There is a rather heated discussion going on with Dr. Oransky on his blog about how to define the term "previvor" and whether Dr. Oransky appropriately used the term in his TedMed talk in recent weeks. Check out Tuesday's blog below for the full history of this issue.
In the meantime, I thought you might like to see my most recent response to Dr. Oransky. Dr. Oransky's response to me was:
If your reference to the lifetime risk of breast cancer is to demonstrate that all women are at some risk that makes them into a previvor, I must respectfully note that is the kind of lack of clarity in labeling that I was concerned enough about to label “pre-death” in my talk. Similarly, using a term like “previvor” suggests cancer is inevitable, and while it is in fact quite likely for some people, as many have correctly noted on this thread, it varies widely and is quite low for many people. I think it would be much better to determine risk and therefore be able to judge the relationship of risk and benefit for individual people, rather than suggest that cancer is inevitable for all women.And I posted the following response on his blog:
I am afraid you misconstrued my words. I also suspect you did not fully read my blog as I noted that even having a BRCA mutation does not mean that cancer is inevitable, although for many BRCA families it may seem so as generation after generation of women are mowed down by this disease at ever younger ages. I also did not mean that every woman is by definition a previvor, just that being a woman is, in and of itself a risk factor. To assert otherwise is to defy reality. Rather, what I meant is that there are a variety of things that can significantly raise risk, such as treatment for other cancers with radiation, and that those women should not be excluded from the high-risk community by a tightly parsed definition as you suggest. You, by virtue of your hypertension are at increased risk of certain medical complications, including stroke. I suspect that you do what is necessary to reduce that risk by controlling your condition. Women at high risk for breast cancer must, as you do, do a variety of things to reduce their risk and/or to find a cancer at a sufficiently early stage to be curable. Once you begin to look closely at the research, you will discover that there are clinical differences in these cancers that mean a greater percentage of early diagnosed cancers in these women will go on to be fatal, regardless of the treatments current medical technology can offer. Women staring down the barrel of this gun have every right to call themselves whatever they want, including previvor, and it is disrespectful of the women facing these very real risks who must make life altering decisions that are considered "extreme" to many to poke fun at the term previvior and to equate it with your clearly designed to be amusing label of "pre-death." I believe that the point of your talk was to point out where the medical community goes overboard in the treatment of conditions or non-conditions that are unlikely to come to fruition. I continue to believe that your inclusion of the term previvor in your talk and your continued defense of the use of the term in this context is disrespectful of the high-risk breast and ovarian cancer community. One of the biggest challenges faced by FORCE and by our community is that there are still many, many doctors who do not believe in genetic testing and women's lives are lost because the medical establishment fails them on this front. The world for which you advocated in your talk would be one where even fewer doctors looked closely at their patient's medical history because to do so is a waste of time and medical resources. That is a vision of the future of our health care system that is totally at odds with my beliefs and with the mission of FORCE. If you wish to truly focus the discussion of excessive health care spending on matt ers that are indeed excessive, then your continued attack on the the high-risk community really weakens your argument. Respectfully, Joi
This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License. Inquiries regarding rights should be directed to the authors.