brca 2 and ovarian cancer

Hi, Im new here.  I have ovarian cancer, and am now on olaparib, having done my chemo.  When I was told that I had the brca 2 gene, it didnt really bother me as I wanted to sort out the cancer before i thought of anything else.  15 months on, I have been thinking about this a great deal and have decided that i want to have a double mastectomy to really lessen the odds of breast cancer.  Having spoken to my geneticist, it appears that while having teatment for cancer it is not possible to go ahead with the mastectomy.  I really dont agree with this, surely risk reducing surgery would be high up in the case of brca mutations.  I am 55 and feel like I am just one in a line waiting for a bad diagnosis.  Surely it would be better to have the op rather than just waiting for the cancer to appear.

  • Hi , I don't know much about about BRCA 2 but as no one has responded to you I thought I would so I can bump you up to the top of the list where someone who knows more might see it and respond.

    It might also be a good idea if you also put your post on the main breast cancer forum HERE as this forum is very active and you might have better luck finding someone there.

    Personally what I was told about having a mastectomy was that you can still get cancer on the mastectomy side so I don't think you eliminate the risk.  Maybe you minimise it but I don't know.  My thinking when I had to decide between lumpectomy vs mastectomy was that I wanted to give any potential future cancer the chance to come back as far away from my chest as possible, by keeping my breast.  My surgeon told me that with a mastectomy the cancer can come back in the scar tissue.

    My cancer was hormone receptive which I know isn't what you are talking about but I wonder if similar logic would apply in your case.

    It's best to go back and discuss it with your medical team.  I would be inclined to follow their advice so if they say you should wait till your current cancer treatment is finished then I would do that but perhaps ask them to explain why as there must be a reason.

    Wishing you all the best with your treatment x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi I don’t know much about brca2 other than it’s more of a risk for ovarian cancer although there is definitely a risk to the breast as well. You can go on Facebook there are groups for brca1/2 and the women on their know all about it . I’ve brca 1 dx now 3 rd time and it’s stage 4. I did everything to minimise the risk and it came back in my bones  after all my surgeries and chemo. I’ve just started a new treatment palbociclib which is supposed to be good but my suggestion is find out why they won’t do surgery now . You could take a break from one treatment . They are options and 2nd opinions you can get everywhere. Unfortunately because of covid and chemo and cancer we still have to fight to get answers and it’s hard when you don’t have the fight left. Good luck with it all xxx

  • Hi Tarquin,

    I'm BRCA2.

    I'm no expert but from general reading I think it's hard to compare on a broad spectrum what the highest cancer risks are for everyone with that genetic mutation. It's much more nuanced than that. We can gauge it perhaps on family history, it's likely that the most prevalent cancer within a few generations can be deemed as the highest risk for that person.

    My family is predominantly breast cancer. Maternal Grandmother had BC in her 40's back in the 1960's and mum Mum developed BC at 59. She also had cervical cancer in her late 40's that resulted in a hysterectomy leaving only her ovaries. We guess this meant a delayed development of BC in her late 50's.

    When we discovered the mutation the letter's we received detailed the information regarding our specific dna mutation. This was easier for the Dr's to pinpoint because my Mum was still with us at the time and they had some of her cancer cells stored that meant they could deduce this.

    Also I can't remember if it was in my letter or if it was the genetic councillor who shared my personal risks. I was advised my breast cancer risk before 60 was between 60-70% higher than average population and my Ovarian risk was 15-20% lifetime risk. And then slightly elevated risks of other cancers like pancreas and skin cancer amongst others.

    My Mum's had her right breast and lymphs removed in her initial op in 2008. Initial treatment was successful and she was in remission for nearly 5 years. She was pursuing removal of her left breast and recon when she was diagnosed with a brain tumour. I can't remember if this delay was because Mum wanted to wait or if it was just the general bureaucracy. It took nearly 2 years to get the BRCA2 confirmation for the pair of us.

    We were all devastated by the return, she had 80% chance of cancer developing in 2nd breast and we were so focused on this we weren't prepared for this diagnosis and she was gone within 6 months of this secondary cancer being found in 2014

    I had my preventative surgery at the end of 2015. I pushed for it after suffering from major scanxiety and having false positives at pretty much every MRI screening. Without my Mum and also watching her decline meant I could no longer wait for this.

    This is my story and I hope some of it helps. 

    I agree that the medical teams do have your best interests at heart, but also you are entitled to a second opinion. So even if it puts your mind at rest then maybe this can help you in your journey.

    Love and Light xxx