The Swedish Hereditary Cancer Clinic is comprised of four licensed and certified genetic counselors, gene detectives who help patients solve the mystery of why cancer might run in their family.
Swedish volunteer Mackenzie Coston spent some time getting to know one of our Swedish Genetic Counselors, Brianna Nelson:
Mackenzie Coston (MC): What exactly is the Swedish Hereditary Cancer Clinic, and what do genetic counselors do?
Brianna Nelson (BN): The SHCC is a clinic within SCI that offers genetic testing to cancer patients and their family members. The goal of genetic counseling and testing is to help individuals and families understand their future risks for cancer.
MC: Should all people with cancer visit a genetic counselor?
BN: No, not everyone. Most cancers are random or environmental, and unrelated to a specific inherited cause. Generally speaking, 5-10% of cancers can be related to a hereditary cause - namely, an inherited mutation in a cancer-preventative gene. Perhaps the most notorious of these genes are the BRCA genes which were made famous when Angelina Jolie shared her choice to have a preventative double mastectomy (removal of her breasts) and her ovaries removed due to the mutation.
MC: How do I know if I should be seeing a genetic counselor?
BN: There are a few clues that the cancers in a family are due to a hereditary cause. While certainly not exhaustive, here's a helpful list:
- A personal or family history of breast, uterine, or colon cancer under the age of 50
- A personal or family history of pancreatic, ovarian, male breast cancer, or metastatic prostate cancer (prostate cancer that has spread to other parts of the body) at any age.
- A personal or family history of breast cancer in both breasts
- Multiple people in the family with the same kind of cancer
- A personal or family history of over 10 pre-cancerous colon polyps (adenomas) or rare tumors like pheochromocytoma, paragangliomas, or adrenocortical carcinoma
MC: What are some examples of hereditary cancers?
BN: As mentioned, BRCA is perhaps the most famous hereditary cancer syndrome and is associated with a very high risk for breast cancer and ovarian cancer in women. The choice to pursue double mastectomy is a personal one. Some BRCA positive women will instead opt for more intensive breast cancer screening.
A lesser known syndrome is called Lynch Syndrome, which is associated with very high risks for colon cancer, which can show up much earlier in life. Women with a BRCA mutation are strongly encouraged to have their ovaries removed preventatively after they are done having children. Women with Lynch syndrome also have a high risk for uterine and ovarian cancer. If you have Lynch syndrome, you need to start having colonoscopies in your 20s instead of your 40s or 50s. You also need to have screening every 1-2 years instead of every 10 years.
Finding out you have a BRCA mutation or Lynch syndrome is a big thing to learn about yourself. But those results are actionable, and can significantly alter your medical care and help prevent cancer or detect it an early age.
MC: What type of information will genetic counseling provide me with?
BN: We explain what it would mean to find a gene mutation – what your cancers risks are, what surveillance or preventative surgery to consider, and who else in the family should be alerted. For those who test negative, we discuss your cancer risks based on other personal or family risk factors. Some people need more screening based on the family history alone. Of course, not everyone is emotionally or psychologically ready to learn about their cancer risks. Speaking with a genetic counselor can help align your goals and help you use your results in a personalized and meaningful way.
MC: How much does genetic testing cost?
BN: Testing used to be very expensive but that cost has dropped in recent years. Most people will not pay anything out of pocket if they meet their insurer’s criteria for testing. Those who don’t meet criteria for testing may choose to pay out of pocket, which is usually $250.
MC: Will genetic results change my treatment?
BN: Sometimes. Women with breast cancer who learn they have a BRCA mutation, have a much higher risk to get breast cancer again. They may chose a different kind of surgery based on that result. Some cancers, like metastatic breast cancer, ovarian cancer, pancreatic cancer, may respond better to certain chemotherapies if you have a BRCA or other gene mutation. We work in cooperation with primary care providers, surgeons, oncologist, and other specialists to ensure your genetic testing results are properly integrated into your medical care.
MC: What motivates you as a genetic counselor?
BN: It’s a privilege to work in cancer prevention, but what I enjoy most is learning about the families that make up our community. Families are complicated! Discovering what makes each patient and each family unique can be heartwarming, inspiring, insightful, frustrating, or even tragic. We are complex beings.
If you have interest in speaking with an SCI genetic counselor, ask your doctor or oncologist. Self-referrals are accepted, depending on insurance type. To schedule an appointment, call 206-215-4377.
