Komen Missouri Community Partner: Saint Louis University’s Navigation to Manage and Prevent Hereditary Breast Cancer Program

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The Navigation to Manage and Prevent Hereditary Breast Cancer program at Saint Louis University provides individuals with the opportunity to discover their risk of breast cancer from a hereditary standpoint and take the necessary steps to proactively beat it.

A community grant from Susan G. Komen Missouri provides funding support for this program.

Once a person receives a positive result in genetic testing, their risk of breast cancer can be determined based on the specific mutation as well as the personal and family history of the individual. SLU is now able to test for over 21 genetic mutations that have proved to increase the individual’s risk of breast cancer.

Susan G. Komen Missouri has been incredibly generous over many, many years,” says Dr. Suzanne Mahon, program manager. “The funding is paying so that anybody in the region who needs genetic counseling and education, they get it, no questions asked. They are never billed for my service.”

This counseling and education explains the benefits and potential risks of genetic testing, and whether or not the individual’s family history indicates that genetic testing is the right call.

Suzanne’s role does not stop after testing is done and a genetic mutation is discovered. A navigation piece is in place as part of the program to ensure the patient is well-informed regarding all options.

She describes, “If someone tests positive, based on the gene they test positive for, I get them to all the services that they need to manage that risk…. We have never not been able to get someone to the next step.”

A positive genetic test also suggests that genetic testing should be done on the immediate family of that individual, if age appropriate. Suzanne explains, “If we can figure out if a family has a mutation …then we can help them make good choices about how they want to manage that so they have a little more control over the situation. It’s not like, ‘well I have to just sit around and wait for this bad thing to happen’.”

Suzanne recalled the story of a 36-year old who came in for genetic testing, as her mother had breast cancer twice. The decision was made to hold off on the genetic screening, and she instead had an MRI ordered, which eventually led to a positive biopsy result. The patient decided to do a bilateral mastectomy, and would check in every so often with Suzanne to let her know how she was doing. On one of those phone calls, Suzanne informed her that there was more testing available, so she came in and ended up with a positive result for a gene mutation. This would not even have been on her radar before the test. What’s more, her mother, sisters and brother are all now coming in for genetic testing. Suzanne states, “We don’t just forget these families. We really try to stay connected to them and give them state-of-the art [care] as it is available.”

Suzanne Mahon has been involved with the Navigation to Manage and Prevent Hereditary Breast Cancer program since its origin in 1999. The program has worked with over 2,500 families in that time. “I have the most fantastic job in the world,” she says. “I get to help people change the outcome.”

This is the 11th year of Komen Missouri funding for this program.

Susan G. Komen Missouri’s community grants help fund local breast cancer screening, breast health education and patient navigation and support services for those in our community who otherwise may not have access due to low income, lack of insurance or other barriers.

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