Hereditary Cancer Project at UW Medicine Brotman Baty Institute for Precision Medicine
There is an effort underway at University of Washington Medicine to help save the lives of as many as 2.5 million people who may have hereditary cancer and don’t know it. The challenge is reaching those people and letting them know.
The key is family members talking to each other so they can get early treatment and even prevent the cancer altogether. “It just can be life changing and I really believe it can put an end to these hereditary cancers,” said participant Debby Doman of Edmonds.
Doman found out she had a rare form of hereditary cancer and is now part of the project at the Brotman Baty Institute for Precision Medicine at UW Medicine to reach out to others with hereditary cancer and then let their family members know.
“The common factor is there is some type of family communication that goes on about that cancer,” said Dr. Brian Shirts who is leading the project. “Either somebody who has it tells their siblings and their parents and their kids about it and so those people can get tested before they get cancer and prevent it.”
He continued, “Or somebody finds out a family history of cancer and goes to their doctor and says ‘Hey, I have three women in my family who all had breast cancer in their 40s, I should get tested to see if have this or something I should look for?’”
Dr. Shirts figures 200,000 know they have hereditary cancer and that about 2.5 million people, mostly relatives, need to know about it so they can get screened and take action. “Knowledge is empowering,” said Doman.
The project, which BBI launched in August 2019, helps families with high rates of hereditary cancers talk to each other about their shared medical histories. Those family members are then able to work with their own physicians to develop personalized cancer prevention plans. Their mutations have been associated with breast, ovarian, colon, and endometrial cancers.
For example, BRCA1, one of the most well-known of these cancer-causing genes, gives instructions for the body to defend itself against cancer. When a mutation distorts these instructions, the risk of cancer increases. Different mutations carry unique sets of risks; one mutation might cause higher rates of breast cancer, pancreatic cancer, or ovarian cancer at an early age.
“There is really no reason why somebody who has a mutation of these genes should get cancer,” said Dr. Shirts. “And usually when they do, they catch them in their 30s, 40s or 50s. So, quite young.”
Doman said the key is talking to your extended family members about the potential they could have a genetic cancer. “Other women have a difficult time in seeing the importance of doing what Dr Shirts is which is trying to connect people with the same variant so we can go back and find a common ancestor and then move forward.”
She said, “I have one sister who tested positive. She has three children and one of her sons tested positive. I have three children and I have a son who tested positive. They can make the choice to have preventative screening done that are associated with the cancer that is associated with this gene mutation. They can choose proactive surgery.”
“It has a lifesaving potential. Oh absolutely,” she said.
The institute has set up a website to help those who believe they may be connected to this hereditary cancer situation at www.ConnectMyVariant.com.
