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Aug 1, 2017 07:35PM
Aug 1, 2017 07:42PM
Oh, I am right with you on this! I posted under "triple negative" forum and won't go into the details. I always thought I would get uterine cancer because my mom died at 52 of it after years of suffering. Also, because I had my own problems in that area, and I take after her in other medical areas. However, I hit the lotto and got my breast genes from my dad's side.. (9th occurence among 6 people). I initially was diagnosed with atypical ductal hyperplasia early this year at a regional cancer center. (We live in a fairly large city, you'd think that would be fine). Also my needle biopsy disagreed with my lumpectomy biopsy so I got a second opinion from a well known hospital 5 hours away, where some of my family were treated (we don't have BRCA genes). When I say well-known, I mean a "movie star" famous facility. That facility not only found DCIS, they found invasive IDC. It was super small, very early stage, but high grade (fast growing). They are recommending double mx and the local docs here disagree. The subsequent MRI/Bone Scan and CT scan show various problems but do not agree with each other. It feels like no one is on the same page, including the pathology labs and the radiologists! (I'm guessing it is because it is so small,so early). If I hadn't already made a decision, I might even get a third opinion.
However, because the chance of recurrence seems so high in my family, I am going to do the double mx surgery and reconstruction (assuming my insurance approves... apparently they also disagree that double mx is needed... probably because the hospital and reconstruction surgeon are in a different state and are movie-star related). Luckily I do have good insurance and it will probably be resolved. If you are in doubt at all, get a second opinion out of town. Then there is no croney-ism, no reason for the doctors to agree if, in fact, they disagree. It certainly seems like you could find some hospital/doctor that is in your plan. I will do the main surgery and reconstructive surgery at the "famous" hospital, but will have the "fills" done locally. And if chemo is determined to be necessary, I will have that done locally.
I am 62. There are lots of cancers in both sides of family but of all different kinds. I knew cancer would be my downfall, just didn't expect breast cancer to come to me through my father's genes (he is 90 and doesn't have it). None of us is BRCA +. I am the only one found to be triple negative.
Good luck to us!
PS: Colon cancer, prostate cancer, ovarian cancer and breast cancer are supposedly related. We have several prostate cancers, 1 colon cancer, one brain cancer, one lung cancer, one pancreatic cancer, and 9 occurences of breast cancer. AND even though I did the extended genetic panel test, I have no genetically known markers.