comscoreQueen_Celeste's Story: Unexpected Genetic Testing Results After a Diagnosis

Queen_Celeste's Story: Unexpected Genetic Testing Results After a Diagnosis

Queen_Celeste was never told to have genetic testing until a diagnosis at age 60.

Queen_Celeste is a member of the Community.

I was diagnosed with breast cancer in February 2015 (age 60) and underwent genetic testing then at the request of my surgeon. Neither she nor her nurse explained anything about it or asked me any questions. It was only after reading up on it that I learned that being Ashkenazi [Jewish] was a risk factor. No doctor, nurse, or mammogram technician had ever suggested or even mentioned genetic testing to me. I don’t think that any of them knew what "Ashkenazi" is. That’s what I get for living in Kansas!

My mother had breast cancer, but there is no other breast or ovarian cancer in my family that I know of. I know almost nothing about the medical history on my father’s side. My paternal grandmother died at age 31, and some great-aunts and cousins around age 60. My sister wants to be tested and is appealing the insurance/Medicare denial of coverage. (They don’t know with whom they are dealing – they should just give up!) I don’t think my brother has been tested, and neither have my first, second, or third cousins that I know of. I have given them all the information I have. You can lead a horse to water....

I was tested only for the three Ashkenazi founder mutations and am BRCA1 positive. Insurance covered the testing costs and my copay was $75. I had a bilateral mastectomy in April, chemotherapy May-September, and exchange surgery in October. I will be undergoing a prophylactic salpingo-oophorectomy-hysterectomy (fallopian tubes/ovaries/uterus) on November 17.