CHEK2

Hi! I found out I have chek2 a year ago last May after my mother tested positive for it. I am 45. My mother has had BC three separate times and there is a strong family history. I get checked now twice a year, one mammogram and one mri. I also think about the double mastectomy as opposed to going through all the tests and "waiting" each year. It seems inevitable for me but I try not to think about it and hope for the best. They don't know so much about chek2 yet. I understand what you are going through!

hello;

amnew to this network and offer what i know, now as Ive seen 5 dr for consultations in last 2 weeks. i was just diagnosed with small high grade, DCIS. found out 6 months ago i am chek2 positive (from a blood test my sister encouraged me to do, as she did where she was positive - she had DCIS 9 years ago, had a mastectomy on that one breast and has been healthy since). I had a lumpectomy 3 weeks ago to fully diagnose the path as DCIS from the in office - 2 different Dr read it differently going into the full surgical biopsy 9 one said probbaly DCIS, one said benign)... important to challenge path too. what I'm learning, as I decide whether to get a prophylactic bilateral mastectomy for prevention vs radiation is; for chek2, my Dr recommend alternate 6 month screenings; MRI, then mammogram/ultrasound, then MRI etc. The curious thing was my MRI was normal, 3d mammogram normal and ultrasound picked it up - then a week later prior to surgery prep, MRI STILL said normal and didn't pick it up - so need all 3 surveillance. also, I understand there are 2 types of chek 2 mutation and most research quoted is on the one that is 110..., i have a a different one with less research.