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Making Tough Choices, Living With Fear

by Susan Friedman

I was 33 when I was diagnosed with breast cancer. Like most cancer patients, I wondered, "Why me?" I had been a vegetarian for most of my adult life. I didn't drink or smoke, I had no family history of the disease.

None of my doctors offered any explanation. No one told me that of the more than 180,000 women who are diagnosed with breast cancer each year, approximately 5 to 10 percent have a hereditary form of the disease. No one told me that as a women of Eastern European Jewish descent, I had a much greater chance - one in 40 - of carrying a mutated gene. No one told me that a blood test could determine whether or not I carried these genes.

I didn't learn these facts until I read about hereditary breast cancer in a magazine in 1997, a year after my diagnosis. That's how I discovered that mutations in the BRCA1 and BRCA2 genes are involved in 30 to 70 percent of all inherited cases of breast cancer. I also learned that those who carry the mutations also carry an increased risk of ovarian cancer.

I thought again of my paternal grandmother who had died young of what was described as kidney cancer. It occurred to me that it might have been ovarian cancer. I immediately called my doctors. I wanted the test.

First, I was told, I had to undergo genetic counseling. I didn't think I needed counseling; as a veterinarian I already had a medical background. But what I learned from the genetic counselor prepared me to make some of the most difficult decisions of my life.

I learned that there are no easy answers when it comes to gene testing for breast cancer. Testing positive for the BRCA gene mutations doesn't guarantee that you will get breast cancer. Instead, you are diagnosed with a risk.

The lifetime risk for breast cancer with a mutation can be as high as 80 percent, and the risk for ovarian cancer can be as high as 30 percent, but there may be mitigating factors that have not yet been identified by scientists.

And what would I do if I did have the mutation? The most effective way to reduce my risk was prophylactic surgery to remove my healthy breast and ovaries - a drastic option that doesn't totally eliminate the risk. There are medications like Tamoxifen that might reduce the risk by as much as 50 percent, but these carry side effects and the data are unclear with respect to carriers of a BRCA mutation.

High-risk surveillance is also an option, but early detection hadn't caught my cancer before it had spread to my lymph nodes.

There were also non medical concerns. Science has given us genetic testing, but there are few accompanying laws to protect against genetic discrimination by employers or insurance companies. To guarantee my privacy and to be sure that I had no history of genetic screening in my medical records, I paid for the test without informing my health insurance provider.

The social implications of gene testing were even more disturbing. Would I be shunned for my genetic flaw? Would my young son be targeted as a carrier?

Despite all of these issues, I decided to have the test, and I discovered that I did carry one of the heritable mutations. As the first in my family to be tested, I felt obliged to tell my relatives. I hadn't spoken to some of these relatives since childhood. It's not news that will necessarily bring a family together.

Then came the agonizing decisions. Having just finished treatment for breast cancer, which included four surgeries, four months of chemotherapy, and six weeks of radiation, I now learned I was at risk of further cancer. I was young, I had a happy marriage and a 3- year-old son. I was desperate to lower my risk as much as possible. I decided to have prophylactic surgery.

My husband was supportive of my choices. I knew that I had made the right decision when precancerous cells were found in my healthy breast.

In the two years since my surgeries, I have met other women going through the hereditary cancer risk experience. Many of these women are being given inaccurate information by untrained health-care providers, and are being told that they don't need genetic counseling before making these life-altering decisions.

The choices available for those living with the risk of cancer are gut-wrenching - living with fear, relying on imprecise surveillance methods, taking medications with side effects, sacrificing healthy organs.

There are no right or wrong decisions in this highly personal and difficult journey, but the fact that the options are so imperfect and the consequences so drastic underscore the need for more research and education in the field of cancer genetics.

Copyright Sue Friedman. Further reproduction or distribution is prohibited without permission.

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