• Peggy Orenstein and the war on breast cancer

    Go over to the NYT, right now, and read this. Peggy Orenstein has written what may be the best piece on our “war” on breast cancer to date. I could quote the whole thing. But here’s something that truly resonated:

    My first instinct this round was to have my other breast removed as well — I never wanted to go through this again. My oncologist argued against it. The tamoxifen would lower my risk of future disease to that of an average woman, he said. Would an average woman cut off her breasts? I could have preventive surgery if I wanted to, he added, but it would be a psychological decision, not a medical one.

    I weighed the options as my hospital date approached. Average risk, after all, is not zero. Could I live with that? Part of me still wanted to extinguish all threat. I have a 9-year-old daughter; I would do anything — I need to do everything — to keep from dying. Yet, if death was the issue, the greatest danger wasn’t my other breast. It is that, despite treatment and a good prognosis, the cancer I’ve already had has metastasized. Preventive mastectomy wouldn’t change that; nor would it entirely eliminate the possibility of new disease, because there’s always some tissue left behind.

    What did doing “everything” mean, anyway? There are days when I skip sunscreen. I don’t exercise as much as I should. I haven’t given up aged Gouda despite my latest cholesterol count; I don’t get enough calcium. And, oh, yeah, my house is six blocks from a fault line. Is living with a certain amount of breast-cancer risk really so different? I decided to take my doctor’s advice, to do only what had to be done.

    I’ve discussed risk so many times here. I’ve encouraged us to have a better discussion of harms versus benefits. I’m not sure anyone could do it better than she did there.

    Here’s another bit that focuses on the counterfactual:

    It wasn’t so long ago that women fought to keep their breasts after a cancer diagnosis, lobbying surgeons to forgo radical mastectomies for equally effective lumpectomies with radiation. Why had that flipped? I pondered the question as I browsed through the “Stories of Hope” on the American Cancer Society’s Web site. I came across an appealing woman in a pink T-shirt, smiling as she held out a white-frosted cupcake bedecked with a pink candle. In a first-person narrative, she said that she began screening in her mid-30s because she had fibrocystic breast disease. At 41, she was given a diagnosis of D.C.I.S., which was treated with lumpectomy and radiation. “I felt lucky to have caught it early,” she said, though she added that she was emotionally devastated by the experience. She continued screenings and went on to have multiple operations to remove benign cysts. By the time she learned she had breast cancer again, she was looking at a fifth operation on her breasts. So she opted to have both of them removed, a decision she said she believed to be both logical and proactive.

    I found myself thinking of an alternative way to describe what happened. Fibrocystic breast disease does not predict cancer, though distinguishing between benign and malignant tumors can be difficult, increasing the potential for unnecessary biopsies. Starting screening in her 30s exposed this woman to years of excess medical radiation — one of the few known causes of breast cancer. Her D.C.I.S., a condition detected almost exclusively through mammography, quite likely never would become life-threatening, yet it transformed her into a cancer survivor, subjecting her to surgery and weeks of even more radiation. By the time of her second diagnosis, she was so distraught that she amputated both of her breasts to restore a sense of control.

    Should this woman be hailed as a survivor or held up as a cautionary tale? Was she empowered by awareness or victimized by it? The fear of cancer is legitimate: how we manage that fear, I realized — our responses to it, our emotions around it — can be manipulated, packaged, marketed and sold, sometimes by the very forces that claim to support us. That can color everything from our perceptions of screening to our understanding of personal risk to our choices in treatment. “You could attribute the rise in mastectomies to a better understanding of genetics or better reconstruction techniques,” Tuttle said, “but those are available in Europe, and you don’t see that mastectomy craze there. There is so much ‘awareness’ about breast cancer in the U.S. I’ve called it breast-cancer overawareness. It’s everywhere. There are pink garbage trucks. Women are petrified.”

    Even people who had cancer detected by early screening may have been better off with a less aggressive approach. We don’t know what would have happened in an alternate timeline.

    Seriously, stop reading me and go over there and read the whole thing. If TIE had an award to give, I’d send it over to Peggy Orenstein right now.

    @aaronecarroll

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    • My wife and I both found the article thought provoking and valuable. We independently came to the conclusion that supporting “Race for the Cure” was no longer on our priority list.

    • The real problem here is the total lack of good science on either side of the argument. The positions that Orenstein stakes out are not supported by scientifically satisfactory studies any more than the positions adopted by the Race for the Cure. The studies from the late 70’s and early 80’s that underlie most breast cancer management and screening are ALL very poor quality with unsatisfactory statistical strength and randomization. Assertions regarding the benign prognosis of young patients with DCIS or early stage cancers are not supported by science, nor are the assertions of the other side that aggressive therapy is required.

      The problem is the difficulty in getting statistically significant numbers of women to join — and stay in — randomized studies to test almost any aspect of breast cancer management. Without that, the people staking out one position or the other are depending on garbage science, but with both sides — including Orenstein — vehemently insisting that they are on the side of the angels.

      This is in contrast with the much better science that supports the current criticism prostate cancer therapy.

      The most accurate assessment of the situation in breast cancer was the statement that the Nordic Cochrane Group made in the introduction of their discussion of breast screening and treatment: it is scientifically logical to seek screening and more aggressive management, but also scientifically logical to avoid screening and treatment. The issue is simply not resolved. In this setting, it probably makes cold hard sense to err on the side of being less aggressive, but at the same time many patients are unwilling to endure the risks and uncertainty — partly because of the deluge of propaganda that has surrounded breast cancer since the early 80’s.

      It is unfortunate that the science has left us with a coin flip on such an important issue, with little likelihood of getting better evidence.

    • What about other imaging techniques? What does a mammogram find that an ultrasound doesn’t? Maybe we need to do ultrasounds more often and mammograms less often?

      • Ultrasound is useful in assessing abnormalities detected by physical exam or by mammogram, but not useful in screening. It has higher levels of false positives and lower levels of true positives, potentially leading to more surgery for benign conditions and more misses of cancers.

        As long as I am at it, MRI is also less useful than mammography, with very high rates of false positives, especially in younger women.

        Both MRI and ultrasound are more expensive than mammography — much more expensive for MRI. The radiation doses in mammography are very low — in a range at which there has never been any proven ill effect.

        The center of this problem is not whether the imaging studies work technically or whether the treatment options work — they do. The question is whether our traditional model for breast cancer is right. Are there classes of breast cancers in younger (under 70, under 60, under 50) that usually will not go on to become lethal cancers? If that is true, we need to find ways to distinguish between lethal and non-lethal cancers and develop approaches that treat the lethal and ignore the non-lethal.

        In order to reach that position and act on it, we need to do a lot more research, especially randomized controlled studies and especially large randomized controlled studies. Getting that done would be very hard in the current situation because women will be unlikely to volunteer for randomization in adequate numbers– in the hundreds of thousands for some questions. But until we do that, we just have two sides shouting at each other.

        Orenstein has chosen to come down on one side, a side whose position will surprise many educated Americans who have heard only the other side. However, it is important to realize that the positions she stakes out are not settled science at all, but in the context of existing information are speculative, as are the positions of her opponents.

        We need better science.

    • In my limited experiences with on-line forums I think that reconstructive surgeons in Europe do not necessarily offer all the possibilities that America surgeons do. If one is interested in reconstruction having both sides done does result in more symmetry, plus it eliminates future worry from the picture.

      Despite billions of dollars in research, if breast cancer returns or spreads beyond the breast ones life is permanently filled with medical treatments and shortened.

      I don’t view it as a backpedaling against breast-conserving trends, rather an expression of the American desire for choice in treatments. It is easy enough to talk about small risks when viewing the situation from the 33,000 feet of population level. When the small risk has popped up in your body it does not seem so small.

    • Orenstein’s article is wide ranging and raises many questions.
      But we’d also like to add that you can’t manage what you don’t measure. When will we start collecting meaningful statistics on metastatic breast cancer recurrence? US cancer registry data captures data at the time of diagnosis and death. The registries don’t track what happens in between.

      As Orenstein notes, 30% of those originally diagnosed with early stage breast cancer will have a metastatic recurrence. But this information is not tracked–until people die. Please read our complete response (so to speak) here:

      http://mbcnbuzz.wordpress.com/2013/04/27/our-feel-good-war-on-breast-cancer-mbcn-responds/

      Katherine O’Brien
      Secretary
      Metastatic Breast Cancer Network (www.mbcn.org