Anonymous

BRCA 1 diagnosis - any others out there?

I have known for more than 5 years that I was BRCA 1 positive with a mutation for tumor repression - every woman on my mother’s side of the family has had early onset breast cancer (30s) and ovarian cancer by 40-45, with all but my mother, deceased. I am almost 32 and am actively thinking about when to perform preventative surgeries - with ovary removal recommended no later than age 37 and a full mastectomy prior to that. A large pill to swallow now that I am getting closer to that age and to top that, undergoing IVF. My joy though is that my almost 2 year old son, conceived through IVF PGD, does not have BRCA 1 - makes everything worth it! Anyone else have experience with a BRCA diagnosis, preventative measures and/or PGD IVF?

  • Nessa
    Oct 16, 2018

    I found out that I was BRCA2 when I was 5 weeks pregnant. (My daughter is 1) I am 32 and plan on doing screenings until I am done having children. I don’t know if my daughter has the gene and won’t know until she is atleast 18, I am hoping that there is better technology out there by then! My sister has has her double mastectomy and plans on ovary removal in the next couple of years. Her biggest advice is to do some major strength training before the mastectomy... I don’t have much advice but thought I would chime in since I am in the same boat as you.

  • Anonymous
    Oct 17, 2018

    Thanks Nessa for responding! We are definitely in the same boat and I also hope the technology continues to improve. With BRCA 2 - is the recommendation with ovary removal to also supplement after the fact with hormone replacement therapy? Makes sense given you go straight to menopause in one day but still trying to muddle through the advice as I am a bit nervous how my body/mind will respond going through that in my 30s. Good tip with the strength training - I will keep that in mind.

  • Nessa
    Oct 17, 2018

    I have no idea as I haven’t gotten that far... I am probably at least another 5 years away from the mastectomy and then another couple of years before ovary removal. There are a bunch of Facebook groups you should join! I haven’t posted in them but they seem like a great group of people and very knowledgeable!