A previvor is a survivor of a predisposition to cancer.
It takes courage to undergo genetic testing and uncover one’s risks for developing breast cancer. And it takes courage to process all of the complexities of cancer and still encourage others to take action. Joanne Kelly, a breast and ovarian cancer previvor, possesses the courage to go through all this and still maintain a positive outlook.
Joanne has lived with the possibility of developing cancer ever since her mother was diagnosed with breast cancer and her aunt was diagnosed with ovarian cancer.
Approximately five to 10 percent of breast cancers in the United States are linked to an inherited genetic mutation. Despite knowing her risk early on, it was not until years later that Joanne decided to proceed with genetic testing.
“When I was 20, I did not want to have the test done; I did not want to know,” says Joanne. “As I matured in my career as an oncology nurse, I wanted to know the risk.”
Following the advice of a coworker, Joanne spoke with Suzanne Mahon, founder of the Hereditary Cancer Program at Saint Louis University Cancer Center and a Komen St. Louis grant recipient. Once the two met for genetic counseling, Mahon coordinated the genetic testing, Joanne’s mother was tested first, and the testing revealed she carried the BRCA1 mutation. Subsequent test results determined Joanne also carried this genetic mutation.
“It is very, very important to have genetic counseling before you have genetic testing done. It’s a big piece of information for the rest of your family, for your children and your children’s children,” says Joanne. “To have someone help you process that information is important. I kind of knew my risk already with my family history. To know for sure was certainly overwhelming. It was also very empowering to know that I could hopefully prevent cancer.”
Devastated yet emboldened by the news of her risk of developing cancer, Joanne decided to take action. She opted for a double mastectomy in 2008 and a hysterectomy/oophorectomy in 2010.
“Having surgery has taken away the cloud over my head,” says Joanne. “It’s been four years since I’ve had the mastectomy. Prior to the surgery, I had the internal struggle of dealing with having cancer down the line.”
Through it all, Joanne credits her husband and children with keeping her going. With their support, she has been empowered to share her experience as she educates and empowers other women.
“What motivates me are the hundreds of women who will come after me,” says Joanne. “I want to be an example that knowledge is power. I can be a voice to encourage women to know their risk, to know that it’s going to be OK.”