Read Time: 5 minutes
What would you do if you had information that could help save your family? You wouldn’t share it discreetly, you’d scream it from the mountaintops. Sara Bryant-Hart certainly would.
In 2016, Sara was diagnosed with stage 3 cancer of the small intestine. Eight weeks after Sara’s surgery, her brother, Phillip, was diagnosed with stage 4 colon cancer. “When the doctor was asking Phillip questions, his wife had to remind him he had a relative with cancer—me,” Sara says.
That coincidence was of interest to the genetic counselors at Huntsman Cancer Institute.
“I had just had surgery and my doctor asked if I wanted to take part in genetic testing. They said my cancer usually only occurred with people in their 70s and they wanted to see why I had this rare type of disease. Eventually, it dawned on me why they were so interested in my case,” Sara says.
Sara was told she had Lynch syndrome, a dominant genetic condition associated with a high risk of colon, endometrial, ovarian, stomach, small intestine, brain, and skin cancers.
“I got two rounds of palliative chemo before they knew I had Lynch syndrome. Before my third round, my oncologist, Dr. Garrido-Laguna, said it wouldn’t be as effective because of my genetic condition. Having genetic testing saved me from that stress of receiving unnecessary palliative chemotherapy.”
“When I found out about my diagnosis, I felt like it was my responsibility to let my relatives know.”
Geneticists discovered that Lynch syndrome had been passed down from her dad and Sara sent a note to extended family members explaining her results. “I had never heard of it and just assumed I was part of a larger study, but then I realized they were trying to figure out my story and help my family.”
As her extended family members got genetic testing, Sara learned of even more relatives who had Lynch syndrome. This information proved helpful to Phillip’s colon cancer treatment plan. “Now he’s been cancer free for six and-a-half years.”
Despite that information, Sara’s brother, Chris, wasn’t convinced. “It took a while for him to get tested. His wife made him realize he had to do this for his kids, their future, and well-being.”
Chris and his wife have been together for more than 25 years. He’s a loyal, loving husband with four children. “Chris is always there to help and be a handyman in every situation. He’s someone who takes care of everyone else around him,” Sara adds.
Chris found out that he has Lynch syndrome. While in the process of scheduling screening appointments, he started showing signs of sickness. CT scans found abdominal masses.
The results were not promising. Chris was told he had a 10% chance of survival at another institution. “We got Chris into Huntsman Cancer Institute and his doctors told him that pancreatic cancer had metastasized to his adrenal glands.” Doctors treated him with specific chemotherapy drugs coupled with immunotherapy. His oncologist informed him that Lynch syndrome cancers respond incredibly well to both treatments.
What would Sara say to people who need to get genetic testing?
“It’s not only about you. It’s about everyone in your universe. You need to communicate your results with your family. Testing and screening is paramount to people’s well-being and not sharing that information could be dangerous.”
Chris is now being seen regularly at Huntsman Cancer Institute’s clinic in Farmington. He visits with an oncologist and goes to the infusion clinic 20 minutes from his house. “The care has been fantastic,” Sara says. “Since I live in Centerville, more often than not I go to Farmington too, because it’s so close and convenient.”
“You can’t predict the future, but you can learn if you’re going to have a higher chance of developing cancer.”
In regards to her care, Sara has been impressed by Huntsman Cancer Institute’s attention to detail. “Everyone works together and is in it for the greater good. Their goal and desire to treat people is something palpable. My genetic counselor scheduled me for an endoscopic ultrasound after my brother’s pancreatic cancer diagnosis. I didn’t have to make the appointment. My counselor is on top of things and it takes away so much of the stress.”
We all have a family member who doesn’t go to the doctor regularly. Maybe they don’t feel comfortable sharing their personal details or are worried about the results. But Sara wants to emphasize the benefits of genetic testing.
“There are a lot of negative feelings towards genetic testing. People think of the movie Gattaca and it’s not like that. This has been life-changing. My health and life insurance were not affected. It provides you with options. When I found out about my diagnosis, I felt like it was my responsibility to let my relatives know. You can’t predict the future, but you can learn if you’re going to have a higher chance of developing cancer. Not many people get a chance like this and I’m glad I’m one of them.”
Cancer can be unpredictable, but 10% of patients develop it due to hereditary conditions like Lynch syndrome. Knowing your family history is beneficial, but might not be sufficient when trying to figure out your cancer risk.
As Sara pointed out, life can change quickly, so we encourage people to know their family's medical history and talk to their care team about any changes. Genetic testing guidelines are always changing due to improvements in technology.
If any of these descriptions sound familiar to you, please make time to meet with a genetic counselor.
- A close relative with cancer who is under the age of 50
- A close relative who has several types of cancers
- A male relative with breast cancer
- A close relative with ovarian cancer
- A parent, sibling, or child with pancreatic cancer
- Several close relatives on the same side of the family with the same type of cancer or cancers that can be related to each other (example: Lynch syndrome is connected to colorectal, endometrial, ovarian, gastric, small intestine, pancreas, and urinary tract cancers)
Close relatives include parents, siblings, children, grandparents, grandchildren, aunts, uncles, nieces, nephews, and half-siblings.
Have a question about Lynch syndrome or genetic testing?
Submit your questions using our Lynch syndrome question form. To learn more about genetic testing or schedule a meeting with a genetic counselor, call 801-587-9555.