Early stage BC + BRCA 1 positive - has anyone declined a risk reducing mastectomy?

Hi

I had a lumpectomy and a lymph node removed on 26th Feb  like you awaiting a treatment plan and to have the Brca gene testing done. I am 59 with a family history of breast cancer.

I only got offered a lumpectomy but in hindsight would of preferred a mastectomy as recommended by my GP. I may need to have one anyway.

I know I am a lot older than you but think about the future, talk to macmillan or your breastcare nurses get loads of advice before you make up your mind....

Hi,

I had stage 2a breast cancer and found out I had a brca1 mutation at the end of treatment in spring 2022. I had a double mastectomy one year later in spring 2023 (had to wait one year after finishing radiotherapy before they did the op - you can read on my profile).

I am in France, so the protocol could be slightly different, but if I didn't opt for a double mastectomy, I would have been offered annual breast MRI, mammogram and ultrasound for life (every 6 months for the first two years), and for the first 5 years after my cancer, 6-monthly blood tests which monitor tumour markers (which are good, but not fully reliable!).

Also, there is a drug called olapraib which is a targeted treatment and can be prescribed if you have brca mutation and your cancer is HER2 negative to help to reduce the recurrence/new cancer risk. Usually, it is only prescribed for one year, as it's a very pricey drug, but it reduces the risk for several years. I took this during the year that I waited from the end of my radiotherapy and it made me feel much more at ease.

I fully understand that it's a lot to take in at first, it's such a big decision to make when already you're coping with so much at the minute and really hard to know what is the right thing for YOU (forget anyone else, it's only you that counts). Personally, I found the year I had between the end of my treatment and my mastectomy gave me the space I needed to breathe a little and to really reflect on what was best for me. 

If you haven't already discovered it, there is a UK charity called brca chat which has some very useful resources such as a mastectomy gallery (with different types of reconstruction/not), meetup events, blog articles, etc. It helped me a lot to see different surgical results and when my operation came round I felt fully prepared.

If you have any additional questions or if I can help in any way, don't hesitate to ask! Wishing you the best of luck with your results and treatment plan xxx