DCIS removed but... gene mutations... now what and family thinks I should be happy

deese1027
deese1027 Member Posts: 1
edited November 2024 in Just Diagnosed

Diagnosed with DCIS (ER+/PR+) in Sept. Had it removed in Oct. Doc talked abt possible radiation and/or hormones even though I'm one of the "lucky" ones- HA! Now I'm positive for CHEK2 and RAD51C w a family history of ovarian and colon cancer (1 + 1). Waiting to hear back from gyn to screen for ovarian cx and sons need to be tested for gene mutations. Family wants to know why I'm not happy w cx having been removed and why I'm putting things like my own b'day and the holidays on hold for a minute. I am a do-er but this is overwhelming!

Comments

  • moderators
    moderators Posts: 8,783

    @deese1027 Yes, it is overwhelming. Take it at your pace. We here really understand you. 😍

    Please keep us posted!

  • tigglewinkle
    tigglewinkle Member Posts: 42

    I completely understand. I was surprised at how unnerved I became after finding out about a chek2 mutation. It really can feel overwhelming and I find myself consulting way too much with Dr. Google. Do you have a session scheduled with a genetic counselor?

  • harley07
    harley07 Member Posts: 389

    @deese1027 - I just noticed this thread. Since you have the RAD51C mutation, I would strongly recommend seeing a gynecological oncologist regarding the potential for ovarian cancer as they will have a more nuanced approach to this mutation than a gynecologist.

    I was diagnosed with BC and a RAD51D mutation in late 2020. It was recommended I see a gynecological oncologist to consider a prophylactic BSO. I finally got around to having the BSO surgery in March 2024 and oops - it was too late. Ovarian cancer was discovered in both ovaries, both fallopian tubes and the pelvic washings. This is not likely to happen to you, but thought I would pass my story along.

    Take care.