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Robin Karlin and Cole Land are FORCE Pittsburgh, PA Peer Support Group Leaders and graduates of FRAT (FORCE Research Advocacy Training) program. Robin serves on the ABOUT Steering Committee and assists with the Team FORCE program. Both previvors, they credit the local FORCE support group for not only providing the resources they needed to make informed decisions, but also provided them with the emotional support they needed to heal. Cole and Robin work together to raise awareness, provide support and fundraise in their community so that they can be there for others in need. We are extremely grateful to Robin and Cole for their volunteer work and are glad to have them as members of VolunteerFORCE. If you are interested in becoming a FORCE volunteer like Cole and Robin, please fill out our volunteer survey today!
I have a very 21st century tale to tell. A random turn of events led me to the potentially lifesaving information that I have a BRCA1 mutation. My son, at the age of 22, decided to order a genetic test from 23andme which offers its testing services direct to consumers on the internet. He enjoys being on the cutting edge of science, social networks, and computers. He happened to be visiting us when he got the results in his email and so he shared them with us. 23andme tests for the 3 Jewish founder BRCA mutations and we were very shocked to discover that he has one of them. Shocked because neither my husband nor I thought we had a family history of breast, ovarian, or prostate cancer.
I actually knew very little about BRCA mutations. I ignored the information for about 5 months until my yearly gynecological appointment when my doctor made clear the gravity of this situation. We consulted a genetic counselor in Pittsburgh and my insurance was willing to pay for my test. In Jan 2011 I got the unexpected result that I was the parent who passed on the mutation to our son. My mother then tested and was negative. Further research into my family history did uncover one 1st cousin on my dad’s maternal side who died young from ovarian cancer – and the fact that there would not be much family history because there were very few women in that branch of my family. My paternal grandmother died at the age of 55. I was always told she died of a heart condition. I will never feel certain about the cause of her death as my dad also thought she had cancer.
For me the completely unexpected discovery that I am a previvor (a word I had never heard before) and would have to decide whether I wanted to reduce my cancer risk by undertaking major surgeries was overwhelming and terrifying. No one from my dearest family to my oldest friends could empathize with how intense my fear was. At that time my son wrote these words which I can only now appreciate:
Don't worry mum, you have my love and support all the way. I don't belittle the seriousness of the statistics at all, and I don't question your judgment. It's just that I ... take a very existential outlook on my life. I'll live until I don't anymore, after which, I won't. Call it fatalistic, but it makes me happier. Some things are under my control, some aren't, but I won't worry too much about the ones that are not.
Well anyways I’m not questioning your judgment about surgery or any other reaction to it, except the never-ending worry and sadness. Because no matter what, that's not worth it.
The excellent local genetic counselor here in Pittsburgh referred me to the FORCE website where I found the latest information on hereditary breast and ovarian cancer (HBOC) and a welcoming and supportive community which helped me get through the hard decisions ahead of me. When I walked into my first FORCE meeting I was shaken and tearful and so very grateful to be in a room full of women who understood what I was going through. I learned that knowledge is power and that risk reduction was within my control. It is now over 4 years since I found out that I have a deleterious BRCA1 mutation and 2 years since the last of 5 surgeries, an oophorectomy followed by prophylactic mastectomies and reconstruction plagued by complications. I know I made the right decisions for me.
Because I want to give back to the community which helped me I have become a co-coordinator of the Pittsburgh FORCE group. I have also attended three of FORCE’s conferences, participated in FRAT, a program FORCE created to train lay people to be research advocates for the HBOC community and, more recently, volunteered to help with Team FORCE. Following my FRAT training I have joined the ABOUT Network Steering Committee and I have also joined a local research advocacy group (BCRAN) associated with the Magee Women’s Research Institute.
In my family, breast cancer is like puberty. If you are a woman, you wait for it, prepare for it, wondering when—not if—breast cancer will strike. I was thirteen years old when my mother was diagnosed with ductal carcinoma in situ—she was 38—but by then, I had already seen her sister undergo a lumpectomy, and I was well aware that my grandmother had survived breast cancer, too. So I wasn’t surprised when it happened to my mom, just like I assumed that someday I would develop it myself.
Ovarian cancer, on the other hand, we hadn’t planned for. It came quietly, unannounced. My mother began to feel bloated, her abdomen swelled, and three months later when the doctor removed her ovaries he also excised a tumor the size of a grapefruit.
“You’ll be here in five years,” the doctor told her. “I can’t tell you how you’ll be, but you’ll be here.”
Almost exactly five years later—five years of constant chemotherapy that had, in year five, induced remission—the cancer exploded, aggressively, violently. One year later, my mother died, just 18 days shy of her 49th birthday.
“I always said I wouldn’t die of breast cancer,” she told me, gazing out the window on an afternoon some months before her death. “I should have said I wouldn’t die of cancer. Period.”
My mom was never tested for the genetic mutation that predisposes my family to cancer—there was talk of testing at the end of her life, but for some reason, she didn’t pursue it. Nevertheless, there was always this question: what if? What if had she known that hereditary breast cancer—and we all assumed that our family’s predilection for breast cancer was genetic even if our hypothesis hadn’t been proven—put her at greater risk for ovarian cancer? What if she’d had her ovaries removed right after her first diagnosis, four years before the ovarian malignancy appeared? In short, if Mom had known then what I know now, would she still be alive today?
What I know now: my grandmother’s mother died of breast cancer when she was in her early fifties; my grandmother’s sister died of breast cancer at the age of 35; my grandmother was diagnosed with breast cancer the year I was born, had a mastectomy, and is still alive today; of my grandmother’s five daughters, four developed breast cancer, two in their late thirties, one of whom was my mom, and two right around age 50. Of these, the two who developed cancer earlier in life have since died and the other two have undergone bilateral mastectomies with reconstruction. My grandmother’s one daughter who hasn’t developed breast cancer is also the only daughter who has tested negative for a BRCA mutation.
Shortly after Mom died, I scheduled a consultation at a local high risk breast and ovarian cancer clinic. I was 24 years old. I was counseled to pursue high risk screening—annual mammograms and breast MRIs starting at age 25, pelvic and trans-vaginal ultrasounds, and a blood test to measure my CA 125, a “tumor marker” or protein whose elevation is associated with the growth of ovarian cancer—and I did, but I wasn’t quite ready to be tested. Four years later, at the prompting of a new gynecologist who found my family history of breast and ovarian cancer concerning, I gave a blood sample right then and there. A week or two later I received the results. I had tested positive for a deleterious BRCA2 mutation as well as a BRCA1 mutation of uncertain significance, the same genetic profile as Mom’s oldest sister who developed breast cancer—twice—around age 50. The takeaway message from my first encounter with a surgical oncologist post-testing was this: I should have my breasts removed as soon as I was ready; the ovaries could wait another decade. She handed me a folder filled with paperwork—all information on hereditary cancer—and then she handed me a business card for FORCE.
I signed up for the national newsletter that day. It would take me another two years, my first FORCE conference, and a year of attending local support group meetings to be ready to make that decision.
In September 2013, I underwent a prophylactic bilateral mastectomy, which according to statistics drops my lifetime risk of developing breast cancer from between 55 - 85% with a BRCA mutation down to a mere 5 - 10%. (Risk cannot be eliminated because even the most experienced surgeon cannot remove all breast tissue.) And I have another few years before I consider that next, possibly more harrowing, step: the removal of my ovaries and fallopian tubes followed by surgically induced menopause.
While these options are by no means ideal, I am grateful to have them, and I’m grateful for the knowledge that puts me in a position to choose prevention over the alternative: cancer.
I am grateful, too, for the many men and women who have supported me throughout this journey—my family, physicians, friends and FORCE. After all, it was through members of my local FORCE group that I found not only fantastic surgeons but also the emotional support so critical to the decision-making process and to healing. I completed FORCE’s Research Advocacy Training (FRAT) program in 2013, and I joined as co-coordinator of the Pittsburgh outreach group in 2014, just a few months after my surgery. My own experience is testament to the power of knowledge, to the power of community, and to the power of FORCE, and I volunteer to help make sure those same resources are available to all.