We Must Be the Watchdogs

The media sucks so often, and they suck the most when they dish out information that is misleading and can potentially kill people. And by media, I am pretty much referring to anyone these days who is writing about breast cancer risk and does not mention the population of those of us with BRCA mutations. These articles often refer to astounding statistics of women having unnecessary procedures like MRIs or mastectomies, and they conclude by saying that most women do not need to do these things. However, by failing to mention a subset of women – BRCA+ women – in their writing, they are misleading anyone who reads their article – anyone who may have a high risk and doesn’t yet know about it, or anyone who does know of their high risk and is choosing to not inform themselves about it appropriately. Anyone writing about breast cancer these days needs to include the BRCA+ population in the information they provide. And if they won’t, then I urge the previvor population to be media watchdogs and call out those who mislead the public.

Here’s an example of what I mean. Last August, Breast Cancer Action published this article, “40 Years Later, Re-Learning That Sometimes Less Is More in Breast Cancer” by Karuna Jaggar, their Executive Director. In it, Jaggar, argues that too many women diagnosed with DCIS are being pressured into having mastectomies when there is no medical proof that this is lifesaving:

It is now well established that a lumpectomy can produce equivalent—and some research suggests possibly even better—outcomes than a mastectomy. Today, we celebrate the success of early patient activists in challenging what is now viewed as excessive treatment. And, from them, we’ve learned the lesson that more treatment does not always produce better outcomes.

I am not disagreeing with Jaggar, however, a decision to have a mastectomy with a DCIS diagnosis is different when you are someone with a BRCA gene mutation. A lumpectomy might be just as effective as a mastectomy for a woman with DCIS – a woman in the “general population.”  But women with a BRCA gene mutation are at a much higher risk of DCIS developing into invasive cancer (and then later to have a recurrence), and those women need to speak to a genetic counselor to determine if a mastectomy might be a better choice than a lumpectomy.

When I read this piece by Jaggar, I was struck that there was no mention of women with BRCA mutations. I tweeted to @BCAction to ask them to clarify this difference. And they did. They added the Editor’s note found at the beginning of the article:

Editor’s Note: The discussion of DCIS below assumes a woman has an average risk of breast cancer. Women who have a BRCA mutation that puts them at a much higher than average risk of breast cancer are in a different category of breast cancer risk, and should talk to their medical provider about how that affects their treatment options and decisions with a diagnosis of DCIS.

I was thrilled and really impressed that Breast Cancer Action agreed to add the Editor’s note and make this clarification.

Here is yet another example. Yesterday I noticed this article linked on Twitter: “Why Are More Women Choosing Mastectomies,” published in the Boston Globe, written by Deborah Kotz, tweeted by @DanaFarber. This article, printed more than a year later, reiterates yet updates similar information as the Breast Cancer Action piece – mastectomies are on the rise, particularly with respect to those diagnosed with DCIS.  And, like the BCAction piece, it fails to distinguish between those in high-risk categories (like BRCA mutations carriers) and those in the general population when it concludes that:

Women need to be told about the full array of benefits and drawbacks of both types of surgeries before determining the choice that works best for them.

Of course, I do not disagree with this statement.  But it is the last statement in a piece that implies that too many women are choosing mastectomy over lumpectomy when a lumpectomy is just as good.  This may be true for the general population of women.  But it is not necessarily true for those with BRCA mutations.  Women with BRCA mutations need to discuss this with genetic counselors.  This sort of information should be in articles like this.  Now that we know that there are women in high-risk categories (we have BRCAnalysis), the media cannot treat “all women” as the same when they write about breast cancer.

I tweeted to the author (@debkotz2) to point out that her article contained misleading information.  So far I’ve heard no response.  But it would help if we all keep our eyes out for articles like this.

Unfortunately, I think a lot of people get their information from news outlets and social media rather than doctors and genetic counselors.  I would hate to know that women with BRCA mutations are being misled by information that is not really about them.  Once diagnosed a BRCA mutant, we are no longer part of the “general population.”  And this is why we need to watch out for each other.

Note: a few hours after I wrote this post, I did receive a tweet back from Deborah Kotz that said, “you’re correct but they did account for rise in #BRCA screening and it only accounted for part of the trend.”  I’m not exactly sure what Kotz’s point was here, but I definitely appreciated her response, and I hope maybe she considers adding some sort of clarification to the original article or considered making a clear distinction between previvors and the “general population” of women in her future reporting.

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