Last week, Angelina Jolie disclosed that she had a preventive double mastectomy after learning that she carries a gene that sharply increases her risk of developing breast and ovarian cancer. I absolutely applaud her decision to share her experience, as I am a strong believer in the power of telling our stories, both for others and for ourselves.
And then I tried to stop thinking about it, or anything else related to the C word or the inevitable D word. But I couldn’t. In the back of my mind, I wondered if I am at an increased risk for breast or ovarian cancer as I am both of Ashkenazi Jewish descent, and my paternal aunt died of breast cancer when she was just 45 years old. I finally decided I needed to learn more. I called my aunt, Dr. Elizabeth Naumburg. She’s a Professor of Family Medicine and an Associate Dean for Advising at the University of Rochester Medical School, and she sees patients just like me on a regular basis–women who might have questions about their own risk for breast cancer, and what they should do about it.
I envisioned a brief conversation in which I would ask a few questions, she would give me some clear answers and guidelines, and I would know exactly how to proceed.
I should have known that cancer is a lot messier than that. Although the scientific community is making incredible progress in the areas of cancer diagnostics and treatment, there is still much we don’t know.
Here’s what I did learn:
1. The BRCA1 and BRCA2 genes that have been associated with increased risks of breast and ovarian cancer only account for 10-15% of breast cancers. Most people who get these types of cancer do not have a genetic predisposition for it.
2. Genetic screening is only recommended for women who meet very specific guidelines; in the case of Ashkenazi Jews, you need to have one first degree relative who has had breast or ovarian cancer OR two second degree relatives with breast or ovarian cancer on the same side of the family.
3. Although there is some evidence for the efficacy of preventive mastectomies, it’s never clear how effective it will be for any one woman. As an Ashkenazi Jew who lost a sister to breast cancer, Dr. Naumburg is eligible for the genetic screening. However, she has chosen not to have it, as she’s not sure what choices she would make based on the outcome.
4. The non-genetic risk factors for breast cancer are mostly things we have little or no control over, such as your age at your first menstrual cycle, delivering your first baby over the age of 30, or late menopause (although being overweight and not exercising may also put you at increased risk).
5. It’s not clear how much breast self-exams can help. Yes, you might find a lump earlier, but it’s not necessarily the kind of lump that will turn into cancer.
6. Mammograms are recommended approximately every other year for women over the age of 40. Women who are at high risk for breast cancer may be advised to have them more often.
8. Not surprisingly, there is a lot of variability in the quality of the information available on the Internet. Dr. Naumburg recommends the The National Cancer Institute’s (NCI) and the Center for Disease Control’s (CDC) Cancer sites. You can complete the NCI’s Breast Cancer Risk Assessment Tool and learn what your risk is.
What I really learned from this conversation is that cancer and everything that goes along with it–predictions, prevention, screening, and treatment–is complicated and confusing and there really is no clear answer. Cancer is scary, and we all know someone who has been touched by it, so it’s tempting to seek clear answers and specific guidance as to how to avoid it if possible. Unfortunately, it’s not that easy. It seems to me that the best thing we can do for ourselves and our children is to learn our family history and find a doctor who will listen to our concerns and work with us to figure out what makes the most sense of each of us, based on our own unique stories.