Rachel’s Story

When I was first diagnosed, I knew very little about breast cancer genetics. Then a family member asked me if I was considering genetic testing before surgery, and I vaguely recalled having read about it. As an Ashkenazi Jew diagnosed in my late 20’s, I felt I needed all the information I could gather about my particular cancer, and I began to ask questions about BRCA1 and BRCA2 genes and their connection to Jewish women.

I met first with a genetic counselor who was both informative and reassuring. She answered my questions, as well as those of my mother and sister who accompanied me. We sat together, the four of us, to explore our family’s medical history, and it was painful to recognize how much of that history we had lost during the Holocaust. With the information she gathered, the genetic counselor thought it likely that I would not be a carrier of the BRCA1 or BRCA2 gene mutations. Nevertheless, she took the time to review with me the benefits and downsides of testing. Ultimately, she left this important decision to me.

...28 years old with breast cancer of unknown origin

I chose to be tested because, at the time, I was struggling to decide whether to opt for a lumpectomy or a mastectomy. Raising young children at the time of my diagnosis, and terrified of the prospect of developing breast cancer a second time, I was prepared to opt for a bilateral mastectomy if I tested positive as a carrier. At the same time, I was comfortable with my doctor’s recommendation to have a lumpectomy if I tested negative.

As confident as I was with my decision to be tested, the wait for the results was anxiety-provoking. I worried about the effects of my decision on my mother and my sisters, and second-guessed whether or not I would be strong enough to undergo more difficult surgery if I was in fact a carrier. When the genetic counselor called to tell me I had tested negative, I was flooded with a mix of emotions. On the one hand, I felt relieved that I did not have the added anxieties of a carrier. On the other hand, I felt as though I were back where I began – 28 years old with breast cancer of unknown origin. Still today, I wonder if there are gene alterations, as yet unidentified, that could explain how breast cancer struck a woman as young and as healthy as I felt the day I was diagnosed.

I feel comfortable with my decision to have undergone genetic counseling and genetic testing. Ultimately, I believe I had all the information I needed to make important decisions about my health, decisions that will benefit my family for years to come.

Leah’s Story

I had always thought that when breast cancer’s origin is genetic, the mutation travels through the maternal side of the family, and so I would be spared even though my father’s sister died of the disease as a young woman. After my diagnosis at age 25, my family struggled to understand the reason, finding it almost impossible to admit that genetics may have come into play. I vaguely remember my surgeon gently telling me to consider genetic testing, but I was too stunned and frightened at the time to think about anything but the immediate present and how I was going to make it through one more minute, one more day.

As the months passed, however, and I began to breathe again, I started to read about BRCA1 and BRCA2 and realized that testing was something I wanted to pursue at some point. When my surgeon informed me at a follow-up visit that she had found residual cancer in my breast despite a lumpectomy and chemotherapy, and that I would need a mastectomy after all, I decided to meet the genetic counselor and have the test done. If I tested positive, I would opt for a bilateral mastectomy and then get on with the rest of my life.

The counselor was kind and informative, spending over two hours with my parents and me to answer our questions and to discuss all of the options for myself and the other women in my family were I to test "You tested positive for the BRCA2 mutation" positive as a carrier. She made sure to explain that surgery, albeit the most aggressive approach, was not the only option for prevention of a second cancer.

Waiting for the results was terrifying, but hearing the counselor say the words, “You tested positive for the BRCA2 mutation,” was actually a relief. While it was scary to think about the implications for the future, I finally had both an explanation for what had happened to me in the prime of my life, and a clear plan for what to do next. Now, as I am slowly adjusting to my newly reconstructed breasts, I feel comfortable with the decisions that I made, both for my sake and for that of my husband and children. I only hope that by the time my baby daughter is old enough to worry, there won’t be a reason to worry anymore.

Sara’s Story

Even before I was diagnosed with breast cancer, I knew a great deal about genetic testing. Many of my family members had been tested because of a strong family history of breast and ovarian cancer. I even participated in a study about familial cancers, which included optional genetic testing. Nevertheless, I chose not to be tested.

I chose not to be tested because I made the same medical decisions I would have made had I tested positive

Once I was diagnosed with breast cancer, I chose to have a bilateral mastectomy and an oopherectomy, surgeries that I was informed would significantly reduce the chances that I would develop ovarian cancer or again be faced with breast cancer during my lifetime. I chose not to be tested because I made the same medical decisions I would have made had I tested positive. I was also afraid of the effect a positive test result might have on my family and my health insurance. I had heard that there are laws to protect me against discrimination by health insurers, but I wasn’t ready to take the risk. Finally, on an emotional level, I needed to cling to the hope that maybe, just maybe, my breast cancer was simply the result of bad luck and that I was not at greater risk than anyone else.

I do worry about the possibility of passing a genetic predisposition for breast and ovarian cancer on to my children. My hope is that there will be an actual cure for breast cancer in the next twenty years and that genetic testing will not be an issue. For now, I have chosen not to be tested. Perhaps one day I will reconsider, if my children want to know the results. I can always change my mind.

The above information is reprinted with permission from the Breast Cancer Genetics and the Jewish Woman, copyrighted 2005 Sharsheret, Inc. All rights reserved to Sharsheret: Linking Young Jewish Women in Their Fight Against Breast Cancer

The information provided is for informative purposes only and in no way is intended to give either medical or halachic guidance. Please consult your doctor or rabbi for any questions in these sensitive areas.