My Experience

My mother was diagnosed with breast cancer at age 48. I have always been concerned about my health in general and breast cancer more specifically. I thought about being tested several years ago and wasn’t sure if I wanted to know. I thought if I tested positive I would live my life in fear, believing that I would get breast cancer and die from the disease. However, as I got older and once I had a child of my own, my thinking changed. I was a mom, and I had to be around for my daughter. I came to a place where I wanted the information, no matter what the results.

I had many conversations with trusted family and friends about what the results would mean. I knew that if I tested positive for the genetic abnormality I would not choose an elective mastectomy. But I was open to MRI, ultrasound, yearly mammograms, chemoprevention and/or involvement in research studies. I felt that I not only wanted to know but needed to know.

Before the test, I was asked to complete an extensive personal and family history. I had long conversations with both of parents and learned not only about my cancer risk but also other medical problems.

I met with a counselor who reviewed my personal and family history. She asked me about the reasons for wanting the test. She explained the test and what the results would mean. One thing that I had not known about prior to meeting with the counselor was that positive results would not only mean a significantly increased risk for breast cancer but also an increased risk for ovarian cancer. This actually frightened me more as there is no reliable and accurate test for ovarian cancer and when it is detected, it can be fairly advanced. The counselor strongly encouraged me to have my mother tested before getting tested myself. I did not think that this would be something my mother would be open or interested in, and I did not want to have my decisions about my healthcare based on another person’s choices.

After a lengthy conversation with the counselor, she informed me that I was eligible for the test. I had blood drawn. I was told to call and schedule a follow up with the oncologist in approximately 2-4 weeks when the results would be in, as they had to be sent out-of-state. I scheduled the follow up and met with the oncologist.

I had my husband accompany me as I felt that I would need support if the results were positive. The oncologist informed me that the results were negative; I did not have the genetic mutation. She did talk with us about the recommendation for routine screening, monthly self-exams and yearly mammograms due to the early age of breast cancer in a first degree relative. The oncologist also reviewed my risk for other types of cancers and recommended, based on my family history, that I have a colonoscopy at age 40.

Due to the negative results, I definitely felt a sense of relief. However, due to my family history and the increase rate of breast cancer among Ashkenazi Jews, I still plan to continue with any and all recommendations for screening. It also was a positive experience in that I faced something difficult with the support of family and friends with the knowledge that I would be able to cope no matter what the outcome.