By Rachel Belle
If you had the opportunity to take a simple blood test, that would let you know if you’ll get cancer later in life, would you take it?
Last year, when I went to my annual OBGYN appointment, my doctor asked me to fill out a questionnaire. Was there a history of breast or ovarian history in my family? YES. Am I Ashkenazi Jewish? Also, yes. My doctor recommended I take the BRCA test, that would tell me if I had a cancer causing gene that would elevate my risk of getting cancer to 80 percent. I had never heard of any of this before and was shocked to learn that I could find out now, at age 32, that I have this gene and will pretty much know that I will get cancer.
Jane Berkman was first diagnosed with ovarian cancer in 2004, and had a recurrence in 2007. Then she tested positive for the BRCA gene.
“I got tested because I thought, if I am positive, the chances of me getting breast cancer are so high that I definitely want to be proactive. I want to spare my kids from watching me go through chemo, because I watched my mother go through chemo.”
She opted to have a double mastectomy, and they actually found the beginning stages of breast cancer during the surgery.
I have yet to take the test because…I’m scared! Do I want to have this knowledge? Will I spend my days anxious, waiting to be diagnosed with cancer? I consulted Women’s Cancer Care of Seattle gynecological oncologist Kathryn McGonigle.
“There are psychological barriers. Patients fear what they don’t know and they’re not sure they want to know the truth. But honestly, knowledge is power and it gives you the ability to make decisions for yourself.”
If you have the gene, insurance companies will pay for preventive treatments that you might not otherwise qualify for if you didn’t know.
“There are treatments we can give patients that may reduce the risk of breast or ovarian cancer,” Dr. McGonigle says. “In fact, birth control pills have, on the average, about a 50 percent reduction in the risk of ovarian cancer. There are patients who have this cancer gene defect and we’ll ask them to do both breast MRI and mammograms, annually, starting at a young age. The thing that shows the greatest protection is actually risk reducing surgery. Patients who carry these gene defects may undergo prophylactic mastectomy and or removal of their tubes and ovaries.”
See why I’m scared? At 32, I don’t want to think about losing my breasts before I’ve been diagnosed with cancer.
Seattle restaurant owner, Susan Kauffman, tested negative for the gene. But she has had breast cancer twice. She says, at my age, she’s not sure she would have gotten tested.
“It’s a big philosophical decision. Having breast cancer twice has made me much more metaphysical and philosophical about life. Although I’m in remission, cancer is certainly staring at me. I’ve come to place where I go, ‘You know, it’s my life now and carpe diem, I could die of a heart attack tomorrow.’ I’m not going to live waiting to die. So I have to question, knowing that you have the BRCA gene, whether that would really impede your quality of life as you move forward. It’s a very hard decision. You have to be prepared with a game plan. To just know it, I think is kind of toxic. To know it and have a game plan and say ‘I’m going to have a radical mastectomy, take my ovaries and uterus out.’ I mean, women do it and they feel safer in life, and it’s a very personal decision. I just have a hard time living my life, knowing that.”
Dr. McGonigle says 75 percent of women with ovarian cancer come in at an advanced stage.
“It breaks my heart to see a patient who comes in and she says ‘Yeah, my mother had breast cancer when she was 30 and I’m Ashkenazi Jewish’ and now she’s got advanced cancer. And I’m like, ‘Oh my gosh, we could have figured this out earlier. I would have taken your ovaries out five or ten years ago.’ I don’t say that to the patient, but I may think it. I would love to just educate patients so they would find out about this ahead of time.”
Dr McGonigle takes Jane along to speak to synagogues, and educate women, which I think is completely necessary since most women I’ve spoke to have never heard of BRCA. Information is the key: at the start of this story I did not want to get the test. Now, I plan to have it done.
Jane Berkman recommends this website for information, and forums, about making the decision to take the test and dealing with it after.