When Tiffany Graham Charkosky’s mother passed away from colon cancer three decades ago, her family considered it a tragic misfortune.
At the time, Tiffany was just 11, and her mother was nearing her 31st birthday.
Then, about 15 years later in 2012, Tiffany’s uncle also succumbed to the same disease at 46.
Weeks before his death, he had undergone genetic testing, which showed he was positive for Lynch syndrome. This hereditary condition elevates the risk of colon cancer, even in younger, generally healthy individuals.
After this revelation, Tiffany’s widowed aunt encouraged her and other family members to get tested.
“I didn’t even know it was something to worry about at that point,” Tiffany, now 43, shared.
However, the test results were grim: both Tiffany and her brother were found to have Lynch syndrome.
At the time, Tiffany was 30 and expecting her second son. She learned she had up to an 80% increased risk for several types of cancer, including colorectal, endometrial, breast, and pancreatic.
“It was really alarming. I was around the same age when my mom got sick,” she said. “This definitely made me anxious about my health and my family’s as well.”
It’s estimated that about one in 300 Americans—roughly one million individuals—are born with Lynch syndrome, but many remain unaware, as genetic testing is the only way to identify it.
Most people only seek testing once they or a family member is diagnosed with a linked cancer, leaving countless individuals unaware of their risks.
This condition arises from mutations in specific genes responsible for correcting DNA errors, which, when defective, can lead to uncontrolled cell growth and cancer.
Lynch syndrome significantly raises the chance of developing colorectal cancer, a concern that has been on the rise among younger Americans.
In the past two decades, colorectal cancer rates in those under 50 surged from 8.6 cases to 13 cases per 100,000 people.
The projections indicate a 90% increase in colorectal cancer diagnoses among 20 to 34-year-olds from 2010 to 2030. Alarmingly, rates among teenagers have escalated by 500% since the early 2000s.
For the average person, the risk of developing colorectal cancer is about 5%, but that figure can rocket to 40-80% for those with Lynch syndrome.
Moreover, women face a 40-60% increased risk for ovarian and breast cancers, according to cancer experts.
Before learning about her condition, Tiffany and her siblings had been having colonoscopies every five years due to their mother’s early passing.
Generally, unless there’s a significant family history, colonoscopies are only suggested every ten years, starting at age 45.
Since her Lynch syndrome diagnosis, Tiffany now undergoes annual colonoscopies, along with periodic endoscopies for esophageal cancer, yearly mammograms, and skin cancer screenings.
To mitigate risks of uterine and cervical cancers, she had a hysterectomy six months following her diagnosis and removed her ovaries shortly after her 40th birthday to further reduce her ovarian cancer risk.
Given that colon cancer can also be influenced by diets rich in processed meats and sodium, Tiffany tries to prioritize whole, unprocessed foods.
“I strive for moderation,” she stated. “I focus on getting enough sleep and making exercise a priority. It’s really about living a balanced life rather than strictly restricting what I eat.”
Currently, it’s uncertain whether her two sons, aged 13 and 16, also have Lynch syndrome. Medical advice suggests waiting until they are adults to allow for more informed decision-making regarding testing.
“They recommend letting kids mature so they can handle the emotional aspects if they are diagnosed,” she explained.
After her diagnosis, Tiffany struggled to find resources on Lynch syndrome, which led her to write a book in 2015 titled “Living Proof: How Love Defied Genetic Legacy.” It was released this October.
Reflecting on her journey, Tiffany realized she wanted to share her experiences, feeling the need to articulate her thoughts surrounding the diagnosis.
By sharing her story, she hopes to empower others facing similar risks to realize they haven’t done anything wrong. She emphasizes that confronting these risks, despite the fear, can pave the way for a better future.
Her book is available through various outlets, including Amazon and Barnes & Noble.
