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BRCA 2 carrier developed breast cancer post prophylactic bilateral mastectomy to reduce risk of developing breast cancer

Posted by


I wonder if you could help...I am a BRCA2 carrier and four years ago had a prophylactic bilateral mastectomy and immediate reconstruction using LD flaps.

There are forums and support groups regarding women who have been through similar to the above.

However extremely sadly and rarely (1%) I developed Grade 3 breast cancer with lymph node invasion a year ago and have since had my right breast deconstructed and removed altogether, six cycles of chemotherapy, 15 sessions of radiotherapy and am about to go on a 1-year trial drug.  

I feel very isolated about my situation because I do not know anyone else in my situation.  Up until a year ago I could celebrate with BRCA carrier women who had bravely undergone prophylactic mastectomy to avoid or decrease the development of breast cancer, but now I do not have anyone to share my story with and relate to because I think it is extremely rare.

Do you know how I could find other women (support groups) in my situation?

With many thanks.

[Edited by Admin]

Posted by

Hello Saskia and welcome to the community. Could I point you to the active Breast Group . There you will find ladies with a wide range of experiences in this area and may be able to help. It may be an idea to copy and paste your above post in the group. Best wishes.

Best wishes to All,   rily.  What is a Community Champion ?
Posted by

Hi Saskia

I can't find the words to commiserate with what has happened to you.  What an ordeal to go through and then find it hasn't achieved what you hoped it would, and then to feel isolated because your situation is uncommon.

There is a BRCA group as part of this community and it could well be helpful to start a new discussion thread within the BRCA group, so others are aware that you would like to make contact with people in a similar situation. 

Have you come across the US website FORCE which is for people facing the risk of hereditary cancer, and their message boards?  I guess just based on the numbers in the US that you are more likely to come across people there who have experienced something similar.

Even if you don't come across others who have experienced developing cancer despite having had risk-reducing surgery, I hope you might find people who can support you in this community; we might not fully understand your grieving from the past (having surgery which didn't do what you hoped) but I am sure there will be people who can support you in making the most of the present and looking forward to the future.

Is the trial drug you are about to try a PARP inhibitor?

Do keep reaching out for support and all good wishes