What are some of the factors that might make a patient higher risk for a hereditary risk for kidney cancer?
It’s important for people to understand that most cancers are not caused by a hereditary predisposition to cancer. In fact, only 5-10% of all cancer is explained by a hereditary cancer predisposition syndrome.
In families with a hereditary risk for kidney cancer, for example, kidney cancer is more likely to be diagnosed at younger than expected ages, especially before age 47. There may be multiple family members on the same side of the family who have been diagnosed with kidney cancer or we may see rare types of kidney cancer such as oncocytomas or chromophobe kidney cancer. Some people with a hereditary predisposition to kidney cancer may develop multiple kidney tumors or multiple types of cancers. There are also some rare non-cancerous tumors, including multiple angiomyolipomas of the kidney, that can suggest a person has a hereditary predisposition.
What should people do if they are concerned that there could be a hereditary predisposition to tumors or cancer in their family?
The best thing patients can do is discuss that concern, and information about their personal and family history, with their provider. Their provider can then either review available testing options with them directly or refer them to a genetic counselor or other healthcare provider with expertise in genetics. Healthcare providers with expertise in genetics typically spend 30-60 minutes with patients reviewing their personal and family history to provide a risk assessment for the chance of a hereditary cancer predisposition syndrome. They may then discuss genetic testing options and how the results of genetic testing may be used to guide the person’s cancer treatment (if applicable), their future cancer screenings, and the medical management of their family members.
One of the biggest barriers to being able to evaluate for the risk that a person or a family has a hereditary predisposition to cancer is not having information about a person or a relative’s cancer or tumor diagnosis. One of the best things patients can do if they’re preparing to meet with a provider to discuss their risk for a hereditary predisposition is collect as much information as possible in advance of their visit. This can include things like how old their relatives were at the time of their diagnosis and the exact pathology of their tumors.
What inspires you to work as a genetic counselor?
I became a genetic counselor because I wanted to be able to help people during vulnerable moments to feel empowered to take charge of their healthcare. I personally have a strong family history of cancer and have seen firsthand the fear and confusion that can take hold when a cancer diagnosis is made. As a genetic counselor working in hereditary cancer genetics, it is my privilege to counsel patients who have a personal and/or family history of cancer. It’s my goal to ensure my patients have a complete understanding of their risks for a hereditary cancer syndrome and feel empowered to make decisions about genetic testing and cancer screening and prevention that meet their personal healthcare goals.