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Shannon always knew that cancer ran in her family, but was it bad luck or hereditary? What were her chances of getting it too? Before meeting with a genetics counselor at Huntsman Cancer Institute's Family Cancer Assessment Center, she didn't know.
All Shannon knew was that her great grandmother died of ovarian cancer and that her grandfather died of pancreatic cancer. After her aunt Laura was diagnosed with ovarian cancer in her early 40s, she underwent genetic testing at Huntsman Cancer Institute, and the results shook up the family: Laura had a BRCA2 gene mutation, which meant she had greatly increased odds of developing cancer.
The revelation spurred Shannon's mother Susan to get tested, and she was also positive for the gene mutation. Susan decided to get a preventative hysterectomy, and during the surgery, doctors discovered that she already had cancer. But they'd caught it early.
"They told my mom that her children are also at risk, so she pushed us to get tested," said Shannon who lives in Saratoga Springs. "On one hand, I didn't want to get tested because who wants to go through this? But, on the other hand, my sister was getting tested for it, and I didn't want her to be alone."
Three of the four siblings had the gene mutation, including Shannon.
"When I found out, I was on my way to run a half marathon," she said. "That threw off my mind game for sure."
According to the National Cancer Institute, around 45 percent of women with the BRCA2 mutation will develop breast cancer before age 70, and 11-17 percent of women with the mutation will get ovarian cancer during their lifetime. The gene is linked to other cancers as well, including pancreatic and prostate. But what did it mean? What could they do about it? A genetic counselor helped Shannon's family navigate the unfamiliar territory.
Around 45 percent of women with the BRCA2 mutation will develop breast cancer before age 70, and 11-17 percent of women with the mutation will get ovarian cancer during their lifetime.
"We talk to patients about their family history and the option of genetic testing, and then based on their risk assessment or their test results, we provide tailored screening and cancer risk management strategies management strategies," said Wendy Kohlmann, M.A., a genetic counselor at Huntsman Cancer Institute's Family Cancer Assessment Clinic.
Only 5-10 percent of cancers are hereditary, according to the American Cancer Society. Kohlmann says signs that may indicate a genetic connection include cancer developing at a younger than average age, relatives getting multiple primary cancers, and several relatives on the same side of the family being diagnosed with similar types of cancer.
For Shannon, knowing is a heavy burden, but it's helping her make proactive decisions about her health.
"I can't get my pancreas removed, but I can get my ovaries and breasts out, so I can get them before they get me, I guess you could say," said Shannon, whose three children have a 50 percent chance of inheriting the gene mutation.
Now that she's in her 30s, Shannon meets with an oncologist regularly and gets a breast MRI or mammogram every six months.
"It's a big scary thing, but knowledge is power, and I have time to take action," she said. "I feel good that I have a plan and can do something about it instead of avoiding it and hoping it goes away."
"It's a big scary thing, but knowledge is power, and I have time to take action. I feel good that I have a plan and can do something about it instead of avoiding it and hoping it goes away."
Shannon lost both her mother and aunt in the last few years. Her aunt died of cancer, and her mother, after beating cancer following a four-year battle, died of a surgery-related blood clot.
"If she wouldn't have talked with her sister and gotten tested, who knows if they would've caught it?" Shannon said. "She might not have even had those four years — I have to look at it positively. Catching it early gave her a fighting chance."
Many cancers, such as pancreatic and brain tumors, can't be prevented even if you know you're at risk, but others can. Kohlmann points out that families with a hereditary form of colon cancer called Lynch syndrome have a 50-80 percent chance of developing colon cancer, but almost all of these cancers can be prevented if colonoscopy screenings begin at age 25 and are repeated every 1-2 years.
"We help people have the option to be proactive and for them to feel empowered about their health rather than feel like they have a dark cloud of risk hanging over them," Kohlmann said.
"We help people have the option to be proactive and for them to feel empowered about their health rather than feel like they have a dark cloud of risk hanging over them."
This Thanksgiving, consider talking with your family about health history over some pumpkin pie. Ask older family members what they remember about relatives who have passed. If an uncle or grandmother has had cancer, it's not important to grill them about details or treatments.
"People like to tell stories, so you can start a conversation by saying ‘What was that experience like for you?' and ‘How are you feeling now?'" Kohlmann said.
You can use this Family Health History Toolkit to help you get started and track your findings.
If you are concerned about patterns or see red flags, contact a Huntsman Cancer Institute genetics counselor at 801-587-7000.
