BRCA1 positive - Newly Diagnosed TNBC
Hi, I was aware that at some point I would get breast cancer. My Grandmother lost 3 sisters to it, she passed the mutation down to my dad and his sister. My aunt then died of ovarian cancer 6 months after diagnosis. I have had prior myeomectomy and grew another huge fibroid, so had a complete hysterectomy, including ovaries and fallopian tubes. Super glad I will never get the ovarian cancer part of this mutation. For some reason, I did not know how strongly TNBC is tied to BRCA1. I was shocked it was that type. Also, my Ki-67 is 97. That scares me. I would love to know how many out there have a really high Ki-67 score and how that affected your treatment. I have chosen double mastectomy and going flat. I cannot believe how much negative feedback I am getting for going flat. I am shocked. Everyone assumes you will get implants. I have autoimmune disease too and I do not want anything foreign inside my body. I take Enbrel, Methotrexate, Dupixent, am diabetic, etc. I am scared that all of this will affect my treatment. Will not know until surgery if its in my lymph nodes. Post surgery they will decide if I require chemo. Right now its small but with that score of 97, something tells me not for long. I would love to hear from others that are BRCA1, have co-morbidities, etc. Any responses would help tremendously, I feel strange not knowing anyone else with this. Thanks so much!
Comments
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Hi @bunnywhiskers7, welcome to Breastcancer.org. We’re very sorry that you’ve had to join us, but we’re glad you found your way here.
Until you get responses from others here, you may find our Living Without Reconstruction After a Mastectomy category especially helpful, since many members there have chosen flat closure and can share their experiences and practical tips.
These pages from our main site may also be useful as you’re making treatment decisions and waiting for the next steps:We hope these resources help answer some of your questions, and we hope other members with BRCA1-positive TNBC and autoimmune conditions will stop by and share their experiences as well.
Sincerely,
The Mods
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Hello again, @bunnywhiskers7! We just wanted to check in to see how you’re doing. 🤗
Anyone else here with BRCA1-positive TNBC or a high Ki-67 who can relate to what @bunnywhiskers7 is going through ? And if you’ve chosen to go flat or had other health issues to consider during treatment, please share your experience if you can. It might be really helpful to someone else reading along too.
Sincerely,
The Mods
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