the brca BART saga, continued

So, I contacted Myriad to actually get the criteria for the BART, and this time was told that I would need two relatives with breast cancer under age 50 or ovarian cancer at any age.  My response: Check!  Got those.My aunt had breast cancer at 38 and my great aunt had ovarian cancer.  The other requirements were that they be on the same side of the family – check.  And at least one of them has to be a first or second degree relative – again, check.

However, Myriad had no info. in my file about the ovarian cancer, which is why they didn’t perform the BART automatically as part of the BRCA test in 2007.

This despite the fact that my great aunt’s ovarian cancer was in my genetic pedigree chart in 2004.  Sigh…..why that info wasn’t conveyed to Myriad I don’t know.  Or perhaps it was?  Have to hear all sides of the story first.

So here we go again, another round of questions and chasing down a corrected paper trail.  Who knows, maybe I’ll get free BART testing out of it, as it should have been done in 2007 as part of the BRCA test.

Am thinking of making a list of all the cancers as clearly the pedigree chart is either hard to read or it just doesn’t get read.  I can read it, but then I know the story.  But either way, it’s complicated, and a cheat sheet will hopefully result in fewer mistakes, as I have to give the history over and over again with every new scan, mammogram etc.

Sometimes I wish my self-advocacy gene 🙂 didn’t kick into such full gear, with such a steel trap for critical details.  It causes me headaches.  Borrowing trouble, except that I can’t stand to have my head in the sand.  Scratchy.

The implication of all this, just so you all know the bottom line:  if for some remote reason the BART test does return BRCA positive, that increases the risks of breast/ovarian cancer by something like 60%.  Yikes.  So some choose double mastectomy, hysterectomy and oopherectomy as soon as they know and can do it.

Deep breaths – I’m going to assume that this will all turn out well.  Cross that bridge when it comes.  In the meantime, fight for the right to have bridges.

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