On a recent flight, I sat next to a passenger* who asked what I did for a living. After telling her I am a genetic counselor who specializes in hereditary cancers, the conversation turned into a curbside consult about her family health history. It ended with a big surprise for her. She learned that she might be at high risk of developing breast cancer over her lifetime. While I have this conversation many times a week, the one on the plane was unexpected and especially memorable.
During the course of the flight, my travel companion shared many details that I helped her piece together. She was in her early 40s, had a paternal family history of breast cancer, a sister with early onset breast cancer and was of Ashkenazi Jewish descent. Despite this high-risk family history, no healthcare provider had ever mentioned the possibility of an inherited risk nor had they suggested she start surveillance, such as screening mammograms, at a younger age. She didn’t think testing had been done on her relatives, either. Seeing how open she was to learning more, I shared that she could have a high potential for developing ovarian cancer. Genetic testing may help her define these cancer risks. If an inherited risk factor was found, as a result, she might want to consider having her ovaries surgically removed in the coming year. Not surprisingly, such an important consideration caught her off guard.
Before we parted, I gave her my business card and wrote “FindaGeneticCounselor.com” on the back of it so that her relatives could also find a genetic counselor close to home to explore a potential inherited risk factor. A day later, I heard from my travel companion.
She had spoken with her relatives and learned that one cousin who’d had breast cancer was tested for the common two breast cancer genes, BRCA1 and BRCA2. The woman I’d met on the plane hadn’t been aware of this because her relative was not referred to a genetic counselor and didn’t understand that her results were important not only for herself, but also to blood relatives. We discussed how there are other genes that increase the chance for breast and ovarian cancer and additional testing may be useful for her family to consider based on her family history.
After having time to consider our conversation, my plane-mate was quite grateful for the fortuitous meeting and the ability to investigate her cancer risks further. She decided to encourage her relatives to meet with a genetic counselor for a full risk assessment and consideration of additional genetic testing. After our conversation, she understood that testing her relative with early onset breast cancer would not only help her relative, but it would also provide important information to my plane-mate regarding her lifetime chances of cancer. It was possible that she would learn she was not at increased risk and might not need to consider surgery. It created an important conversation among her family members and they planned to share more information in the coming weeks.
Our unplanned meeting on the plane reminded me that an important part of my job is helping people understand the meaning of the test results for themselves, as well as for relatives. While I’m used to thinking about these topics, it may be new for someone else. As I watched her react to the information and saw the comprehension register in her eyes, I put on my “counselor hat.” Learning about the presence of a “cancer” gene can be quite nerve wracking in the early days of the news.
The “counseling” aspect of genetic counseling for cancer
When I share sometimes surprising or life-changing news with my clients, I’m always ready to help them process and address it in the best way possible medically, as well as emotionally. As a genetic counselor, I can help you understand:
- While the news might be scary, being in control of the decisions rather than feeling that a cancer has the control can help you take proactive steps to protect your health and share the information with relatives.
- When there is a strong family history of cancer and the test results don’t identify a risk factor, it doesn’t mean there’s no inherited risk. Sometimes the test doesn’t answer the question. Screening and cancer risks are still based on the family history. We just don’t have a test to tell relatives not to worry.
- Personal medical histories and family histories can change over time. Sometimes, these changes can make a pattern of health problems in the family easier to recognize. It may be useful to contact your genetic counselor periodically to determine if any of the changes affect the risk assessment or if additional genetic testing should be considered, as the testing options will change over time.
- Learning about a cancer gene mutation is important, but remember that there’s nothing different about you. The gene has been with you since conception and may not have caused a problem. It identifies an increased chance of developing cancer over a lifetime, but often this is presumed based on family history. In some cases, finding a mutation (inherited risk factor) can be meaningful because it might explain a cancer diagnosis or family history of cancer.
- Talking with relatives about health problems may seem awkward at first, but sharing genetic test results can be really useful and possibly lifesaving. As a genetic counselor, I understand the different dynamics in family relationships. We spend time discussing with our clients options for sharing important news with family members, such as a letter, which we can provide.
Genetic counselors are valuable resources to help review patterns in the family history and determine how the information may affect your health risks and medical decisions, such as genetic testing. Genetic counselors can also help you sort through those emotions that arise and address them in a way that feels right to you. I very much appreciated meeting the passenger on the plane. While she learned something from me that evening, in return she taught me so much and reminded me why I love my job: because I’m able to help people both physically and emotionally.
*Some identifying details have been changed to protect the privacy of this individual.
Joy Larsen Haidle, MS, LGC, is a past-president of the National Society of Genetic Counselors and a genetic counselor at Humphrey Cancer Center in Robbinsdale, Minn.