In 1996, Sue Friedman was a young veterinarian in South Florida who had a husband, a young child — and astonishing news. At just 33, she learned she had breast cancer.
The same year, Dr. Rebecca Sutphen started the clinical genetics program at Moffitt Cancer Center in Tampa, just as a test to detect gene mutations that raise the risk of breast and ovarian cancers was becoming widely available.
Before long, Sutphen was counseling women with these traits to seek information and support from a new group — founded by Sue Friedman.
Today, Facing Our Risk of Cancer Empowered (FORCE) runs the largest annual gathering of women affected by hereditary breast and ovarian cancer. The conference and the group's website are a repository of patient and professional knowledge that has been distilled into the newly published Confronting Hereditary Breast and Ovarian Cancer (Johns Hopkins Press).
Co-authored by Sutphen and Friedman with health writer and breast cancer survivor Kathy Steligo, the book is a clear, compassionate guide to the decisions women with a BRCA (BReast CAncer susceptibility gene) mutation face.
Do you get genetic testing? If your test is positive, do you have preventive surgery or drug therapy? What about fertility? How do you share potentially frightening information with your family?
The book also is a useful introduction to genetic counseling and testing in general. It emphasizes that even if you do inherit a genetic tendency toward cancer or another serious condition, it doesn't necessarily mean you will get it — or that there's nothing you can do about it.
Most breast and ovarian cancers are not hereditary. But all survivors face similar issues about treatment, reconstruction and recovery, topics that are thoroughly explored in the book.
Friedman and Sutphen met for the first time in 2004, when Friedman was invited to Moffitt. She was so impressed by Sutphen's vision that she decided to relocate her family and FORCE to Tampa to work with Moffitt, Florida's only National Cancer Institute-designated comprehensive care facility.
Today, Sutphen is chief medical officer for Informed Medical Decisions, a national network of board-certified genetic specialists providing counseling by telephone and the Web. And, like Friedman, she is now a breast cancer survivor.
The Times recently spoke with Sutphen from her St. Petersburg office, and with Friedman from her Tampa office about the book and their collaboration.
How did your experience with hereditary cancer and FORCE lead to this book?
Sue Friedman: A book was always part of the idea. The patient voices in the book are all people we met through FORCE. This is a very generous community of people who want to share what they're experiencing. Even with as much funding as there is for breast cancer research, our community doesn't always get the priority. "Mutation" has a stigma associated with it. We want to shine a light on it.
Rebecca Sutphen: Our goal for this book — it's a piece of what you need when you're grappling with cancer or cancer risk. Yes, the topic is scary, but information is empowering. And a book like this can be something you can pick up and go back to as you feel you can handle more information.
The book makes the point that many people don't know if they have a family history of cancer. How can that be?
S.F.: I didn't have a large family. We had family members who died in the Holocaust. So I didn't have a family history to know if there would be cancer riddled throughout.
R.S.: Also, it can be inherited from the father's side, not just the mother's. Since males are unlikely to get breast cancer, you won't have that evidence from your father's side if he is the one passing it down. One of the things you can do as a breast or ovarian cancer patient is investigate whether there's a genetic basis for your cancer. If so, you can be the one to unravel it for your family. That's something positive that can come out of your experience, and you can use it to protect your loved ones.
Sue, how did you know to get genetic testing after you had already had a mastectomy and reconstruction?
S.F.: Nine months after my surgery, I was at a boutique getting a bra fitting and I saw an article on hereditary cancer. It was the first time I ever heard of it. My health care providers never told me about it.
Two facts stopped me cold: It can come from the father's or the mother's side, and there is a link between breast and ovarian cancer. I knew my paternal grandmother had died young of what they called kidney cancer. That was back in the 1940s. It would have been very easy to mistake late stage ovarian cancer for kidney cancer.
Soon after, I felt a lump in my armpit. It was a recurrence of my cancer that should never have come back if I had been treated properly.
Rebecca, you are a physician who has helped women with breast cancer for years. What was it like for you to get your own diagnosis three years ago?
R.S.: It was surreal. You would think with all my head full of knowledge I would know everything and wouldn't need a group like FORCE for support. I was totally wrong. I was never so thankful that my best friend was Sue Friedman. I needed a guide, I needed treatment, I needed information, but I needed it in the context of a terrifying piece of news.
What's the biggest misconception about genetic testing and counseling?
S.F.: The best way to get information is not to just go out and get a test, but to find expert genetic counseling. One of the things we are firm about at FORCE is that if you're going to make decisions, make sure you have the right information. We've had people make surgical decisions based on test results that weren't properly interpreted.
R.S.: So many people don't know that genetic counselors are board-certified specialists, that genetic counseling is covered by your health plan, usually with no out-of-pocket costs. Ideally, every person should be able to say, "There might be really important information in my family history that might be useful to me, and prevention steps I could take. Talking to an expert to help me interpret that makes sense."
BRCA is not the only gene mutation that is linked with cancer. So what matters more to cancer risk — genetics or lifestyle?
R.S.: Genetics has been applied so far mostly to people who already have diseases or conditions. Unfortunately, we're only using a small amount of the information our genes potentially could reveal, not only about cancer, but about heart disease and many other conditions. Genetic counseling is already available to most people, and the cost of genetic testing is dropping. We hope that it's becoming routine that people can become more preventive and proactive instead of waiting until disease strikes.