comscoreDjabi53's Story: Learning the Impact of Family History on Risk, Even Without a Genetic Mutation

Djabi53's Story: Learning the Impact of Family History on Risk, Even Without a Genetic Mutation

Djabi53 is at high risk for breast cancer but tested negative for genetic mutations.

Djabi53 is a member of the Community.

I too have had genetic testing done — I am the only one in my family who has been tested. I think I'm glad I had it done, but I can't really say it was a positive experience for me or my daughter. My risk factors are mother and maternal aunt with breast cancer post-menopause, cousin died of cancer premenopause. Maternal uncles died of different cancers — but in their 80's. My probability for a genetic piece was low but I still had the tests. Everything came back completely negative — no inconclusives or variables of unknown significance. I'm 62 and was told I have a 3.5% risk of cancer in the next 5 years — 15% lifetime risk (up to age 90). I wish they would also tell you something like, "That also means that you have a 96.5% and 85% chance of not getting cancer."

I do not have cancer. I have bilateral faint calcifications — biopsy on one breast came back benign, fibrocystic changes only, no abnormal cells. Calcifications in other breast do not warrant biopsy right now. I'm on an every 6 month diagnostic follow up for 2 years — told this is protocol for all calcifications.

When I was given my genetic testing results, my oncologist and genetic counselor enthusiastically congratulated me on my negative results. But before I could even take a breath and enjoy that moment, they said, "However, you are still at increased risk because of family history." They recommended I remain in a high risk program, and take Evista. They also told my daughter (age 35) that her risk is slightly increased — even though I (her mother) don't have breast cancer. I didn't feel that I could reassure my daughter of much, and now it has been put in my daughter's mind that her risk is slightly increased. GYN told my daughter that her risk is not increased unless I get cancer. Did I miss something at my genetic counseling appointment? I walked away with the same anxiety, more questions than answers, and without relief about risk. I didn't expect that they would tell my daughter her risk was slightly increased when her mother hasn't been diagnosed with breast cancer. I keep reading that most women who get breast cancer do not have family history of breast cancer. It seems like when your mother has breast cancer, you are considered high risk regardless of tests.

I am trying to balance out the fear/anxiety, and unanswered questions that I've gotten from medical doctors/testing with Dr. Bruce Lipton's Biology of Belief and Epigentics — I am not my genes. I hope that one day we can all find some peace around this challenging issue. I am grateful for this community and I thank everyone for reading and/or sharing their stories, insights, and coping strategies.