BRCA2 positive and Tamoxifen

Hi Twinkle80 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I can't help with your question but I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

x

Hi Twinkle80 

My friend was diagnosed with the BRCA2 gene after firstly being diagnosed with what the docs thought was an infection, anyway a few biopsies later and it turned out to be BC. She was then tested for the BRCA genes and found it was BRCA2, she doesn't know yet if its mothers side (she lost her grandmother on her mums side to BC) or her dads side as there is cancer in that side of the family too.

She opted for a double mastectomy as the cancer was in both side lymph's, yes worse on the one side but after a scan or 2 later they found cancer in the other side too, so it was a good choice or she would have been back in going through it again. 

It has been a very rough 12 months for her, with all the treatment, she has been neutropenic all the way through and has ended up in hospital due to infections. The chemo made her poorly, but she is a bloody fighter and has come through it. She finished 3 weeks of radiotherapy on 28th February, she is dealing with a few burns at the moment, and when these clear up she has to go on a chemo drug for 12 months Olaparib, this upset her, she is really worried about side effects again, it seems she has no break at the moment. She has scans this week and next to determine whats next. She has to have a hysterectomy before she is 40, and is hoping to have reconstruction before then too. 

I think with you and the mastectomy would determine on what your results say. How deep it goes, bones etc. We know with my friend it was in the bones and she has a branch really deep too, they hope has been got by the radiotherapy. Again scans will determine this.

We seem to be at a bit of a lull at the moment, unsure what way the treatment has gone, is going and forecasting to go. 

I sincerely hope your journey is a good one for you and as pain free as possible, don't be afraid to ask questions, we found sometimes the nurses/doctors weren't forthcoming with information regarding the treatments. They talk in their medical language, which my friend knew some but others she was left in the dark, so ask, it makes it easier to understand. Keep a journal of everything, write everything down, from first diagnosis to appointments, what you are told, everything. There is also monetary help out there, you will need all this information to fill in the forms, its a minefield.

Good luck and if you do need anyone to chat to I can help you all I can, I don't have BC but I have been on the journey with my best friend x

I am so sorry to hear that your best friend had to go through this. I pray for her speedy recovery. I haven't been diagnosed with breast cancer either. Just tested positive for a genetic mutation that puts me at a much higher risk. Hence my earlier post. 

Oh I am so sorry, I obviously didn't read it properly. 

I have everything crossed for you.

I decided to go one the chemo prevention route as I was not sure about the breast cancer prevention. I was on Tamoxifen.  However I did get breast cancer and it was TNBC.  As I had annual mammograms it was found early.  Stage 1 and no sentinel nodes involved.  I opted for a double mastectomy with breast reconstruction.. You are the only one who can make the decision.

All the best

I am very sorry to hear you were diagnosed with TNBC. I am glad you took good care of yourself and were able to catch it early enough with regular screenings. I am 43 years old and considering 6 month surveillance with mammograms and MRI per talks with my oncologist but feel like a ticking time bomb right now. I feel like I am just waiting for something to be abnormal in my scans to get double mastectomy later with a diagnosis of cancer. This has been the toughest decision that I ever had to make in my life. 

I wish you a long healthy cancer-free life. 

I've been on tamoxifen since February last year. After having breast cancer . Now I'm BRCA 2 diagnosed.  Will ask when I see someone xx