make good points about the searchability of this site, and how it might be better to keep the focus on the growth of this one. Also thank you for the vote of confidence. However, it also would be nice to have an additional option for women searching the net. Even if this site comes up high on the Google list many women might pass it by. If there were another site in addition to this one it would double the odds for women to be able to find truthful information. Over time the new site would continue to grow and eventually move up in terms of searchability. As well, it might be nice for others to have the option to contribute publishable posts to the site, and to have access to what goes on behind the scenes if they chose to do so. Finally, yes, it would be a blog with a theme that supports comments well. On this site the comments can become difficult to find over time, but we could set up the new site so that wouldn’t happen.

    On Blogcritics now I have lost that sense of coming home to a place where I could let my hair down, speak my mind, and get comfort from other like minded and informed women. Maybe it is about feeling a loss of control and trust. When I visit the site now it is only to see if the comments have been replaced, and when I see they haven’t been that feeling of loss keeps getting bigger. Plus I really dislike having the picture of Angelina above the comments. I might get back into posting there over time but I don’t feel up to it just yet.

    Elizabeth, as I’ve said before, you really are a blog unit all your own 🙂 What you do is so effective as it gives women a snapshot of truth on many different sites. It was one of your comments that cued me how to search for information, I then found blogcritics, and here we are. It was an electrifying moment when I saw your comment, complete with references to research and facts that made sense. I’m glad you would support a new site as your comments are good as gold. I believe those few hours you spend each week have done more to promote change than anything else has.

  7. Michelle Ortlipp says:

    I have only just found these sites and the information on mammogram screening programs. I am so disappointed that my GP who I had absolute trust in (woman doctor) did not tell me the cons of mammogram screening. She seemed so modern and informed but she just automatically sent me off for a mammogram when I turned 50 and she has done biannual Pap smears for me also. I have never seen the information pamphlet from Breast Screen here in Australia because I was sent by my doctor, not “invited”, but I have been aware of the push for screening through advertising, all of it only about haiw it saves lives and finds cancers when they are small. I am now appalled to find that being found early may not be the best thing for a woman because of over diagnosis and over treatment.

    I have come to these blogs and the research only because I had a recall from my mammogram this year and I started to become more interested in the state of play around recall. Now I have seen the recall pamphlet and it gives all the good news stats of 1 in 10 women recalled will not have cancer. Unfortunately it did not help me to avoid sheer terror and a month of feeling like I was already on the path to being a breast cancer survivor! I spent the month vacillating between feeling I would not be the one out of ten, and feeling highly anxious no matter how rational I tried to be. What has made me so angry is that they made an appointment for me for the assessment clinic and asked me to confirm it, then when I rang to ask more would not tell me anything. I was going overseas the day that the appointment was scheduled and all they could offer was a slightly earlier date at a service 2 hours from where I live. When I asked was it vital I go on that date or could I wait til I got back she said that most women really want to know either way and opt to travel if it means an earlier appointment. When I said that I wondered if the recall was related to breast density she said no, I just know that there is something in one breast they want to look at. So I accepted the appointment and started looking at what was being said about mammogram on the internet. I also suffered from terrible anxiety due to the lack of information and the long wait even for the earlier appointment. I went to my doctor after two weeks of agony and she said she had no more information than me but if I wanted she could refer me to a private diagnostic service, which I did because I could get an appointment quickly.

    Well, on the early train to Melbourne the day after signing the forms to request the films from breastscreen I got a phone call at 8.30 am from breast screen wanting me to confirm that I was going private and then proceeding to ask if I was aware of the implications of going private. I said what implications could there be? She said that if for some reason I was not happy with the private service, for example, if I needed a biopsy she was not sure I would be able to have it on the same day, and did the private clinic give women their results there and then like breastscreen does at assessment clinics? If I was not happy with the private service I could not retrain to breast screen – for this “episode”. She then gave me the spiel about what happens at an assessment appointment, how I would get to speak with the breast doctor, breast nurse, radiologist and so on. I replied that this over the top approach only made me feel more anxious and I did not like the idea of a room full of petrified women waiting for more tests on recall. I told her I had made an informed choice as much as I could based on the poor information from breast screen. She said what did I want to know. I said I would have expected my doctor to have the radiologist report detailing what had been seen and where – was it a shadow, calcifications etc. She shuffled some papers and then said, it is the right breast, upper right quadrant. I said could she please ensure that this information, and the radiologist report from the screening that resulted in the recall be included with the copies of my screening mammogram when she sent them over to the private clinic. She agreed to do this. She was very nice but quite patronising, telling me she could tell I was very intelligent and had made an informed decision and I was not just cancelling with breast screen because the date didn’t suit.

    Well, then I rang the private clinic and said that I would not be having a bilateral mammogram (my doctor had written that on the referral because she was not privy to the information I now had) and the very youg receptionist told me that they had to do what the doctor had asked for, it was the law! I said that it is my body Thankyou very much and I would not be having a mammogram of both breasts. I contacted my doctor, told hear the story and she sent a revised referral. On the day of the appointment as I was being shown to the room for the mammogram I asked the person who was to do the mammogram whether they had the radiologists report and knew exactly where they would be focusing. She said, no, they only had the films! I was furious. She said that their radiologist would view the films and my previous ones from 2012 (which I luckily had due to moving states) and hopefully he would be able to see what it was breast screen had been concerned about. At that point in time I figured it might be better if he couldn’t! Anyway she did two x-rays and then I went to ultrasound. The technichian seemed to be taking for ever on one spot, the place the other one had put a mark on. After she finished she said she had to check with the doctor that I could go but she thought that on this of assign the doctor might want to come and see me. That really scared me. So they both came back and the doctor must have seen I was terrified and he said “don’t worry, I don’t have bad news for you. I just wanted to do a breast exam and look a bit more on the ultrasound”. He told me that what had looked like a significant change in the right breast on the screening film was not ther on the diagnostic films, just nothing significant at all. He seemed a bit amazed at this. There was also nothing abnormal on the ultrasound, and he couldn’t feel anything except my ribs on the exam (I am very small breasted and carry no weight on my upper body). He did look at one small spot but said it did not look like anything but ductal tissue (or something like that). He did ask, however, if he could just keep my breast screen images til HOS esteemed colleague was back and he wanted her to have a look. Wish he didn’t say that as there remains a small worry that she, with her more expert eye (she is head of Breast screen NSW and renounced for being good at reading mammograms and ultra sounds, but hopefully that means she would not over diagnose). Perhaps I should have said, no thanks, I will just take my films and go? But you feel vulnerable and when the doctor suggests something when you are still in a panicked state of mind you are not thinking logically! I did not feel really relieved, I felt numb and still do. I also still feel incredibly angry at how powerless I felt at getting information.

    So I have now decided that I won’t be participating in breast screening, or Pap smear testing and will be sharing the research Elisabeth (from Australia) has pointed me to during this awful time with as many of my friends as possible. I will also be taking it to my doctor when I go to her again and ask her why she did not think to inform me of this research, which was well and truly about before she sent me for my first mammogram. I would also like to get the local paper onto this issue to spread the word to local women. I can even see myself standing out the front of breast screen with copies of the Pamphlet from Denmark (think this was the country but you know which one I mean) and distribute it to women going in for their screen!

    Thankyou for the fabulous blog – I gave read Elisabeth’s posts on other blogs also. I have read as much as I could in the last month and feel at peace with my decision.
    Michell

    • Elizabeth (Aust) says:

      Welcome Michelle, the one thing that keeps me posting and challenging is pure outrage, that women are cut out of the decision making process with cervical and breast cancer screening. Somehow the system thinks it’s fine to give women a misleading pro-screening presentation or just order them to screen, (even using unethical and coercive measures) pushing to achieve a govt-set target. There is no respect for informed consent (or even consent itself) in women’s cancer screening.
      So others accept risk on our behalf….they do NOT have that right.

      Your experience would be dismissed, “she might have had cancer”…”better to be safe than sorry”…I couldn’t disagree more, we have a legal right to protect ourselves from screening that doesn’t pass our risk v benefit assessment. To do that we need access to real information, not propaganda. I couldn’t care less that Evonne Goolagong, Jo Hall and Deborah Hutton think we should screen, it’s disrespectful at the very least to reduce it to, “it’s free, takes 10 minutes, and it’s with a woman”.
      No mention of over-diagnosis, over-treatment, risks v benefits – do the risks exceed any benefit? False positives, psych issues etc.
      These women are IMO, being used by Breast Screen as well, and they’ve made a serious mistake, they’ve trusted Breast Screen.

      There are studies that show the stress from a false positive and the aftermath is severe and lasts for many months, sometimes years. Yet it’s always dismissed as a minor consideration. (no one bothered to ask us, as usual they tell us how we should feel)

      The target is unachievable, they will never get 70% of women aged 50 to 70 through the door, so IMO, that’s partly why they’re now planning to drag in those aged up to 74. Of course, this is likely to lead to even more over-diagnosis, there is certainly no evidence of benefit.
      Politics is the other reason, women’s healthcare is a winner, even if you do nothing or little more than distress and harm (even kill) women, as long as it “looks” like it’s working, that’s all that matters in this country.

      Australia has VERY few doctors speaking out and challenging these programs, few warning/informing women. The silence is deafening.
      I think this is a damning indictment of our medical profession. Those brave enough to speak out have only done so recently, that says a lot about the “climate” in this country that silences those who might criticize the program or inform women. Does this sound like ethical and legal cancer screening? It says to me we have a powerful screening lobby working to protect these programs and their interests, not us.

      I’m pleased you now have the information you need to make an informed decision about screening, let me know if you’d like some more references.
      Welcome to our community. I could feel your pain and outrage, you’ve joined our ranks.
      Breast Screen is going to feel real heat as more women join the ranks of the informed. (and outraged)
      I know my sense of outrage has never diminished…how dare they treat women in this appalling way.
      Your doctor will probably say that while there’s a govt-funded program, she has to recommend it or, medical “experts” have decided it’s in our best interests. She may point out there is a disagreement about numbers, “but the program does save lives, it might save your life”. (that’s a popular one)
      She may also, say that “most” doctors and scientists agree mammograms save lives, and at the moment we can’t avoid over-diagnosis, we can’t tell the difference between the cancers that would progress and those that won’t threaten the woman’s life. She may say the numbers over-diagnosed are quite small.
      I’ve found many GPs have a poor understanding of screening and the evidence, they just accept the biased presentation provided by these programs. (and of course, they get target payments for pap testing)
      Most women don’t take legal action even if they’ve been seriously injured by over-treatment, so some consider risk is greater if women don’t screen and later get a cancer diagnosis. This is skewed thinking that comes about when you take women out of the decision making process, they KNOW women can’t make an informed decision on the basis of the information that’s provided by Breast Screen and others.

      Of course, if you give women all of the information they need to make an informed decision, leave the decision to us, the responsibility for that decision rests with each individual woman. (as we see with prostate screening) This seems to freak out the medical profession and others, why? The thinking seems to be, men can make healthcare decisions, while others have to do that for women.

      Some women say to me, “No mammograms, what if you get breast cancer?”
      My answer is, so be it, there will be no regret about breast screening, I’ve made an informed decision after reviewing all of the evidence. Given the one-sided spiel we get with screening, many women don’t see that screening carries risk, the only risk they see is not screening.
      Please keep us updated. I’d love to be a fly on the wall when you speak to your doctor about all of this…more doctors need to be challenged, what’s happening at the moment, (and has been for decades) is plain wrong on every level.

      • Alex says:

        About things LOOKING like it’s working, I believe all that connecting of false dots is called “specious reasoning.” Not for nothing, but them saying something conveys THAT information- not necessarily true information, but there’s frequently something of a knee-jerk presumption of honesty & accuracy that people have. That reflexive trust isn’t always misplaced (especially since it IS pretty weird for people to lie at random), but that trust is used against people.

        This is espcecially true if there’s some trust because of some supposed certification process or a belief in someone being trustably aligned in order to get into a certain profession. Think about it: You never even see what these parameters for certification are! How hard is it for someone to lie convincingly when they are confident that they’ll be believed?

        Just figured I’d make those points, as it can be useful information.

      • adawells says:

        Hi Elizabeth,
        I did actually fire off a few emails and letters to various people, and did get a reply from the Patient Advice and Liaison Service (PALS). You must have something similar in Oz, and they act as intermediaries helping patients using healthcare if they’ve had any problems. They were very good to me, and actually got me another appointment, when I walked out of my initial consultation. How much of what I wrote has been actioned upon is another matter. I very much get the feeling that they all feel that the problem is with the woman, who may have had a bad experience, so you’ll get a “There, there” letter telling you how they are taking your complaint very seriously, and so sorry for the pain it caused you, but they don’t accept that it is their system which is wrong. However something did bring a smile to my face when I recently checked out the rate and review web pages of my local hospital. A recent visitor to the gynae dept. had written how she had been dreading her referral and did not want to attend, because of bad experiences in the past. The gynae dept was alerted to this and made a special effort to make her feel welcome and cared for when she arrived. She said she was kept fully informed and respectfully and kindly treated in every possible way. Maybe my letter did hit home after all?

      • adawells says:

        And another thing I wanted to comment on was Elizabeth’s statement:

        Some women say to me, “No mammograms, what if you get breast cancer?”

        This kind of talk annoys me greatly, because so many women assume that if they do not go for screening they will not get treatment for a cancer if they are found to develop one. If you get cancer, you go and get treatment, not screening. They always assume that if you don’t go along to screening, this equates with not being able to get treatment for the disease, should it appear. This mode of thinking has been created by the cancer screening programmes themselves, making women believe healthcare as being only available through compliance with regular call-ups and recalls.

      • Elizabeth (Aust) says:

        Ada
        I think the statement, “no mammograms, what if you get breast cancer?” also, means some women think a mammogram “protects” you from breast cancer. Some feel I’ll regret my decision IF I get breast cancer, I won’t…
        The evidence says the risks of screening exceed any benefit, so those having mammograms are taking a bigger risk and it can also, be a life-threatening risk, but women have only been trained to see risk with NO screening.
        I’ve made the best decision possible, an informed decision, after reviewing all of the evidence. (how many women can say that?) I can’t do something that makes no sense to me, that exposes me to serious risk, and I cannot hand my body over and trust these people to do what’s best for me. (like leaving Dracula in charge of the blood bank!)
        I only have one body and one life, so I’ll make these decisions.

        I blame these programs and their supporters for the targeted and persistent campaign to brainwash women, to just do it, the “all women must screen” thinking.
        So pleased you fired off those emails, I knew you would, just reading that account in the consult room reminded me of the saying, “don’t poke a sleeping tiger”.
        I believe every complaint is worthwhile, for too long silence reigned, I believe the only way to change the system is for more women to stand firm, complain, refuse, challenge, report etc.
        Our screening rates are falling for a reason, more women smell a rat and are walking away and now there are more informed women around, I’m heartened to see so many critical responses these days to the pro-screening rubbish in the papers etc. So nice to be one of many informed women. (although some papers mainly attract comments that come from an uninformed base, like the Daily Mail)

        One thing that still amazes me, when you’re informed, you “see” just how poorly women are viewed and treated by these programs and their supporters…sometimes I sit back and shake my head at the shocking manipulation of trusting women.

      • adawells says:

        I agree with you that every complaint is worth making. Some seed falls on stony ground, but I do believe the message is getting through. A large number of young pro-screeners, on the Daily Mail website and elsewhere, are now asking what is the harm of screening young women? Clearly the message that it can be harmful has got through, they have heard of harms mentioned, but they are confused as to what the harm can be. I saw your response to one of the Daily Mail comments pages. People do read these, and if the seed of doubt is sown it gets women thinking. I saw some Daily Mail commenters wondering why so many people had given red thumbs down on such screening stories. They are starting to see that their crusades to get every woman screened are not meeting widespread approval. They are not getting the adulation they are hoping for on these websites. If they get loads of red thumbs down, they will stop posting their rubbish, and trying to get endorsement for their views. These screening programmes need 70-80% coverage to make them viable. In the UK it is about 78% screen every 5 years, only about 73% screen every 3 years. We just need to get about 10% of people to change their minds to bring the whole programme into question.

    • Alice (Australia) says:

      Michelle, I’m sorry to hear about the load of unnecessary and avoidable worries you were put thought by our “one of the world’s best health care systems”.

      Unfortunately, the Australian medical system doesn’t care about psychological harm it causes to the patients by withholding the information from them, and has absolutely no respect for the patients’ rights to have full access to their health records.

      AustralIan patients are pushed from doctor to doctor, from clinic to clinic, with very little explanations about their health situation. All the important details are passed from doctor to doctor, bypassing the patient. We are basically at the doctor’s mercy: if the doctor feels like it, he/she will tell us the truth, if not — we will be told the useless minimum. In short, the Australian medical approach is: the patient pays (directly, or via taxes) for the tests and diagnostics, but the results are the doctors property; the more the patients are kept in the dark, the better, otherwise they will ask difficult questions and may ruin the money-making screening conveyor belt routines Australia “successfully” has in place.

      It was absolutely appalling that you were unable to change the bilateral mammogram to a single breast without the unnecessary hassle with your doctor sending an amended referral. They don’t get it that it is YOUR body, and therefore musy be YOUR choice, yours alone. First, the medical system witheld the important information from you, and then it did not allow you to act on the new information to avoid the unnecessary radiation. This just shows how little they care about our health and safety. All they want is money and to cover their backs from possible lawsuits!

      Ultrasounds are much more precise and much safer than mammograms, but they are more time-consuming, and therefore, less profitable. They are also less likely to result in overdiagnosis, which means no extra money to be made from overtretment. Our health is the least concer of our health system. It just wants to keep taking our money through taxes, Medicare levy, Medicare surcharge or forced private health insurance, and then do everything it can to make more money on ruining our health.

      I am glad you are fine. It is just so sad that in a developed country like Asutralia we are managing to stay healthy despite the health system rather than thanks to it.

      Thanks to people like our Elizabeth, we at least have access to some true information, if we become distrustful of the doctors enough to start searching for the truth.

      Stay well, and don’t trust the doctors.

  8. Elizabeth (Aust) says:

    http://annfammed.org/content/11/2/106.full
    Michelle, one of the articles on the effect of false positives in breast screening. (2013)

    • Michelle Ortlipp says:

      Thankyou everyone for your responses, I will keep in touch with this community and when next at my doctor I will be tackling the issue and will get back to you on it (might be a while before I am back at a doctors though – it will likely be when she contacts me for not attending for my pap smear next year!).

      Thanks Elizabeth for this interesting article. The results of this research resonate with me at this point in time. I don’t know how long I am going to be feeling the way I do but I hope it does not take 36 months to get over it. I still feel numb, I do not feel as calm and healthy as I did before. I always felt that I’d be long lived and have no serious health issues because I live a healthy lifestyle (which took a beating for the month I was awaiting the assessment – had to have a large glass of wine every night!), and have genes on my side – two of my grandparents lived into their early nineties and my maternal grandmother lived til 100 and one month. She would never have had a mammogram or pap smear. I was beginning to feel a silly for continuing to feel a bit stressed and anxious about the whole experience, especially after talking with my sisters, both or whom have had a recall and did not experience such anxiety as I did. Perhaps I am not as optimistic as they are, but one was recalled after her first screening and I understand this is more common. The other one didn’t know what the reason was but wasn’t too worried as she believed the odds were with her. She was told at the assessment centre that she had some breast density, more common in younger women. She was quite chuffed at that and boasted she had breasts like a 20 year old :).

      Now that I have read more I understand that density is actually a risk factor, at least it makes it more difficult for a cancer to be seen on mammogram and ultrasound is needed. Yet she is convinced that it is worth the risks to return to screening and has every intention of doing so even after I’ve told her what I have read about the cons of screening. She sent me a list of links to research – pros and cons (most of which I had seen) and said that she agreed it was up to me but I needed to see both sides – as if I hadn’t already seen all the pros of screening. This sister is a medical scientist and she seems to trust the medical system. She said that she couldn’t believe that the Government would implement screening if the pros did not outweigh the cons. My experiences suggests that they have targets and the mammogram screening is political as much as it is medical. Anyway, I won’t be discussing it with her again as I don’t want to damage our relationship. She is very pragmatic and relaxed and I guess I am more emotional and tend to a higher level of anxiety, suspicion, and anger!

      Elizabeth did you read some of the replies to that article? One critical reply was all about why the authors had not identified the status of the women who had been recalled – they referred to US categories (1-5) where the recall was identified as being for a technical issue or just “further investigations” or definitely something suspicious. The reply author obviously doesn’t understand the shortcomings of other systems, like ours, where everyone recalled is considered the same and the word breast cancer is mentioned, although the stress is on the fact that being recalled does not mean you have cancer or are likely to be diagnosed with cancer. I would have thought that if a screening image was poor a new image would be taken there and then, which has happened to me before – I’ve had to have the images redone because they were not clear. So to my mind those recalled in Australia are recalled because the screening shows something the radiologists think looks suspicious, or there is breast density that makes it difficult to read the x-ray. It is the lack of detail provided that is the issue. I would not have felt more anxious if I’d been able to go to my doctor and discuss the radiologist report with her and know that there was an area in a certain part of a particular breast that looked suspicious and they needed to investigate it further. It is not helpful to know that they just want to do further investigations as you immediately think something concerning has been spotted! I can understand how the study found that women became anxious again just at the thought of an upcoming screening, or getting the letter. I’m not going to wait to get the reminder. I am going to ring, or write to Breast Screen NSW and ask to be removed from their program. I tore up the recall letter and pamphlet in disgust and anger just today when I found it amongst some papers. Just seeing it brought back anxious feelings. I might even go and talk to a good counsellor if I don’t start feeling better soon. I’ve been doing yoga and using the yoga nidra as way of coping with my feelings. Maybe I just need a good cry, which I haven’t had yet.

      Elizabeth, (and others of course), have you seen this article? This is a link my sister sent me so that I have a balanced view of the positives of screening. I’ve struggled a bit to understand it as it is highly quantitative and involves complicated statistical analyses. I actually have a PhD but it is in education and I do qualitative research (which the medical profession could benefit from IMO). I’d actually love to do a feminist poststructuralist study on women’s perceptions of the screening process – what medical discourses do we have access to, how are we being positioned in and through particular medical and health discourses etc etc. But that is another story. For now, I’d love some of you to read this article and tell me what you think. It is the claim of a 28% reduction in deaths from BC after invitation to screen that really gets me, and is what would have caught my sister’s eye. I am wondering whether this is just like the spurious 25% mentioned in an article that critiques screening and how the benefits are reported. That is, it it not reporting absolute benefit. I found this explanation useful: “The research shows that among 1,000 women over 50 who undergo annual mammography screening for 10 years, there will be three women who die from breast cancer. Of the 1,000 women who don’t get the screening, there will be four women who die. This is called the absolute benefit: one women in 1,000 over 10 years (4-3=1). Another way to look at this is to see that three is “25 per cent less than” four. So if you have something that reduces your risk of death from four to three, that’s a drop of 25 per cent. If you find that statistical trick a little deceptive, you’re not alone.”

      Article link: http://www.bmj.com/content/348/bmj.g3701

      Michelle

      • Alice (Australia) says:

        Michelle, regardig your words “This sister is a medical scientist and she seems to trust the medical system. She said that she couldn’t believe that the Government would implement screening if the pros did not outweigh the cons. My experiences suggests that they have targets and the mammogram screening is political as much as it is medical” — you are absolutely right.

        Unfortunately, there is a misconception, surprisingly common in scientific circles, that Australian government wouldn’t sanction a wrong thing. The sad truth is — it can, and it does all the time. In rare cases, when the wrongdoing gets exposed and the public outcry is too loud, it issues an official apology. Sometimes it also apologises when, at the given moment, the political gain from the apology is greater than the gain from the wrongful deed. But most of the time the federal and state governments get away with absolutely atrocious deeds. They tortured single mothers and took away their babies, they criminalised women’s rights to abortions, they raided the clinics that gave women the control over their lives and preformed abortions, they covered corruption, they spied, they lied, they killed… And they definitely can sacrifice the wellbeing of an individual (like yourself) to a greater political and monetary gain of the industrial-scale screening program, which chews through the female population like a monstrous processing machine and spits out whatever doesn’t match its set guidelines and averaged numbers.

        The only way to avoid being harmed by this machine is to have zero trust, to research and question everything. The screening guidelines are set for the maximum speed and profits, and so don’t rarely reflect the unique bodies of every single woman — hence the massive amount of misdiagnoses, overtreatment and harm.

      • adawells says:

        Just found this column recently and wanted to add about the thalidomide scandal too. The medical profession was entirely trusted with this drug, but the devastating effect of it couldn’t have been more obvious. It’s another reason not to trust the medical profession. The damage caused to women through cancer screening is not so obvious, so women don’t realise how prevalent it is.
        When seeking treatment for my womb cancer late last year, the gyn. ocologist asked me why I didn’t get pap tests and I told him I didn’t do screening because it was a violation of my human rights. He told me that I was justified in leaving the mammograms alone but not the smear tests. I thought he was only saying that because it’s his turf, and that comment made me very angry, because it made me feel the womb cancer was my fault. I suddenly began to see how the cancer blame game affects so many people – the more propaganda they put out that cancer is preventable, the more cancer victims feel that they or someone or some procedure failure has caused their disease. He could have said he respected my decision, and that would have made me feel a whole lot better. Instead the demands “Where are your smear tests?”, “Why don’t you have any?” made me feel I was responsible for getting womb cancer – something that hours of research has proved otherwise, but they could have told me that in a few minutes. I should not have been made to feel like that for months on end. Even now, if I happen to mention I opted out of the cervical screening programme, I get a look that says, so that’s why you ended up with womb cancer. Sadly, this includes a few close family members too…

      • Elizabeth (Aust) says:

        Ada
        It has always amazed me that everyone in medicine seems to consider pap testing a law, or at least, you’d be crazy or silly not to have them.
        Whereas screening is supposed to be about weighing up the risks and benefits. The chance of benefiting from a pap test is VERY low, while the risk of an unnecessary procedure that might harm you is high.
        Yet the latter is wiped away and the focus is on the highly unlikely case that you’ll benefit.

        Dr McCartney has weighed it all up and chosen not to have pap tests, incredible that her colleagues don’t seem to think she has that right or that she’s behaving irresponsibly.

        The blame game is an old standard in women’s cancer screening, but you don’t see this tactic in bowel or prostate screening. So often Papscreen and others will talk a poor un-screened woman with cc into a campaign, urging women to do what they “omitted” to do. It’s a shameful way to treat someone, using them to scare others. So often you find this woman had an adenocarcinoma, so it’s unlikely a pap test would have helped, it might have hindered. Regardless, it should be our choice.
        No one is pointing to the masses of women who endure unnecessary procedures (many of them HPV-) and asking questions, it seems women don’t matter all that much, it all comes back to others know best and do as you’re told or you deserve what you get.

        I’ve also, read many times that pap testing is not a screening test for uterine cancer, by the time it “might” trigger an abnormal pap test the woman is likely to be symptomatic. I hate the way they’re happy to mislead if it drives more women in for screening.

        That doctor was wrong to just expect all women to have pap testing, like ignorant sheep, I’m sure he wouldn’t appreciate someone speaking to him like that if he chooses not to have bowel screening. Women have been treated so badly for so long that many can’t see the wood for the trees, even when it’s pointed out to them. The blame game is another dirty tactic, no different to the crying child in the pap test campaign poster, how could any reasonable person think this is informing women of risk and benefit and extending the “offer” of a pap test? For too long doctors have made women uncomfortable in the consult room simply because they want a say in what happens to their body, thankfully, more women are starting to challenge this archaic thinking.

      • adawells says:

        Thanks for your reply. I’ve researched pap tests and womb cancer extensively, and am absolutely certain it would not have changed anything at all for me. It is a case of them struggling to find another use for the pap test to justify its huge expense and offset the harm it causes.
        I have read in medical journals that there are some cases of endometrial cells being caught on a smear test, but it is always AFTER the symptoms have become evident anyway. Speaking of which, I just happened to read on this website a whole load of posts from women who have developed cervical stenosis as a result of repeated “treatment” for abnormal cells, so that their cervices have closed shut and no blood can get out at all. They are having to get dilated just to release the blood from their period. If these women were to develop womb cancer there is no way that the symptomatic post-menopausal bleeding could get out, and they could have this condition for some time, and have no signs, maybe not presenting until a late cancer stage, because there would be no spotting able to break through. In such a case the pap test would have prevented womb cancer from making its earliest symptoms obvious, and be a cause of late diagnosis.
        I was asked by 2 different consultants at the hospital about smears. The second time was after I came round from the GA after having the hysteroscopy and they cheerfully came round the bed to tell me I’d be back for a hysterectomy, like I’d won a raffle prize or something. They’d obviously been trying to locate my smear test results after the op and had not been able to find any. I would like to have known why, and what they hoped to find from them. It was exactly a week later that the results of their biopsy showed that it was cancer. How could smear tests have helped them? If I had been a regular attender of paps and an abnormality had been found I would have been recalled, and suffered a hysterectomy even earlier, before the menopause. I do not see how the pap test could have helped at all.

      • Elizabeth (Aust) says:

        I agree with you Ada, they probably wanted to know about pap tests because they just expect the results to form part of your medical history. I also, know they keep track of women who’ve been diagnosed with cc and compare it to their pap test records etc.
        I wouldn’t be surprised if they’ve decided to do that with uterine cancer as well so they can sell them to more women as the significance of being HPV- and HPV+ starts to spread. The plotting never ends…

        I know they’re madly working on the pap test hoping it can be used to detect uterine and ovarian cancer, so the money making can continue long after HPV self-testing and primary testing takes most women out of pap testing. Even in countries that intend to over-screen with the HPV primary test, keeping women on the program for most of their adult life, more women WILL work out it’s about profits, not their health.
        They’d prefer to add the HPV test to the pap testing program, they just have to find a way, the HPV test to screen for cc and the pap test for ovarian and uterine.

        We had several posts over at Blogcritics from young women with cervical stenosis after laser treatments and cervical incompetence after cone biopsies. One of those posts has stayed with me, her health and life was destroyed by an early pap test, she was still facing more surgery to try and open her cervix.

        They never talk about these women, they don’t exist as far as they’re concerned or it’s justified, “she might have had a real problem”, “we had to check she was okay” or “we “might” have saved a life”.
        I wonder just how many women have had their lives destroyed by this “simple” screening test. If you look at some of the US women’s health sites there are LOTS of women, most of them under 35, with cervical stenosis or cervical incompetence after an early treatment for “pre-cancerous” cells.

      • Elizabeth (Aust) says:

        Ada

        Would there be any value sending that doctor an email or letter, it irks me these doctors so often have the last word or get away with inappropriate statements?

    • Karen says:

      Michelle- sorry to hear about your ordeal. Your sister sounds very naive if she think politics (health policies included) is done with keeping her individual best interest in sight. I wonder how she would explain away forced sterilisations and adoptions in Australia… Actually there are some poststructuralist-feminist analyses on the topic, for example http://leicester.academia.edu/NatalieArmstrong she actually wrote a foucauldian analysis on women’s negotiations with the discourse of the programme http://eprints.nottingham.ac.uk/10485/1/Full_Thesis.pdf and there is a book on the sociology of screening. http://www.amazon.co.uk/The-Sociology-Medical-Screening-Perspectives-ebook/dp/B008BQ4JHU
      Also: http://www.lancaster.ac.uk/fass/centres/css/profiles/vicky-singleton
      and there is some science and technology studies stuff http://www.academia.edu/1272133/Making_the_Pap_smear_into_theright_toolfor_the_job_cervical_cancer_screening_in_the_USA_circa_1940-95 I found this one very good, but personally for me medical anthropology and radical feminist analyses(like Mary Daly) were the most useful.

      • Michelle says:

        Thankyou Karen, I have accessed Natalie’s thesis and saved it. Couldn’t access the articles as I don’t have a google account (that I can recall the password for) and I am not on FB (amazing but true). I would not say my sister is naive, she is very well educated and well read but just very pragmatic and laid back. I guess I just felt that my experience was perhaps glossed over by her belief in the system and I felt my views had been dismissed as over reaction. Don’t get me wrong, I know this was not her intention, it was my response to her response only. She is more logical and measured than me and she did send me articles from both sides of the story. Just not sure how well she has read the negative side. I know who would cope better with anything negative in her life and that would be my sister.

        Will look forward to some views on the 28% article my sister sent me. Need some help with it.

      • Alice (Australia) says:

        Michelle, I think you adopted a good approach: not to discuss this emotional matter with your sister to avoid damaging your relationship. Your sister is entitled to her choice to trust the system, just as you are entitled to your anger and the loss of trust.

        Though, it is important that you know that your reaction is not wrong or exaggerated: you became a victim of an unnecessary, avoidable psychological and physical damage inflicted by the medical system, and your body and mind are now trying to protect themselves by generating this emotional response to ensure you won’t allow this damage to happen again. Your reaction is logical, understandable, healthy and reasonable. Your acquired mistrust for the system may save your health in the future more than any screening can do, because the chance to be damaged (or even killed) by a medical error, negligence, lack of knowledge, overtreatment or misdiagnosis is much greater than a chance of dying from cancer.

        It is very easy to hand one’s health and body to the doctors and let the system decide everything for you. While it takes time, mental effort, determination and courage to say “no”, to ask questions, to do your research… That’s why the majority of the population prefer the bliss of ignorance, by choice or by chance. Your recent bad experience let you see a glimpse of light, so you can no longer believe that the world is dark.

        My best wishes of strength and health to you!
        Each of us has more abilities and more power than the system wants us to believe. 🙂

  9. Elizabeth (Aust) says:

    Hi Michelle
    The screening programs cling to those early studies that put breast screening in a favourable light, screening reduces breast cancer deaths by 25% or more. They dismiss or find fault with every other study that is not so complimentary. (and the mound gets higher every year) Note these programs have never needed to justify screening, very few have ever pointed a public finger at them so the odd negative comment can be scoffed at, “we’re busy saving lives, the evidence is clear”…

    These early studies have been discredited (long ago) by the Nordic Cochrane Institute, Professor Michael Baum and others. The findings were heavily influenced by bias. (and flawed research models) I’m sure your sister has heard of the NCI, an independent, not for profit, highly regarded medical research group.
    If you head over to References and Education you’ll find a lecture given by Peter Gotzsche from the NCI at the Evidence Live Conference in Oxford 2013, I was lucky enough to be sitting in the audience. Yes, I travelled from Australia to Oxford, that’s how I feel about this subject, how serious I consider the situation we face here in Australia. (at least the UK and the States have quite a few strong and loud advocates for informed consent in women’s cancer screening)

    You’ll notice Breast Screen and the pro-screening lobby find fault with anything that threatens the program and might put women “off” screening. They’ll attack a study that’s reviewed evidence over decades involving more than 90,000 women, “they were using old mammogram machines” etc. but they rely on studies that are even older! It’s clear to me they’re protecting screening, not us.
    http://www.latimes.com/science/sciencenow/la-sci-sn-mammograms-breast-cancer-acr-gilbert-welch-20140219-story.html (the Canadian study)

    Your sister sounds a lot like my younger sister, she had her eyes opened though, after an excess cone biopsy. When she recently turned 50 she knew not to rely on the “information” coming from Breast Screen or to simply accept her GPs advice, “50, time for a mammogram”.
    She’s a highly intelligent woman, but didn’t question her GP all those years ago when she was told that all women must have regular pap tests.

    I don’t tell women what to do, but women should be given a complete and balanced summary of all of the risks and benefits with these tests, and they should never be promoted as mandatory. Of course, hugely expensive programs have to justify their existence, that means reaching targets and making it at least “look” like it’s all working.
    If we were honest about screening, they know more women would decline to test and that means these programs are threatened, the millions they generate for vested interests, those who work in the field etc. These programs turn into an industry, and become resistant to change.

    Would the Govt introduce something that is not in our best interests?
    I think we should keep politics/politicians out of screening/healthcare as far as possible, otherwise we can lose sight of the evidence. Will this program win us votes? That’s not the right approach.
    (like the idea to extend breast screening to include those up to age 74) Also, high emotion accompanied the push for women’s cancer screening (often including those with a vested interest in screening) – the loudest voice should not get the funding.

    IMO, the research appeared to suggest a benefit, women’s groups and others lobbied, political brownie points to be had, vested interests see an opportunity, it’s a concerning mix of influences.
    I firmly believe that vested interests exert their influence over and protect these programs, and they often advise the govt or may even be part of the govt. Radiologists, pathologists, specialists, day procedure and others stand to lose a lot of money if these programs are wound back or dismantled.
    Women’s health screening is worth billions in the States, hundreds of millions in most developed countries.
    This is why screening programs should never be introduced prematurely, an independent group should do randomized controlled trials, and if it passes all of the requirements for a population screening test, the program must behave ethically and respect informed consent. (our legal right)

    The AMA has been silent about these programs, in fact, IMO, they promote and protect these programs. One of their spokesmen even made the outrageous comment last year, “I doubt many doctors would prescribe the Pill without a current pap test on file”…no one said a word. (Pap testing has nothing to do with the Pill, this is a tactic used to force women into screening, avoiding informed consent and often, consent itself)
    Yet if he said the same thing with one change, no Viagra without bowel screening, he’d be challenged in a heartbeat.
    In women’s screening there are few with clean hands, that’s why I’ve always believed the only way to force change is to reach individual women. Breast Screen missed their target again; as more women leave the program or refuse to join, they may try more desperate measures, but eventually, hopefully, they’ll be forced to wind back or close the program. These programs must have numbers, that’s us, if we say NO in sufficient numbers, end of story.

    You should also, listen to Professor Michael Baum’s lecture on You Tube, “Breast Screening: the Inconvenient truth”.
    You’re right too, using absolute or relative risk is another factor, you can make a tiny reduction sound very impressive. You reduce your risk of cc by 90% if you have pap tests etc. but no one mentions the lifetime risk of cc is 0.65% and no one certainly mentions that 1000 women need to screen regularly for 35 years to save one woman from cc. (Angela Raffle’s research)
    The evidence has moved on: now we know the only women who can benefit from a 5 yearly pap test are the roughly 5% aged 30 to 60 who test HPV+ (the new Dutch program)

    Screening will always be presented in a way that “sounds” impressive, but look closely…not so good. It really annoys me, the lengths they go to, to mislead women, to manipulate the evidence, and with no one challenging them, myth and propaganda has become the evidence.

    It may take some time to become less emotional, but then spreading the word online can be great therapy, I’d recommend it to you.

  10. Michelle Ortlipp says:

    Thanks Elizabeth, I found the lecture by Prof Baum before I went for the assessment mammogram and so wished I had seen it before ever starting screening. I will now check out the other resources you have suggested. I have shared the Prof Baum lecture with my younger sister and I have given my mother some things to read. She is 78 and is having a ultrasound for breast pain but no mammogram. I will keep reading.
    Michelle

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