What’s a previvor? Cancer advocacy group that coined term objects to how I used it at TEDMED

When I posted my TEDMED talk last week, one of the terms I highlighted from it was “previvor.”  Here is how I described that term in my talk:

Previvor is what a particular cancer advocacy group would like everyone who just has a risk factor but hasn’t actually had that cancer to call themselves.

Yesterday, I received a letter from Facing Our Risk of Cancer Empowered (FORCE), the advocacy group that coined the term, expressing concerns about how I had used it. (I’ve made the whole letter available here.) FORCE wrote that they intend previvor to describe people with “a very high risk for a deadly disease like cancer.” And in a different version of the letter that they posted online, executive director Sue Friedman wrote:

I feel compelled to correct what I believe is a misunderstanding on your part about the term “previvor,” and the intent of the advocacy group FORCE in coining and using the term.

She also wrote:

We coined the term to refer to individuals who are genetically predisposed to cancer but have not been diagnosed.

I’m very happy to engage in this dialogue, because based on what they write in their letter, I think that FORCE and I actually agree far more than we disagree. Where we disagree, it turns out, is on whether FORCE’s own definition of previvor is consistent with their intent. Here’s that definition:

“Cancer previvors” are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The cancer previvor term evolved from a challenge on the FORCE main message board by Jordan, a website regular, who posted, “I need a label!” As a result, the term cancer previvor was chosen to identify those living with risk. The term specifically applies to the portion of our community which has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.

The medical community uses the term “unaffected carrier” to describe those who have not had cancer but have a BRCA or other cancer-predisposing mutation. The term applies from a medical perspective, but doesn’t capture the experience of those who face an increased risk for cancer and the need to make medical management decisions. Although cancer previvors face some of the same fears as cancer survivors, undergoing similar tests and confronting similar medical management issues, they face a unique set of emotional, medical, and privacy concerns.

If a group of people with a mutation that puts them at high risk for cancer finds it useful to label themselves in some way, I have no issue with that. The problem is that there are hardly any people alive who do not have “some other predisposing factor” for cancer, which makes FORCE’s definition far too broad to be useful. That was my point.

I am deeply moved by the difficult choices that women with BRCA1 and BRCA2 mutations are forced to make. In fact, those difficult choices are some of the reasons why I remain concerned about “pre-diseases.” Many of those definitions are so broad as to put us all into a state of extreme worried well, at far greater risk of overtreatment than of anything else, as I noted in my talk. Labeling everyone “with some other predisposing risk factor” a “previvor” only contributes to that confusion, and makes those choices more difficult. I submit that it is not consistent with FORCE’s admirable goals of helping people make better health care choices — goals we should all be working toward.

Perhaps FORCE will consider my feedback, and rewrite their definition — which I would welcome.

I’ll conclude this post the same way I ended last week’s:

I look forward to more conversation, and feedback.