DCIS, overtreatment and professionalism

There’s an article in the Guardian describing the US treatment of a woman who had DCIS diagnosed at screening, in one breast.

She went on to have bilateral mastectomy, with flap reconstruction, an autologous blood transfusion, and a stay in ITU. The author writes

” It is so confusing. What was that all about? Cancer? Really? But it was so tiny. Why was the operation so huge? Why has my body been what my plastic surgeon likes to call “completely remodeled”, at a cost of $250,000 to my insurance company, just because of what my radiologist described as “a handful of atypical cells”?”

and

“My goal all along has been to put this experience behind me as fast as possible before carrying on with life as normal. The cost is insane, the trauma has been considerable. I wish both had been less. But given my options, I am comfortable with my choice.I wish there had been another option, though. I wish there was a way of eliminating these cells without taking out so much of my body. I wonder how long it’ll be till that option exists?”

These are good questions, but are not addressed in the article. There’s a massive problem in terms of what ‘normal’ is (the article is entitled “My 40 day breast cancer” and I think we can be safe to assume that the DCIS was not present for only 40 days.) Most of us will have something not ‘normal’ if we are put into a scanner – the very real problem medicine now faces is working out which is likely to be damaging and which should be ignored.

What do we know about DCIS? We know that ever since we started screening for it, rates of diagnosis have increased. We know that many surgeons have been very concerned about overtreatment – there has been a large movement away from mastectomy since trials showed that lumpectomy and radiation therapy was as good for localised DCIS . We should also remember that survival after DCIS is close to 100%. It’s also clear that the oncology community are concerned as to whether DCIS really is cancer or a possible pre cancer. In other words: lots and lots and lots of doubts.

Is the best response to remove both breasts – both the affected breast and the unaffected one? I’d be surprised if this would be offered on the NHS. It begs the question about how far we should go with trying to prevent disease using surgery – should we remove our ovaries and wombs too, ‘just in case’, even when the organs are healthy and we are at normal genetic risk of developing disease?

There’s an problem in that doctors may be asked to perform procedures which are unnecessary, but where a ‘customer’s’ rights holds trump. This may be fine as long as there are no wound infections, post operative deaths, or mental health sequelae. But of course there are, and the history of medicine doing harm is long and humbling. The other massive threat is to medical professionalism; the need to do what is based on evidence rather than balance sheets. This excellent article from Boston, by Arnold Relman, says it clearly; ” The vast amount of money in the US medical care system and the manifold opportunities for physicians to earn high incomes have made it almost impossible for many to function as true fiduciaries for patients.”

As the NHS begins to be fractured, and people are encouraged to shop around for what they consider best, I’m concerned that the guidance from NICE is going to be usurped by offers of overtreatment. It’s easy to think that more treatment must be better and to blame NICE for rationing, rather than deliverers of the evidence. For who are patients to believe? The bottom line is that patients should be able to believe professional doctors. But, as Relman asks, do  doctors whose bottom line is an accountancy balance sheet merit that trust?

8 Responses to “DCIS, overtreatment and professionalism”

  1. Elizabeth (Aust) April 29, 2012 at 7:04 am #

    The American system terrifies me. Years ago I wondered why my American colleagues all headed for the doctor when they landed in Hong Kong. I was horrified when I found out what they had to endure simply to get the Pill…and they were actually refused the Pill if they declined to climb into stirrups for unnecessary and potentially harmful exams and serious over-screening with the pap test. (supposedly an elective cancer screening test)
    This was also the case here up until around 15 or so years ago (minus the stirrups)..I find it amazing that things have not progressed in the States. I consider the greatest threat to American women to be their medical system.

    The forums are full of young women having multiple procedures on the poor cervix….any tiny thing jumped on, lasered or excised….lots of women have hysterectomies for all sorts of fanciful things including, “persistent dysplasia”…1 in 3 women will have a hysterectomy by age 60. So much for great healthcare. The well-girl and well-woman exams are IMO, harmful and completely unnecessary in symptom-free girls and women.
    Virgins are even pap tested and “treated” and breast biopsies are very common when you’re having your breasts examined every year from girlhood, a lot of women have baseline mammograms at 35 or so, just terrifying.
    You see posts from mothers doing the “right” thing by their daughters and taking them along for their first pelvic exam and numerous websites dedicated to your first gyn visit. Many forums are full of young women terrified of these exams or traumatized by them, “I hate being a woman”…it’s so cruel. The entire country seems geared to getting women into stirrups every year of their lives.

    Many American women now need constant reassurance that all is well…otherwise they’d be worried sick abnormal cells may be developing… When I told one shocked American woman online that I’d never had a routine breast or pelvic exam and had declined cervical and breast cancer screening, she asked, “but how do you know you’re well?”
    Isn’t it sad so many women need to be TOLD they’re well every year by their doctor? Strangely, the wellness concern seems to be confined to the breasts and reproductive organs, forget the rest of the body. So many women no longer trust their own bodies, they can’t recognize wellness unless a doctor gives them a tick every year. “It gives me peace of mind to know I’m okay, all my exams and tests are clean”…Women have been conditioned not to trust their own bodies.
    My grandparents would never have seen a doctor unless they were symptomatic….there was a clear distinction between well and unwell, now we’re increasingly unwell until a doctor tells us otherwise and of course, there are so many shades of unwell, few get a clean bill of health.
    I think happiness is often overlooked here, the reduced quality of life spending your life in stirrups, dealing with “abnormal” findings and having “treatments”…IMO, it’s no life at all.

  2. Elizabeth (Aust) April 29, 2012 at 8:17 am #

    Also, the account in the Guardian is shocking and one of the reasons I’ve declined breast screening. I doubt this would have happened in Australia though…a family friend with a small DCIS had a lumpectomy and radiation – it still made her very sick and it was an ordeal, not great for your mental health, but nothing like this….full body re-modelling!
    Makes me think a lot of the American response is about profits and extreme defensive medicine.
    Scary stuff…

  3. Mitzi Blennerhassett April 29, 2012 at 11:11 am #

    The Guardian article is shocking indeed. Also shocking to me is that women being invited to NHS screening as part of the extended age programme (ages 47-49 and 71-73) are not being told explicitly that, by accepting, they are being recruited into a randomised controlled trial (RCT) – ‘the largest in the world’ – according to Mike Richards, Cancer Czar writing in the bmj 25 October 2011. This is despite much robust research which has shown the significant harms of breast screening (over-diagnosis, over-treatment etc) can outweigh benefits and despite that concern is great enough for an Independent Review of the NHS Breast Screening Programme to be under way.
    When I sat on an ethics committee, such research proposals had to state, ‘You are being invited to participate in a randomised controlled trial’ and the information had to describe clearly any potential risks or they would not be passed.
    I have written to the ethics committee who passed this research but they have not replied and the response from the Health Secretary was not at all helpful.
    How can this situation be ethical? A procedure which causes so much harm that it is under review is being used as an RCT and women are not being explicitly told? Most women with screen detected cancer would still have survived or will still die because of their particular type of cancer. Screening will have made no difference. And up to a third will be treated unnecessarily – the ‘changes’ found are normal and would never have caused a problem.
    We have been brain-washed into thinking ‘screening finds cancer early and will save your life’ – but modern understanding of this collection of diseases and the way they progress has changed that view.
    Women attend screening out of fear and need for reassurance. Yet that reassurance is false – the slow growing cancers can be found without screening and the women would be ‘cancer patients’ for a shorter time. The faster growing cancers are likely to pop up between screenings and still go on to take a life. But the best chance of becoming a cancer patient is to attend screening – which is likely to find something that will be treated, even though it may never have caused a problem.

    It is the scale of the harm that is so shocking. And the fact that women have not been told about this. And all this is apart from the side effects of treatment, which include a lifelong risk of lymphoedema and all that entails.

    Despite the downsides to screening and the independent review, time after time, medical interviews and articles end with women being urged to continue to attend for screening. Are the interviewers and writers simply fearful of upsetting the establishment – or of being sued? It’s as if they have not read the research and have deaf ears.

    At least in the UK the NHS screening information is being re-written. Let us hope it gives (healthy!) people the facts and opens peoples’ eyes so they can really make informed choices.
    Meanwhile, speaking out about screening harm is often greeted with disbelief (despite the evidence and the review) and likely to cause a backlash of ‘shoot the messenger’ fury. It cannot be easy to accept that one may have been turned into a cancer patient and treated unnecessarily.

  4. Chris Hiley April 29, 2012 at 5:27 pm #

    Hello M and friends. Kindly, I’m not going to bore you, or your readers with a further rehash of my usual noodlings about the mess that is breast screening and the lack of information on risks, as well as clarity and accuracy on the supposed benefits. This Amercain woman’s story says it all, about how the risks of screening play out. As you know I am currently a screening refusenik. I suspect that’s how I’ll remain, but I will await the Review of breast screening and see how we go. Hopefully, however that turns out, I’ll still be powered by rational thought about screening, rather than disproportionate fear of death from breast cancer.

    I’ve just re-edited an old post on my own blog from October last year when the Review of breast screening was announced. I suddently realised the breast cancer charities are at great risk of landing up in a very strange place indeed, should the Review suggest ANY level of change in the current programme.

    I am hoping for some (total?) clarity and quantification of the risks of screening. The charities, who have been so much in favour of it, Breakthrough Breast Cancer for one, will have to explain why, up ’til now, they have failed to engage in any meaningful way in bringing up risk, as an aspect of charity breast awareness raising (and informed decision making/consent) amongst women. As concern about ‘harm’ has been around for years – but not amongst the general public – the strange place in which charities may soon find themselves will be explaining THEIR contribution to harming women, through screening.

    Breast cancer charities harming women? Well, yes actually.

    We need to hear from them why they chose not to engage the general public of undiagnosed women in the otherwise exclusively professional debate on the risks of breast screening. They have, largely, stuck instead to using the popular press and media to herd women towards screening.

  5. Elizabeth (Aust) April 29, 2012 at 11:47 pm #

    Chris, they usually say things were unclear and they didn’t want to “confuse” or “concern” women. Breast Screen said they didn’t mention over-diagnosis because they had no idea what to say, there was no consensus…does over-diagnosis occur in 1% or 30% of cases, the estimates vary.
    Of course, this is outrageous, if there is a serious risk, you mention it!
    The other trick is to say there is “new” evidence or we can now safely change the guidelines…which has happened in the States with the sliding back from extreme over-screening with the pap test. We occasionally hear those mumblings here too, but they clearly don’t want to make any changes, which should exclude those under 25 from testing, until they’ve finished their research into Gardasil. A couple of doctors have actually come out and said that…
    So, when Mitzi talks about ethics, I wonder too, why is screening permitted to do as it pleases with no critical scrutiny? When it has been known for years that screening does not benefit those under 30 and early treatments can harm, how can it be ethical to conceal this information from young women, continue to urge them to screen…while you use them for research purposes? No informed consent for screening or this research…
    Of course, when they’re ready they’ll tell women it’s now “safe” to change our program. All of this is only possible though with the co-operation and silence of our doctors.

  6. Mitzi Blennerhassett May 1, 2012 at 3:08 pm #

    ‘Breast Cancer Charities harming women?’ My experience at a certain national charity’s Westminster Fly-In a couple of years ago left me incredulous. Hell bent on pushing their campaigners to meet individually with their MPs to lobby for extending the breast screening age at both ends, they not only did not mention to participants the research findings that showed over-diagnosis and over-treatment, but would not allow me to submit a written question on the subject to the Cancer Czar, Mike Richards, who was visiting for question time. I wrote a response in a medical journal about ‘pink fluffy blinkers’. It was ‘The Emperor’s New Clothes’ in reverse; an attitude of ‘if we don’t acknowledge it, it won’t be happening’. Other participants I spoke to there had no idea about the harms. I told them to ‘watch this space’. I resigned from the charity’s advocacy team but was shocked (after so many years service) when an official wrote they had decided that they ‘would, however, reimburse my expenses’. – ‘However’? – so they had considered not reimbursing me? They have since refused to meet and discuss the issues with eminent surgeons, researchers etc. As for TV presenters and journalists, if they have no scientific credibility they should end their programmes and articles not by advising women to continue to get screened, but suggesting they call for honest and open information so that they have genuine choice.

  7. Elizabeth (Aust) May 2, 2012 at 5:00 am #

    I think it’s very worrying when big business, high emotion (often irrational or based on myth or misunderstanding) gets mixed up with healthcare. It’s the silence that concerns me the most, I know many GPs are not up with their research and just follow the screening guidelines – then we have misleading brochures and no one corrects Breast Screen and Papscreen who are only concerned about reaching a screening target. Then we have the cancer charities and vested and political interests. The Cancer Council (Vic) have on their website a patronizing article written by a young woman…she’s shocked women “don’t just have pap tests every 2 years” like she does…a very sheep-like comment, but I don’t blame her – everything says that’s what we should be doing, this is the way they speak to women…but no one corrects these statements AND it’s an insult to our intelligence to produce this sort of rubbish rather than provide real information, but the latter may put women “off” testing and threaten the screening target. We shouldn’t have screening targets, give women all of the information and if you can’t get the numbers, then you have to consider whether a program is a good idea – or whether it should be scaled back…
    That’s a lot working against informed consent.

    I was pleased to see a 2% drop in cervical screening, down to 57%, hopefully more Australian women are working out 26+ pap tests are unnecessary and greatly increase the risks for no additional benefit and more young women are refusing to test, a positive step. I guess we’ll see another scare campaign soon…with the headlines, “More women putting their lives at risk” and “Women avoiding life-saving test”…”Young women are risking a preventable death”.
    It’s so depressing…how did we get to this point? When dishonesty and spin are an integral part of cervical and breast cancer screening and the system can rely on silence from all those who know these statements are unfair or untrue.

  8. Derek Tunnicliffe May 2, 2012 at 6:22 pm #

    The sum of these comments leads me to remember what some one explained to me recently:
    health care should be ruled by the 4P’s – it should be
    Preventative
    Predictive
    Personalised
    Participative.

    Screening should be about all four of these actions, I suggest. I leave it to you, readers, to judge where each of the tales told here fail.

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