TNBC Stage 2A - BRCA 1 positive - Double Mastectomy Conundrum

Hi my name is Lisa I was diagnosed with TNBC in 2018 I was then 47. I also had lymph nodes involvement.  I tested positive for the BRCA1 gene.  I had 6 cycles of chemotherapy 1 every 3 weeks . I then had a double masectomy, full lymph node clearance and as I didn't have a reconstruction they also took my overies and fallopian tubes out as that's probably the next place it could of gone too. Then 6 weeks later I had 15 rounds of radiotherapy.  So I would advice you to go for a double masectomy and also speak to them about having your wife's overies and fallopian tubes removed so it reduces the risk of reocurence. I wish your wife all the luck.  

Thank you so much, Lisa

Hi, I’m sorry you find yourself in this position that nobody wants to be in.  I had two surgeries as my margins were not clear after the first.  My lymph nodes were clear.  I had the option of a mastectomy after the first surgery.  I asked the surgeon if I had a mastectomy would it lessen the risk of the cancer returning.  He said it wouldn’t.  I had 10 sessions of radiotherapy and am on Anastrozole for five years.  I didn’t have the Brca1 gene.  Has your surgeon gave you the options?  I was fortunate my surgeon was happy to give me choices and his opinion.  I wish you and your wife all the very best in whatever you decide.  I am two years on xx 

I was diagnosed with tnbc stage 2a in 2021 and found out I also have a brca1 mutation in 2022. I was 35 at the time of initial diagnosis. In March 2023 I underwent a preventative double mastectomy. So a very similar situation to your wife.

There is no right or wrong answer as to whether or not she should have a mastectomy, but whatever she feels is the right choice that gives her the most peace. For me it was a no-brainer to have the mastectomy because I felt like I would have always been waiting for a new cancer to develop and given myself more anxiety had I not. I wanted to do all I could to not live through the same cancer experience again. Since I had the operation, I have more confidence that my body will not try to kill itself again and I am more relaxed. That being said, some women are happy to have annual scans to check for signs of breast cancer if they don't opt for a mastectomy. 

In regards to the ovaries, this is something they look at once you hit 40. My sister (just turned 40 this year) also has a brca1 mutation and had her fallopian tubes removed this year and will have her ovaries removed once she goes through the menopause to reduce the risk. So this is not something you need to think too much about for the time being.

There is very little concrete data to say what the actual risk is, which makes things a bit harder. I hope it is not against the rules to say, but if you google 'brca risk calculator Stanford' there is an online decision tool they have created to predict the likelihood of dying from breast/ovarian cancer for those with a brca mutation given your age and what preventative options you go for and at what age. It's not perfect and I'm not sure how broad the data is, but perhaps it gives you an indication of risk based on different scenarios.

Wishing your wife the best of luck on her journey and with her chemo this week. If either of you have any questions, I'm more than happy to help! x

Thank you so much. 

Were you also on Olaparib medicine regime before the double mastectomy ? 

As doctor has given us an alternative to Double Mastectomy but I am sure this medicine would also have it's own set of latent effects on the body . 

You're welcome! Yes, I took olparib for one year and I had my mastectomy once I finished taking it. It was reassuring for me to have access to a medication that would help prevent a recurrence/new cancer and it gave me breathing time to decide about my mastectomy. 

Personally, I tolerated olaparib very well - the first couple of weeks I felt a bit like I'd been hit by a bus, very tired, achy, a bit flu-like and dizzy. But then once my body adjusted, it didn't really have any impact on my day-to-day life. It temporarily reduced my kidney function (so it was very important to stay well hydrated) and my immune system was a bit weakened, but once I stopped, those effects were reversed. I had regular blood tests throughout the year and appointments with my oncologist to constantly check everything was ok (I think every two weeks at first, then every month, then every 3 months). 

Now I think about it, I think I read at the time about some trials testing vaccines for tnbc/brca mutation patients in place of a mastectomy (sorry I can't remember the name), but since it was a randomised controlled study, I didn't want to have a risk that I was taking a placebo! But if it interests you, you can try to find it and see if there is something available in your area.