For Men’s Health Awareness Month, Check Your Genes and Reach Out for Support. I Did, and It Has Made a Huge Difference in My Family’s and My Life.
November is Men’s Health Awareness Month, and I hope that sharing my BRCA journey will help others, especially men. BRCA, known as the “breast cancer gene,” became a household term for our family in 2018 when I completed a “direct to consumer” genetic test — largely to learn about my heritage — and was surprised to learn that I carry the BRCA2 gene mutation. This discovery was life-changing, as it means I have a significantly increased risk of prostate, pancreatic, breast, and skin cancer— even though BRCA is most commonly associated with breast and ovarian cancer in women.
I immediately started learning everything I could about the BRCA mutation, and Sharsheret was an extremely valuable and supportive resource. Sharsheret means “chain” in Hebrew, and represents the strong, nurturing connections that support Jewish families affected by BRCA and other cancer-related genetic mutations at every stage of the process. Sharsheret improves the lives of families living with or at increased genetic risk for cancer through personalized support, educational outreach, and other crucial services. I am honored to be a Sharsheret volunteer and to be focusing on expanding its reach to men impacted by BRCA.
While roughly 1 of every 400 people have a BRCA mutation, that number increases ten-fold, to 1 in 40, for the Ashkenazi Jewish population. And roughly 50% of those with the mutation are men. For women with a BRCA2 mutation, lifetime risk of breast cancer increases from 12.5% to roughly 50% (with some studies putting the risk as high as 85%), while the ovarian cancer risk jumps from 1.3% to as high as 20%. I immediately became concerned about what this would mean for my daughters if they tested positive, and I felt a tremendous sense of responsibility to help them deal with whatever challenges they may face because of inheriting my genetic mutation.
BRCA2’s health implications for men include a 32% chance of developing prostate cancer, compared to 12% for the general population. Men with BRCA mutations often develop an aggressive form of prostate cancer, and are often diagnosed at a younger age. For men with the mutation, the lifetime risk of breast cancer is as high as 7%, compared to .1 % of the non-BRCA population, making me 70 times more likely than the average man to get it – and requiring me to enter a world of breast self-exams and “manograms.” For both men and women, the odds of getting pancreatic cancer jump from 1.5% to as high as 10%, and studies have linked the mutation to an increased risk of malignant melanoma, including in the eyes.
Clearly, a BRCA mutation is something no parent wants to pass on to their son or daughter, but that’s exactly what happened in our family. After more than a year of discussion with my wife (a breast cancer survivor who does not have the BRCA mutation) and our doctors, we decided to tell our three adult children of my situation. The Sharsheret publication “How Do I Tell My Children About My Cancer Gene Mutation?” made this difficult conversation easier.
All three of our children (two girls and a boy) decided to get tested, and unfortunately, all three tested positive for the BRCA2 mutation. So much for 50/50 odds. Now I not only focus on my own health, but I also do everything in my power to help our children (and even our future grandchildren) stay healthy.
As unfortunate this may sound, a BRCA mutation is neither a death sentence nor a guarantee that any of us will get cancer. As we all work together to process our “new normal,” our family has become closer since learning of our genetic status. At age 58, I’ve scaled back my work as an attorney so I can devote more attention to my health, my family’s health, and the world of genetic mutations in general, and BRCA in particular.
My wife, a mortgage banker who is in her third year post-breast cancer, sets a great example by eating right, exercising, and reducing her stress levels with yoga, pickle-ball, and Mah-Jongg. Our 29-year-old daughter responded to her diagnosis by focusing on her health and choosing to freeze her eggs, to expand her options to have children and to make it possible to screen for BRCA mutations before implanting fertilized eggs when she’s ready. Our son and younger daughter are taking the news in stride and planning for a life that just happens to include the BRCA mutation. In this way, our family is doing all we can to beat BRCA and to prevent it from being passed on to future generations.
I hope cancer doesn’t find me, but if it does, I want to be as prepared as possible, by detecting it early and being in fighting shape, so I’ll be much more likely to beat it. I have also enrolled in several BRCA-related studies, advocated for more education, testing and research regarding genetic cancer risks, and am devoting time and money to BRCA-related non-profits, including Sharsheret. I am particularly impressed with Sharsheret’s wide range of resources and programs, including an educational booklet series (with titles such as “Your Jewish Genes,” “Facing Breast Cancer,” and “Caring for Loved Ones Living with Advanced Cancer”), as well as Shabbat Dinners, webinars, and financial subsidies.
Even though I am just beginning this journey, I have already met hundreds of dedicated people whose work I admire and whose goals I share. As a man with a BRCA mutation, I have been welcomed not only into the “BRCA Brotherhood,” but also into many support groups (of mostly women), which I have found to be incredibly helpful and inspirational. I didn’t go looking for BRCA, but since it found me, I’m going to do all I can to meet it head-on, and to help others – through education, advocacy, research, and in every other way I can.
If you’re reading this and wondering if a risk of hereditary cancer might run in your family, now may be the right time for you to make a plan to consider genetic testing and talk to a genetic counselor. Knowledge is power, and it just might save your life or the life of someone you love.
Brad Hertz is an attorney, husband, father, and Sharsheret volunteer who lives in Los Angeles.