Losing the last 13%

When diagnosed with a BRCA2 mutation, you are told there’s an 87% chance that you will develop breast cancer over your lifetime.  So you bide time while you figure out what to do.  When you are BRCA2+ and diagnosed with DCIS, you officially lose that 13% – the small bit of hope you might have been holding onto thinking you would get to be in the lucky minority.  You no longer have time to bide.  Instead, it’s time to act.

So I’ve been a bit frustrated by the many articles lately that have talked about changing the name of DCIS (removing the word “carcinoma” to eliminate the association with cancer).  The rationale is that too many women have needless mastectomies when receiving this diagnosis, and that there’s little research that shows that DCIS will become cancer.

My frustration is with the articles that do not mention BRCA mutations.  By not mentioning BRCA mutations, these articles (often written by doctors) lead women (even those with BRCA mutations) to believe that they’re making a cavalier and “hysterical” decision to have a mastectomy.  And, by changing the name, women with BRCA mutations who don’t have access to good healthcare professionals and genetic counselors, could be under the impression that DCIS doesn’t mean anything more to them than it does to the general population.

Below is a link to a storify of my conversation with a blogger from Breast Cancer Action.  I’m really impressed that they cared enough to respond to my tweet and to clarify their position.

[View the story “DCIS name-change debate” on Storify]

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