The last thing I expected to find when I returned home after a summer vacation celebrating my 50th birthday was a letter from my gynecologist saying the routine mammogram I had before I left found suspicious-looking calcifications in my right breast and that I should see a surgeon right away. Being an optimistic person, I was sure the calcifications were benign. But when the biopsy showed invasive ductal carcinoma that had spread to nine lymph nodes, I was terrified.
I started meeting with different oncologists to get their opinions on my best course of treatment. Several pulled out pads and pencils to calculate my odds of survival and said my 5-year overall survival rate was about 50%. One oncologist was so glib in her assessment of my chances for survival I felt doomed.
Surviving Cancer
The year was 1991, a time when intensive chemotherapy with autologous bone marrow transplantation was considered a promising new approach in the treatment of breast cancer, and many of the oncologists I consulted recommended the experimental procedure as part of a clinical trial. I read about the potential long-term health risks of the treatment, including heart disease from the high-dose chemotherapy and even death, and I was devastated.
Finally, I found an oncologist who assured me I was young enough to withstand the aggressive therapy and even gave me the names of several patients who had successfully undergone the procedure. After talking with them, I gathered up my courage and agreed to the transplant. I wanted to do everything I could to live.
I had a lumpectomy, followed by four rounds of high-dose CAF chemotherapy (cyclophosphamide, doxorubicin, and fluorouracil) and then the transplant. After the transplant, I had several rounds of radiation and was prescribed tamoxifen for 5 years.
The therapy was successful, and 23 years later I remain cancer-free. Although I have some late effects from the chemotherapy, including an enlarged heart and atrial fibrillation, I’m able to pursue an active lifestyle and I’m grateful to be alive.
Changing the Course of My Life
Twenty-three years ago, the words “breast cancer” were spoken in hushed tones and rarely in public, and stigma and fear surrounding the disease were profound. After my experience with breast cancer, I was determined to help other women going through treatment and survivorship.
An early childhood teacher by profession, I changed the focus of my life after my diagnosis. I became an activist with the National Breast Cancer Coalition, lobbying Congress for more research funding. I also launched the Great Neck Breast Cancer Coalition in my community on Long Island, New York, to raise awareness of the disease, encourage funding for research, and promote healthier lifestyles. In a circuitous way, having breast cancer also led me to a career in filmmaking.
When I was diagnosed with breast cancer I was fortunate to have good health insurance and the luxury of getting multiple opinions from leading oncologists to ensure I would receive the highest-quality medical care and the best shot at survival. A young woman I met at the hospital wasn’t so lucky. Because she didn’t have health insurance and couldn’t afford a mammogram, her breast cancer diagnosis had been delayed. By the time the cancer was discovered, it had metastasized, and she later died from her illness.
That experience led me to write a screenplay titled A Wake-up Call, which describes the experiences of two women in the aftermath of breast cancer and the inequity of the health care they receive. A movie is currently in development.
Making a Difference
Of course, I would have preferred never to have had cancer, but the disease has taught me about the fragility of life and the importance of giving back. Since the formation of the Great Neck Breast Cancer Coalition more than 2 decades ago, many women in the community have learned about screening mammograms, the importance of diet and exercise, promising new therapies, and the avoidance of potential environmental toxins to reduce the risk of the disease.
Although great strides have been made in increasing survival rates in breast cancer, more needs to be done. I remain committed to advocating for greater breast cancer awareness, increased research funding, and improving access to quality heath care and patient navigation, to assist medically underserved patients attempting to navigate their way through the complex medical maze until a cure is found. ■
Barbara Masry is an activist, screenwriter, and film producer living in Great Neck, New York.
