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Sharing the Gift of Medical Information

by Sue Friedman

After being diagnosed with breast cancer at age 33, and after learning I carried a BRCA2 genetic mutation, which put me at risk for further breast cancer and also ovarian cancer, my initial thoughts were concern for myself. But soon after receiving this news, my thoughts turned toward the implication that my diagnosis had for my family. At the time of my diagnosis, I had scant information about my family’s medical history. We were never a close family, and on both sides of my family, there were few women. I was the only daughter of an only daughter, and my father had 3 brothers and only 1 sister. What I did know is that my paternal grandmother died young of "kidney" cancer back in the 40s. My mother died young of an aneurism, and her parents out-lived her and both died well into their 80s. My father remains healthy and alive to this day. I was never considered at high risk for any type of cancer. I was fortunate that I took exemplary care of my health, and found a benign lump on my first breast self-exam. At age 33, a follow-up mammogram found my cancer. My physicians had always questioned me about family history of cancer, but seemed to lose interest when told that the only cancer in my family was my paternal grandmother, and that she had died of "kidney cancer".

Even after my diagnosis of breast cancer, none of my physicians seemed to take note of the fact that I was 33 with breast cancer, and that my paternal grandmother had died young of cancer. I never made any connection with my grandmother’s cancer, until I stumbled upon an article in a journal about 8 months after my diagnosis. The article highlighted the connection between hereditary breast cancer and ovarian cancer, and also mentioned certain populations that were at particularly high risk for carrying a genetic mutation, which could cause both cancers. It went on to explain the genetic test that was available to determine if someone carried one of these mutations. Several thoughts immediately hit me when I read the article; the first was that back in the 40s when medicine was not as sophisticated, it might have been quite easy to mistake advanced ovarian cancer for kidney cancer. The second was that I might be at high risk for further cancer. The third was that I wanted to have the test.

After much research I learned that prior to having a genetic test, I should see a specialist called a genetic counselor, who would detail at great length the benefits and risks of a predictive test. One of the first things the counselor did was ask me to research my family history both of cancer and of other diseases. I was dismayed to realize exactly how little I knew about my family’s medical background, and how little detail the relatives with whom I was in contact could add. I did find the genetic counseling very helpful and informative, and afterwards decided that I wanted the test. I tested positive for a BRCA2 mutation, which put me at extremely high risk for further breast cancer and also ovarian cancer.

After absorbing the shock of my results, I decided that I must inform the rest of my family. Issues of privacy and possible genetic discrimination were a concern, but not enough to keep me from notifying those who might be at risk as well. As my genetic counselor put it, I "was the red flag for hereditary cancer in my family". I used the Internet to find as many family members as I could, including cousins I hadn’t spoken to in over 20 years. The phone calls weren’t particularly easy to make but I felt I had an obligation to let them know information that I would want to know in their position. Along with my genetic test results I told them how they might find a genetic counselor in their area with whom they might discuss their options.

Through the nonprofit organization FORCE: Facing Our Risk of Cancer Empowered, which I founded, I’ve been able to advocate for the high-risk community. The issue of who should be told about genetic test results comes up periodically. I know of many young cancer patients who were never told about their relatives’ cancer, even though multiple family members had similar diagnoses, which might have forewarned a family cancer syndrome. I also know of survivors who had very compelling reasons not to discuss their medical information with other family members. But the days when a cancer diagnosis is shrouded in shame and embarrassment and whispered among certain family members, and sworn to secrecy are hopefully a thing of the past. In my case there was no doubt that the important and unfortunate information that I was in possession of needed to be shared with my family.

Cancer is one of a number of diseases that can have a hereditary component. We don’t know all the causes of cancer, and it is believed that most cancer is not hereditary. Certainly having a family member who has had cancer doesn’t automatically confer a high risk for cancer on other family members. Nevertheless, medical information such as who has been diagnosed with cancer, at what age, and their relationship within the family tree can be an important and life-saving piece of medical history. Although my cancer diagnosis could hardly be called a positive thing, my sharing of medical information is a gift that I give to my relatives willingly, and hope that the information is received and shared with other family members in this spirit.

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FORCE:Facing Our Risk of Cancer Empowered