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New Breast Cancer Gene Research Study

May 29, 2012

Earlier this month I received a letter from Hoag Hospital informing me that a research test for a new breast cancer gene has just been made available.  This news is both exciting and terrifying at the same time.  You see, the breast cancer genes – BRCA1 and BRCA2 – only account for 65% of the women diagnosed.  The day after my own diagnosis, my surgeon told me that I most likely either 1) had one or both BRCA genes or 2) was HER-2 positive.  This hypothesis was based solely on my age at the time – 33.

Well, I was neither BRCA positive or HER-2 positive and as a result I am part of the 35% of women of whom doctors have NO IDEA why we developed breast cancer.  It could have been caused by toxins, the environment, BPA, Parabens, other genetic factors, or maybe even this new breast cancer gene.


Test results are expected to take anywhere from 6-12 months where I think my original BRCA testing took 2-3 weeks.  I’m not freaking out about the test at all because it can only reveal answers, right?  If I don’t have it then I don’t have it and I remain in the 35%.  If I do have the mutation then that opens a hereditary can or worms.  Where did it come from and who else might have inherited it? Considering the test is so new, I’m sure that also means answers are scarce.  It will be a waiting game, regardless.

Today I’ll meet with the genetic counselors at Hoag Hospital to discuss what’s involved.  My only immediate concern is the letter states that if you “have been diagnosed with ductal carcinoma in situ (DCIS) and not invasive breast cancer…you are not eligible for this study.”  I was diagnosed with both.  So, I’m not quite sure where that leaves me.

I’ll definitely update you on what I learn today.  I certainly can’t find ANYTHING on the internet about a newly discovered gene.  Yes, lots of proteins and science jargon that I don’t fully understand but nothing about a ground breaking breast cancer discovery.  I asked a doctor in the #BCSM community and she says she has heard rumblings of a BRCA3 gene mutation but nothing else.

What do my fellow survivors know about this test?  Have any of you been contacted?