DCIS plus BRCA 1 gene mutation

Hi Wtrz

Welcome to the forum and sorry to hear that you were diagnosed with breast cancer and that you have the BRCA 1 gene. It’s perfectly understandable that your head is all over the place it’s a lot to take in. While I haven’t been through similar I noticed that you haven’t had any replies yet so I thought I’d reply to you to welcome you to the community. There’s a forum for BRCA positive patients that you can also join to get support from those in your situation. You can find it in the Cancer experience forms.

Wishing you the best of luck with your surgery and any other treatment you may have.

Best wishes

Daisy53

Thank you for taking the time to reply and I will take a look at the BRCA forum xx

Wtrz- I am happy to share my experience with you for thought. I was told I tested positive for BRAC2 gene mutation in April last year. I had very good counselling (royal Marsden) several times. I was not ready for preventative mastectomy at all mentally but given my family history of cancer it was for me always a matter of timing when I think about it. Anyway…I then got diagnosed with breast cancer in December last year so not long after and straight away I knew I wanted bilateral mastectomy. My reason being 1) I had lobular breast cancer which had no symptoms and it turned out to be 4.4cm with micro metastasis in one sentinel node and the healthy breast turned out to have a lot of changes with LCIS found which may never turn cancerous but am I willing to take that chance? Lobular cancer is very hard fo detect - I had 3 mammograms and showed nothing but only a diligent radiologist saw something under ultrasound but size assessed wasn’t correct but he still found it, And 2) it was explained to me how I feel about the risk when I was told about the gene mutation. If you are happy to live with the risk and do close monitoring then absolutely your decision and choice. When I was told I had cancer I decided to remove that risk entirely or reduce by 95%. 

Hopefully something for thought for you and helpful and not caused more confusion? But wishing you nothing but the best and a good speedy recovery for you xx

Thank you so much for taking the time to reply. I felt pretty sure I would go for the monitoring option however, the BRCA issue has changed my thinking. It’s been recommended I have ovaries / fallopian tubes removed too as my Mum died of Ovarian cancer.

Appointment due with surgeon to discuss the recommendation re surgery.

Thanks for sharing your story and for the good wishes xx

Wtrz - sorry to hear about your mum. I can see your challenge now. I did elect to have an oophorectomy in November last year as that was more straight forward and allowed me to reduce my risk of ovarian cancer. My cancer is highly oestrogen receptive so at least it was no longer being fed, well what little of it anyway! I was already menopausal so it did not push me into an early one. I am unsure your age but I appreciate a lot to think about. Mine was one after another but sounds like you need to think about all of it. Again best of luck with your decision and best wishes to you xx