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

Hi Twinkle80 - am sorry to read about your Mum and family history.  I have been diagnosed with PALB2 mutation and currently thinking about Tamoxifen use.  I am trying to get an appointment with breast care nurse as worried about side effects and want to explore what support is available, but also want to reduce risk as much as possible. 
I’ve been told I need to reduce my bmi to be considered for risk reducing surgery. 

Hi 

I’m waiting results of gene testing having been diagnosed with triple positive breast cancer at 40 which has spread to lymph nodes, I wasn’t offered testing before as it was only my mum who had been diagnosed. I wish I’d just paid for it as any advantage you can have over this shitty disease is worth it.

I’m currently having treatment, I was offered Tamoxifen at 35 but because we were trying for a family, I didn’t take it. I don’t regret that as we now have a daughter but I wish there was something I could have done to stop this thing in its tracks. 

Only you can decide what’s right for you, you’ll be going through so much already, all I can offer you is what it’s like to be diagnosed. One thing is for sure, having reconstructive surgery is better than the fear for your life hanging over you.  If you already have that fear, it may be the lesser of the two evils. 

If I come back positive for the gene, I will be going for a double rather than single mastectomy and anything else they offer me.

Wishing you support and strength x 

Morning Twinkle80,

I too, received my genetic results last week - just over the phone from BC nurse - carrier of the BRCA2 also. I’m still awaiting my referral to genetics to find out my statistics and possible preventative surgery, but BC nurse warned they might leave me alone whilst on/going through chemo.

It came as a shock and not a shock, if that makes sense? My material grandmother and maternal great aunt both got BC in their 40s, but 35+ years ago. My mum had early screenings, and has always been ok, but they never tested her genetics - probably wasn’t around then? She called her GP straight away (after I got my result) and went to have her bloods tested 3 days later. Results in a couple of weeks, however mum has done some digging with the one remaining great-aunt and out of 8 siblings: 3 had BC, 1 pancreatic and 1 prostate (all which we now know is linked to BRCA2.) 1 great uncle died from something unrelated, but his daughter is a carrier so we’re pretty sure it’s going to be on my mum’s line.

Worried for my two little girls. Looking at is positively they’ll be monitored so closely and we’ll be even further along with treatments by then. Do you have children? Also, hoping my big bro will go get tested soon. 

Hope we can be a bit of a support to each other on this journey? Cancer the unwanted gift that keeps giving!