Breast cancer - mastectomy or not

[Demelzatheseagull]

Hi allI was diagnosed with Stage 4a high grade serous OC in September 2022 and I've just had my last post-surgery chemo (for the time being at least)😊. I'm BRCA2 and aged 60 and the hospital genetics team have been telling me about the risk of getting breast cancer (as if ovarian cancer wasn't enough!). I'm weighing up mastectomy versus yearly mammograms and self-examination. I'd be really grateful to hear from anyone who's been in a similar position x

[Lizjj]

Hi. I am /was in same situation. Braca 2 ...diagnosed with HG ovarian cancer in 2012.... at 56 years old . I have not had a mastectomy . I am now 67 and on Olaparip parp since feb,2019. Presently no sign of beast cancer. I have just had a mammogram done in February.

Are you on a parp inhibitor?

Wishing you all the best.

[Demelzatheseagull in reply to Lizjj]

Hi Lizjj. Glad to hear you're doing well 11 years on. I'm seeing my oncologist next week to talk about PARP inhibitors. Will definitely go with mammograms for the time being but the genetics team scared me a bit with the stats they gave for getting breast cancer.

[Katmal-UK]

Hi. I was diagnosed stage 3b OC, HGS, BRAC2 in Oct 2007 at the age of 48 and offered a mastectomy but opted for annual mammograms. I’ve had 2 recurrences, taken part in 3 clinical trials (currently on trial for Olaparib which I have been on since Jan 2014) . At the time I was given a prognosis of a couple of years so decided not to put myself through another major op. It’s not something I’ve regretted. I’m currently 4 months off 10 years NED. Good luck in your decision xx

[Dales-Rambler]

Hi Demelzatheseagull

Slightly different here (HGSOC 3c) and BRCA1, so the risks are meant to be lower than BRCA2 . However, I didn't rush into things. At my inititial diagnosis and treatment in 2015 I ended up with a temporary Ileostomy, so chose the annual screening route until I had that reversed in 2017. I couldn't cope with the thought of even more surgery! I then revisited the mastectomy option in early 2020, spoke to the breast surgeons and CNS regarding all the options, which was very useful. In the end I was almost ready to commit to surgery when I had a recurrence, so that forced my hand and I just concentrated on the OC. PARPS weren't available to me in 2015, but I've been on them 2nd time around and so far so good.

It's a hard decision, isn't it? All I can say is do your homework and get as much info as possible before deciding and don't rush into a decision.

Best wishes.

Sally

[Trickysite]

the parp, Olaparib, is recognised as a preventative against breast cancer. You should check this out with your team. I am BRCA2 and have stage 4b but have been doing well on Olaparib for last 18 months. I did have breast cancer and a single mastectomy at 56. Very luckily, I did not get OC until 75 years. At my first OC consultation, I asked about having another mastectomy but onc said not worth discussing at the moment. As BRCA, you should be offered yearly MRIs in addition to mammograms. I am just having yearly mammos but that is because the physical position for a breast mammo is difficult as I also have a genetic muscle condition , Ehlers Danlos. Good luck, Emma x

[Numi]

I was diagnosed with Stage 3 OC in 2016, and also found out I had the BRCA2 gene defect. I opted for annual mammograms, as I couldn't cope with more surgery at the time. In 2021 my mammogram showed something and a biopsy confirmed it was breast cancer. There was no lump and it couldn't be felt at all. As I was on chemo for a recurrence of OC, surgery was deferred. I wanted a double mastectomy to get rid of it, and the chance of it happening again. The surgeon I saw said they wouldn't do that, only a lumpectomy - saying, but not in the exact words, that the OC would get me before the breast cancer did! I then developed blood clots on my lungs and any surgery was too high risk at the time, and surgery was deferred again, so I was given Letrozole when I finished chemo as the biopsy showed the cancer was estrogen receptive, which is apparently unusual when you have OC too. Fast forward to last month when I saw another breast surgeon and had mammograms and ultrasound, and the tumour could no longer be found. So I don't need surgery at all and the Letrozole has worked really well. So I'm back on to annual reviews as far as the breast cancer is concerned. If I could go back, I'd chose to have a mastectomy and be done with it, but you have to do what's right for you and your circumstances.

[Demelzatheseagull]

Thanks everyone for your replies. Lots of thinking to do...

[Southernsas]

Hi there, I am BRCA1 positive and had stage 1 OC in 2019. Had complete hysterectomy and 3 treatments of carbo/taxol. I chose to go farther and have the double master with reconstruction. I figured with my high risk there was a great possibility I would get Brest cancer. My 2 sisters also tested positive for BRCA1 and they both went on to have a hysterectomy as well as double mastectomy prophylactically. We have a lot of BRCA1 cancers in our family.