Part One: Genetic Testing, Family History, and Doctor-Patient Trust
Breast cancer is a deeply personal experience but for many of those who are diagnosed, the medical service they receive is impersonal and confusing. This is especially true for Black womxn and womxn of color. Medmo is the proud sponsor of Keepin’ It Candid… About Breast Cancer,” an open dialogue hosted by Health In Her Hue that dove into the lesser-known but equally important aspects of breast cancer. Topics ranged from personal family histories, genetic testing, and intimacy after mastectomy. Here is Part One of the recap of the event.
Erika Stallings is an attorney and writer based in the New York/New Jersey area. Her work has been featured in The New York Times, The Washington Post, Oprah Magazine, and The Cut. In 2014, she underwent genetic counseling that revealed she carried the BRCA2 gene mutation which increased the lifetime risk of her developing breast cancer to 80%. She underwent a preventative mastectomy that same year which reduced her risk to less than 5%. Since her diagnosis, she has worked to raise awareness of hereditary breast cancer among Black women and has recently partnered with the Basser Center for BRCA to launch Black in BRCA, an educational initiative aimed at educating the Black community about BRCA mutations.
Dr. Ryland Gore is a board-certified surgeon specializing in breast surgical oncology. She received her medical degree from Morehouse School of Medicine in Atlanta, Georgia. Doctor Gore previously served on the board of directors at Every Woman Works, Inc., an Atlanta-based nonprofit organization whose mission is to empower women and help them transition from common setbacks. She has also been the chairwoman of the American Cancer Society’s Making Strides Against Breast Cancer campaign for the last 2 years.
Dr. Monique Gary is a board-certified, fellowship-trained breast cancer surgeon and Medical Director of the Grandview Health Cancer Program. Grandview is part of the Penn Cancer Network in Sellersville, Pennsylvania, where she also serves as Director of the breast cancer program. She is an Associate Professor at three medical schools within the United States. Her practice specializes in oncoplastic and hidden scar minimally invasive breast cancer surgery.
Genetic Testing and Family History
Erika’s experience with breast cancer begins with her mother, who was diagnosed with Stage 1 breast cancer for the first time in 1993. She was 28 years old at the time, which was also a few years before doctors would learn of the genetic mutations associated with breast cancer. Her mother underwent lumpectomy, chemotherapy, and radiation for treatment. She was in remission for 14 years until 2007 when she was diagnosed with triple-negative breast cancer, a type of cancer that is less responsive to chemotherapy. Her oncologist at the University of North Carolina at Chapel Hill noticed that this was her second breast cancer diagnosis under the age of 45 and recommended that she undergo genetic testing. After her mother tested positive for a BRCA mutation, Erika learned that she had a 50% chance of inheriting it as well. In 2014, Erika decided to get tested herself. Her oncologist at High-Risk Cancer Genetics Program at New York University went over Erika’s family history and informed Erika of her having the BRCA mutation three weeks later. Her team recommended that she undergo a preventative mastectomy due to how aggressive her mother’s breast cancer had been at the time. Erika expressed how fortunate she was that the person who did her genetic testing was an oncologist who provided her with a team in terms of the next steps. She met with a breast surgeon, a plastic surgeon, as well as a dermatologist, and an OB-GYN who specializes in treating cancer patients because BRCA mutations are also associated with melanomas and ovarian cancer. Erika spent the remainder of 2014 interviewing doctors and underwent her mastectomy that December.
In terms of selecting her doctors, Erika admitted that her surgery was similar to elective surgery and that she needed to have a good relationship with her surgeons, particularly the ones who would be monitoring her ongoing cancer risk. Her reconstructive surgery was especially personal and as such, she needed to ensure that she was comfortable with the surgeon performing the procedure.
From a physician’s standpoint, Dr. Gore encourages patients to have conversations regarding family history with their loved ones. She notices how many times patients will neglect to answer such questions on forms or paperwork, which requires her to ask them again in-person. Being in oncology, Dr. Gore and Dr. Gary are used to spending more than 10 or 15 minutes with patients and will specifically take the time to ask the questions. According to Dr. Gore, this allows patients to build trust and informs her of various types of family history involving cancer – something that physicians may take for granted. This information is what will allow Dr. Gore to decide whether or not to recommend genetic testing. Dr. Gary notes that in the Black community, there is a stigma associated with talking about family and that this is harmful since it leads to a lot of unknowns for future generations. As Dr. Gary states, “The two things that we should talk about the most are our money and our health.”
For Dr. Gary, the conversation begins with imaging. Her mother died of ovarian cancer at 29 and her grandmother had bilateral breast cancer as well. Dr. Gary didn’t know her mother’s cause of death until she herself was almost 29. Right before she was about to go into her fellowship as a breast surgeon, she went to get tested herself; “I can’t be the breast surgeon who hasn’t actually gone through genetic testing”. She recalls that the person who did her test provided very little patient care, relying on the fact that she was a doctor and would presumably require less information from him. She expressed wanting to be treated like any other patient and him refusing to do so, leaving her to figure things out for herself. Afterward, despite being told that her results would arrive in three weeks, Dr. Gary had to call back the testing center after not hearing any news for six. The technician had seemingly misplaced her results and relayed them curtly over the phone: she was negative. She noticed that there was a significant lapse in oversight regarding patients who currently did not have cancer but had a family history of it. Many patients who undergo genetic testing are unable to interpret the results or are at a loss for what steps to take after testing positive or negative for certain markers. COVID-19 has expanded the field of genetic testing to allow physicians to send tests directly to patients without them having to enter a lab or office. Accessibility has increased but it ultimately depends on whether or not doctors are able to provide patients with understandable and accessible access to resources.
For patients who are unsure of their family medical history, Dr. Gary recommends going directly to genetic counselors. Genetic counselors are people who are trained to provide personalized help patients may need as they make decisions about their genetic health. They are rare outside of academic settings, which is why many surgeons have begun training as genetic counselors. Still, this is only an effective alternative for those patients who are able to provide some degree of knowledge of their familial or past medical history. Dr. Gary notes that insurance companies are known to make the process more difficult for patients who may not have access to medical records and history, such as adoptees or those with donor parents.
To learn more about breast cancer and treatment, click here.
For more information on Medmo and medical imaging services, click here.