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Feb 1, 2020 10:37PM
Hi Dana, I had genetic testing at the time of diagnosis, as it would have changed my surgical plan. Did you decline testing before your lumpectomy? I had a grandmother diagnosed on my non-Jewish (maternal) side at age 40, and I was dx at age 41. (My mom then got pancreatic cancer, also with no genetic mutations, so part of me thinks there's a whole lot they still don't know about genetic risk.) My father was Ashkanazi Jewish. I had no genetic mutations. If I was BRCA positive, my surgeon said they likely would have removed both breasts and my ovaries. Since I wasn't, I removed only one breast (full of both DCIS and IDC, clearly had to go). I have a co-worker who is BRCA positive and had prophylactic ovary removal, but did not remove her breasts (no cancer in either location), just has monitoring with MRI as genetic cancers can hide. I'd keep my breasts if the doctors do not recommend otherwise, my mastectomy area causes me a fair amount of routine woe and little sexual pleasure, and I'm grateful to have one untouched breast. I'd encourage you to have the genetic testing though, your insurance should cover and it might impact treatment and monitoring recommendations for other kinds of cancer beyond breast. BRCA can be implicated in ovarian cancer, pancreatic, etc.
Before my genetic test results came back I was pretty terrified at the idea of losing both breasts and my ovaries, as they seemed so fundamental to what made me a woman. Now, I have lost one breast and we've obliterated my ovaries chemically, and I still feel like just as much of a woman, so I smile a little to see those fears were unfounded. It's a tough situation to be in, but do the best you can with the information you have in hand, and I always felt like it made sense to try to make reversible decisions before jumping into irreversible ones. So with ovarian suppression, I get injections of Lupron rather than having them surgically removed.
Hope this helps! Try not to beat yourself up for feeling confused. It's confusing and there's a lot on the line physically and emotionally.
DX'ed at age 41 on my first mammogram
1/11/2018, IDC, Right, Stage IA, 0/4 nodes, ER+/PR+, HER2- (FISH)
2/6/2018 Mastectomy: Right; Reconstruction (right): DIEP flap
9/2018, IDC, Right, <1cm, ER+/PR+, HER2-
10/4/2018 Lumpectomy: Right
Whole-breast: Breast, Lymph nodes, Chest wall