By: Sue Friedman
My first encounter with hereditary cancer came in 1996 when I was 33. I was early in my career as a veterinarian, a mother to a one-year-old, and preparing to have another child. Then, I was diagnosed with breast cancer.
My diagnosis came out of the blue. I didn’t have a profound family history of cancer. In fact, I was the first person in two generations to be diagnosed. Genetic testing for breast and ovarian cancer had been available since 1995, but my lack of family history meant that my original health care team missed the opportunity to offer me testing early in my diagnosis.
Knowledge Is Power
I didn’t learn that I carried a BRCA2 mutation until 1998, after I experienced a recurrence of breast cancer, while I was undergoing treatment. My genetic counselor explained that my mutation, which I inherited from my father, put me at very high risk for another cancer diagnosis.
February is National Cancer Prevention Month, which leads me to consider: If I had known about my mutation earlier, what could I have done differently to confront cancer on my own terms? Perhaps I would have been able to avoid chemotherapy, radiation, lymphedema and multiple additional surgeries.
Despite learning about my mutation late, I was still able to take steps to lower my risk of yet another diagnosis. After finishing breast cancer treatment, I chose to remove my remaining breast and my healthy ovaries, which were also at risk for developing cancer associated with a BRCA2 mutation.
A Need for Support
As I tried to regain a sense of normalcy in my life, I found the side effects of surgical menopause and treatment left me too fatigued for work and parenting. Anxiety about another cancer recurrence consumed me.
My options for support were painfully lacking. I didn’t have a single peer who had gone through young-onset cancer, mastectomies, early menopause or genetic testing. I desperately needed more knowledge about my situation, but everywhere I looked left me empty-handed. When I realized there was no group out there for people like me, I decided to take action and create the community I so desperately needed.
In 1999, I started FORCE – which is still, to this day, the only organization focused on supporting individuals with hereditary cancer. I expected my breast cancer diagnosis to be life-changing, but I never anticipated that it would be career-changing.
Four years after founding the organization, I walked away from my veterinary career to become FORCE’s full-time Executive Director. I never looked back.
Meeting a Growing Need
When I started FORCE, most of the attention was focused on two genes, BRCA1 and BRCA2.
Options for cancer prevention were primarily limited to just breast and ovarian cancers. Today, genetic testing can look for mutations in dozens of genes associated with hereditary cancers.
Over the years, FORCE has expanded to address the growing body of information on hereditary pancreatic and prostate cancers, which are related to BRCA and other mutations. It also provides support for people with genes linked to hereditary colorectal and endometrial cancer.
Thanks to major advances in research, genetic testing is now more precise and broader in scope. It has changed cancer screening, prevention and treatment, allowing medical care to be personalized based on an individual’s genetic test results.
Despite this, up to 90 percent of people with an inherited mutation have never had genetic testing.
That means, they may not realize the steps they can take to protect their health. During National Cancer Prevention Month, this is a message I can’t stress enough. As costs have lowered and technology has improved, genetic testing has become financially accessible to more people than ever. I encourage those who are concerned about cancer in their family to speak with an expert about genetic testing.
However, as was true in my case, you can still have an inherited gene mutation even if you don’t have a strong family history of cancer. Sometimes, even one cancer diagnosis in a family may be enough to raise suspicion for a mutation. Speaking with a genetics expert is the best way to determine if testing is right for you.
No One is Alone
Twenty-one years ago, I created a community based on my own need for information, resources and support. Today, it is my mission to ensure that the millions of men and women facing hereditary cancer have not only the community but the information and resources to help make informed decisions about testing, prevention, detection and treatment.
Because no one should have to face hereditary cancer alone.
About the Author:
Sue Friedman is the founder of FORCE, an organization dedicated to improving the lives of individuals and families affected by hereditary cancer. She is co-author of the book Confronting Hereditary Breast and Ovarian Cancer, which was published by Johns Hopkins Press, and is a frequently cited expert source on this topic.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.