When Tiffany Graham Charkosky lost her mother to colon cancer 30 years ago, her family thought it was a terrible case of bad luck.
Tiffany was just 11 years old at the time, and her mother was only days away from her 31st birthday.
But about 15 years later, in 2012, Tiffany’s uncle then died from the same disease. He was 46.
Just weeks earlier, he had undergone genetic testing that came back positive for Lynch syndrome – a condition caused by hereditary genetic mutations which increases the risk of colon cancer even in young, otherwise healthy, adults.
As such, Tiffany’s widowed aunt urged her and the rest of her family to also get tested.
‘At the time, it wasn’t even a thing I knew to be scared of,’ Tiffany, now 43, told the Daily Mail.
But testing confirmed the worst: Tiffany – and her brother too – had Lynch syndrome.
The Ohio native – who had just turned 30 and was pregnant with her youngest of two sons at the time – was now up to 80 percent more likely than her peers to develop colorectal, endometrial, breast, stomach, esophageal, pancreatic and skin cancer.
Tiffany Graham Charkosky (pictured here as a child with her mother) was just 11 years old when her mother died of colon cancer. Two decades later, Tiffany learned she has Lynch syndrome, which dramatically raises her risk of several forms of cancer
‘It was pretty shocking. I was right around the age that my mom had gotten sick,’ she told the Daily Mail. ‘That definitely sent me into a tailspin of worrying about my own health, then the health of my family.’
About one in 300 Americans (roughly one million people) are born with Lynch syndrome. However, upward of nine in 10 don’t know they have it since genetic testing is the only detection method.
For that testing to happen, patients generally have to wait until they or a family member are diagnosed with one of the forms of cancer it is linked to, leaving hundreds of thousands unaware of their risk.
Lynch syndrome is caused by a mutation in the MLH1, MSH2, MSH6 or PMS2 genes, which are responsible for repairing mistakes in DNA. Mutations in these raise the risk of cells multiplying uncontrollably and becoming cancerous.
Lynch syndrome most often raises the likelihood of developing colorectal cancer, which has skyrocketed in young Americans.
In the past two decades, the rate of colorectal cancer in people under 50 has risen from 8.6 cases per 100,000 people in 1999 to 13 cases per 100,000 people in 2018.
Colorectal cancer diagnoses in 20 to 34-year-olds are estimated to increase by 90 percent between 2010 and 2030, and rates for teenagers have already surged 500 percent since the early 2000s.
The average American has a five percent risk of developing colorectal cancer, but for a patient with Lynch syndrome, that likelihood jumps to anywhere from 40 to 80 percent.
Women, according to MD Anderson Cancer Center, are also at a 40 to 60 percent greater risk of developing ovarian and breast cancer.
Before being diagnosed with the syndrome, Tiffany and her siblings were undergoing colonoscopies every five years to check for colorectal cancer due to their mother’s early death.
Typically, unless a patient has a relevant family history, colonoscopies are only recommended every 10 years and not until age 45.
Tiffany is pictured here as a child with her uncle, who died of colon cancer at age 46. His death prompted the family to be tested for Lynch syndrome
Tiffany (pictured) now gets regular screenings for colon, breast, skin and esophageal cancer
Since being diagnosed with Lynch syndrome, Tiffany now gets colonoscopies every year, along with endoscopies to check for esophageal cancer every one to three years, along with annual mammograms for breast cancer and exams to check for skin cancer.
She had a hysterectomy six months after her diagnosis to prevent uterine and cervical cancer. Just after her 40th birthday, doctors removed her ovaries to prevent ovarian cancer.
Colon cancer is also often caused by diets high in red and processed meats, fat and sodium, so Tiffany tried to focus on eating whole, unprocessed foods as much as possible.
Graham Charkosky’s book, Living Proof, was released last month
‘I just try to live a life of moderation,’ she told the Daily Mail. ‘[I try] to sleep as well as I can and try to make exercise a priority. It’s more about trying to live a balanced life than it is about trying to restrict my diet. That has been what makes me feel best in the long run so far.’
It is currently unclear if Tiffany’s two sons, who are 13 and 16, also have Lynch syndrome.
Doctors recommend waiting until they become adults to test them so they can better cope with the ’emotional weight’ of the disorder, if they have it.
‘The recommendation is to let your children get older so that they can make informed medical decisions and process that information in an age-appropriate way,’ she explained.
In the early years after her diagnosis, Tiffany searched for literature on Lynch syndrome but with little luck. So in 2015, three years after her diagnosis, she wrote the book herself, titled ‘Living Proof: How Love Defied Genetic Legacy’. It came out in October this year.
‘I was like three years past the initial shock and “newborn phase”, and all of that really struck me – that I wasn’t done thinking about this and felt like I was maybe in a position of trying to organize my thoughts and share what that journey looked like,’ she said.
Tiffany says she hopes that, by reading her book, other people with Lynch syndrome are able to ‘take some agency’ back when the cancer risk feels uncontrollable.
‘I want them to know that they didn’t do anything wrong, that they’re still who they’ve always been and that in facing their risks head on, as scary as it is, they’re setting themselves up for a better future,’ she said.
Living Proof: How Love Defied Genetic Legacy on Amazon, Barnes & Noble and others through Little A publishing.