CarrieBelongs's Story

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"I was diagnosed with metastatic breast cancer in August 2011, after a couple failed 'early detection' attempts. My sister was just diagnosed in May 2015 with breast cancer (she was misdiagnosed last year and told by her primary that her lump was because she was fat). This caused us to research our family history which has been largely swept under the rug.

"When I was first diagnosed I did mention to my (former) oncologist that I had a family history, namely, my maternal grandma died of metastatic breast cancer when she was in her 40's. I also knew of a maternal aunt who was treated for breast cancer when she was younger, age unknown but probably in [her] 40's or 50's. This should have prompted genetic testing alone! Well, now we know that a maternal uncle also had breast cancer when he was younger! No one talked about that because 'boys don't have breasts.' I remember the story of Uncle Robert having a nipple removed because he had a tumor under it. Hindsight can be a killer. Duh! He HAD breast cancer. The only siblings out of that bunch who have not (yet) been diagnosed with breast or ovarian cancer are my mom and one other aunt, and an uncle who died from disabilities in his 40's (out of six children total). However, my mom had five children and nursed faithfully which reduced her risk. Then she had female stuff removed after the last child, further reducing her risk. My other aunt had female organs removed in her 40's due to some precancerous condition. That must have reduced her risk considering all of us have had the hormone-driven, BRCA2 mutation cancer.

"After I signed up for genetic testing (finally, four years after diagnosis!), I found out an aunt who died of renal failure had metastatic ovarian cancer. Makes sense now. My sister and I have breast cancer. My maternal grandma had MBC, aunt - ovarian, uncle - breast, aunt - breast. All from one family and all early onset! I'm still processing the emotions of learning this all in hindsight and how I could have reduced my risk given this very strong family history. I did not take care of my health during a very emotionally tumultous time which is when the cancer took off growing. Plus, I was obviously misdiagnosed years before my MBC diagnosis, but I was very ignorant of second opinions and what would happen down the road by just walking away from the doctor angry because he would not listen about my lump and retracted nipple.

"I have yet to get my full genetic testing results, but my sister's has come back with the BRCA2 mutation. It's pretty obvious that also affects me. Early onset (I was in my earlier 30's at the time of actual development, but misdiagnosed twice) and hormonally driven.

"Thank you for listening to my story. This genetic equation to my cancer is so new, and I am struggling to find support for that. Hopefully, I will figure out this website. I keep asking, 'Now what?' and, 'Why...?????'"

-- CarrieBelongs, shares a diagnosis with multiple family members, including her recently diagnosed sister

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