How Lynch Syndrome May Have Contributed to His Colon Cancer Diagnosis
- A 47-year-old father was diagnosed with lynch syndrome (a hereditary condition that increases cancer risk) and colon cancer.
- He underwent months of treatment, which included surgery to remove most of his colon. During treatment, he desired to accomplish something adventurous, and a 100-mile mountain bike race fit the bill for Matt Sletten.
- The two major subtypes of hereditary colon cancer are called Lynch Syndrome, also known as hereditary nonpolyposis colorectal cancer, and familial adenomatous polyposis (FAP). People with FAP have hundreds, or even thousands, of polyps that coat the inside of their colon. Because of this, without treatment, all patients with FAP will go on to develop colon cancer.
- Colon cancer experts say a colonoscopy is among the most effective colon cancer screening methods. It involves a long, thin tube attached to a camera used to examine the colon and rectum for polyps (small growths in the colon that aren’t yet cancerous). If found, doctors can remove them during the procedure.
- Colorectal screenings are recommended to begin around age 45. However, people at increased risk – such as having a family history of the disease – may want to screen sooner. Discussing your screening options with your doctor is recommended.
After treatment and no longer needing a colostomy bag, he powered through one of the world’s toughest mountain bike races, pedaling 100 miles to prove that cancer couldn’t steal his spirit.
Lynch Syndrome: The Inherited Risk That Demands Early Action
For individuals with Lynch syndrome, the stakes are high—and often hidden. Passed down from either parent, this inherited condition dramatically increases the risk of developing several types of cancer, especially colorectal cancer. In fact, those with Lynch syndrome face up to an 80% lifetime chance of developing colon cancer.
Doctors rely on key family and personal history indicators to identify potential cases:
- A diagnosis of colon or endometrial cancer before age 50
- Three relatives with colon cancer
- Two consecutive generations affected (e.g., a mother and grandmother)
- At least one relative diagnosed before age 50
Estimated general lifetime cancer risks for people with Lynch syndrome:
- Colorectal cancer 20% – 80%
- Endometrial cancer 15% – 60%
- Ovarian cancer 1% – 38%
- Stomach cancer 1% – 13%
- Hepatobiliary tract cancer (liver/bile duct/gallbladder) 1% – 4%
- Urinary tract cancer (kidney, ureter, bladder) 1% -18%
- Small bowel cancer (intestines) 1% – 6%
- Pancreatic cancer 1% – 6%
- Brain 1% – 3%
Dr. Ophira Ginsburg, formerly of NYU Langone’s Perlmutter Cancer Center and now a Senior Scientific Officer at the National Cancer Institute, emphasizes the power of early detection:
“Colon cancer is something that really should be completely preventable through screening and appropriate interventions, like removal of polyps, for example.”
She urges proactive care for those with Lynch syndrome:
“Individuals who carry one of the genes that’s associated with Lynch syndrome can be offered testing, certainly screening, at a much earlier age than you normally would have suggested by your care provider—even as early as the age of 25. We also would screen with a colonoscopy much more frequently.”
After being diagnosed with colon cancer, Sletten faced a grueling treatment path. Surgeons removed his colon, leaving his rectum and anus intact. Part of his stomach was also taken out. For five months, he relied on a colostomy bag to manage waste.
“It was tough. It was extremely tough,” said his wife, Courtney Sletten.
WATCH: How One Survivor Learned to Live With a Colostomy Bag
Understanding Colostomies and Ileostomies: What Patients Should Know
A colostomy or ileostomy is a surgical procedure where part of the intestine is rerouted through an opening in the abdomen. Waste exits the body into a specially designed bag that attaches to the skin. The size and placement of the stoma—the opening—can vary: some are small, others larger; some sit on the left side of the abdomen, others on the right or even in the center. These differences depend on the type and location of the cancer, and which section of the intestine was removed.
Why Some Patients Need a Colostomy Bag
“Any time you have surgery on the intestine, you can’t predict how well it’s going to heal,” explains Dr. Heather Yeo, surgical oncologist at Weill Cornell Medicine and SurvivorNet advisor.
In many cases, surgeons are able to reconnect the intestine after removing the affected portion. When healing goes smoothly, patients may not need a colostomy bag at all.
“The majority of the time, we can put patients back together; we connect one piece of the intestine back to the other. If we can do that successfully, they don’t need to have a colostomy bag,” Dr. Yeo says.
However, complications can arise. Emergency surgeries due to intestinal blockages often require a temporary colostomy. In other cases, when tumors are too large or invasive to remove safely, a permanent colostomy may be necessary.
“Sometimes people get blockages and need emergency surgery, and those patients are more likely to need a temporary colostomy bag. Sometimes people have cancers that are too big to take out, and those people may also need a colostomy bag,” Dr. Yeo adds.
As Sletten’s cancer treatments wound down, he set his sights on something adventurous, a positive beacon of hope, for once he’s able, he can reach out and accomplish.
“I wanted to do something when I’m back and healthy, it seals the deal that I’m back,” Sletten said.
He set his sights on the Leadville 100-mile mountain bike race, an “extreme Rocky Mountain terrain — starting at 10,152 feet, climbing to 12,424 feet” in Leadville, Colorado, a small town about 100 miles southwest of Denver.
He competed in part to prove to himself and others, “You can still go out and be active and do things” despite facing insurmountable challenges like a cancer diagnosis.
“Being diagnosed with cancer doesn’t mean that your adventures stop or that your life has to change drastically; you can still get out and be active and do things,” says Sletten.
As Sletten reached the finish line while completing the arduous bike ride, his 13-year-old daughter met him and ran alongside him as he crossed the finish line tape.
Sletten hopes others hearing about his cancer journey heed his advice and get checked for colon cancer when they’re eligible.
Colorectal screenings are recommended to begin around age 45. However, people at increased risk, such as those having a family history of the disease, may want to screen sooner. Discussing your screening options with your doctor is recommended.
Understanding Sletten’s Colon Cancer Diagnosis
Colon cancer is very treatable and curable if caught early. Colon cancer screenings can involve at-home tests such as Cologuard, but a colonoscopy is more effective, according to SurvivorNet experts. It involves a long, thin tube attached to a camera used to examine the colon and rectum for polyps (small growths in the colon that aren’t yet cancerous). If found, doctors can remove them during the procedure.
The cancer starts when abnormal lumps called polyps grow in the colon or rectum. It takes up to 10 years for a colon polyp to become full-blown cancer, according to SurvivorNet experts.
The American Gastrointestinal Association lowered the recommended initial age for colorectal screening from 50 to 45. However, experts recommend screening earlier for some people who may be at an increased risk of developing colon cancer, such as those with a family history of the disease.
WATCH: Debunking misconceptions about colon cancer.
The most poignant symptom of colon cancer is a change in bowel habits. This may include constipation or diarrhea due to changes in the size or shape of bowel movements. A change in stool color, particularly black or tarry stools, can indicate bleeding from a tumor that lies deep in the colon.
Other symptoms can be harder to pinpoint, such as abdominal pain and unintentional weight loss. Finally, some tumors bleed a small amount over a prolonged period, resulting in anemia (a low red blood cell count) that is detected through blood work.
What Treatment Options Exist for Colon Cancer?
“There are a lot of advances being made in colorectal cancer,” Dr. Yeo told SurvivorNet.
Colon cancer treatment is more targeted, meaning doctors often test for specific changes or genetic mutations that cause cancer growth.
Biomarkers are key to tailoring specific treatments. Biomarkers are molecular patterns becoming more commonly used in colon cancer diagnosis, prognosis, and management. According to the National Cancer Institute, a biomarker is “a biological molecule found in blood, other body fluids, or tissues that is a sign of a normal or abnormal process, or a condition or disease,” such as cancer.
“In colon cancer, we’re starting to look more and more at people’s biomarkers, so we’re starting to take the cancers, sequence them, understand where the different mutations are to figure out whether or not someone has a normal gene here or an abnormal gene,” Dr. Yeo explained.
“Those are the areas that people want to be able to target a little bit more. We’re getting close to more of what we would call precision medicine, meaning we can start looking at people’s genetic mutations and think about how they might respond to different drugs.”
There are different types of biomarkers, including DNA, proteins, and genetic mutations found in blood, tumor tissue, or other body fluids. The biomarkers most commonly used in colon cancer management are:
Genetic mutations within the tumor, such as MMR/MSI, KRAS, BRAF, and HER2
Bloodstream carcinoembryonic antigen (CEA)
CEA is a protein produced by most tumor cells (but not all) and can be picked up in the bloodstream. High CEA levels do not establish a colon cancer diagnosis. However, higher CEA levels correlate with a worse prognosis and potential metastasis. Carcinoembryonic antigen is important for post-treatment follow-up to ensure the cancer hasn’t returned. Be sure to check with your doctor before treatment starts to ensure a CEA blood sample has been obtained.
More on Treating Colon Cancer
Surgery and chemotherapy are common approaches to colorectal cancer.
Some examples of Food and Drug Administration (FDA) approved chemotherapy drug treatments include:
- FOLFOX: leucovorin, 5-FU, and oxaliplatin (Eloxatin)
- FOLFIRI: leucovorin, 5-FU, and irinotecan (Camptosar)
- CAPEOX or CAPOX: capecitabine (Xeloda) and oxaliplatin
- FOLFOXIRI: leucovorin, 5-FU, oxaliplatin, and irinotecan
- Trifluridine and tipiracil (Lonsurf)
WATCH: Understanding Your Options with Metastatic Colon Cancer
How Will Using a Colostomy Bag Impact Everyday Life?
During his cancer treatment, Sletten relied on a colostomy bag—a reality shared by thousands of people every day. Chances are, someone you’ve passed on the street or sat beside in a meeting wears one, and you’d never know. That’s because modern colostomy systems are discreet, manageable, and designed to support a full, active life.
Importantly, the stoma itself isn’t painful—there are no nerve endings in the stoma, so patients typically don’t feel discomfort. In fact, research consistently shows that quality of life after ostomy surgery remains high.
“Once you get over sort of the psychosocial effects, you can lead a totally normal life. It’s not painful. It’s just getting used to a different way,” said Dr. Daniel Labow, Chief of the Surgical Oncology Division at Mount Sinai, in a conversation with SurvivorNet.
Here is guidance on some of the specific scenarios relating to having an ostomy bag.
- Clothes: No need for special clothes. Most bags are invisible under everyday outfits. In the early months, carry a change of clothes and extra supplies just in case.
- Baths and showers: You can bathe or shower with or without your bag—it’s entirely your choice. Protective covers are available if preferred.
- Sports: Most sports are safe to play. A supportive belt can help keep the bag secure during activity.
- Swimming: Yes, you can swim. The pouching system is water-resistant and designed not to leak. Just empty the bag beforehand and check the seal.
- Sex: Intimacy is absolutely possible. Many people use wraps or covers to feel more comfortable and confident.
- Travel: Bring extra supplies and pack them in your carry-on when flying. With preparation, travel is smooth and stress-free.
Can a Colostomy Be Reversed?
In many cases, yes. If the body heals well and the cancer treatment allows, patients may undergo a second surgery—typically two to three months after the initial operation—to reconnect the intestines and remove the bag.
Questions to Ask Your Doctor
If you are facing a colon cancer diagnosis, here are some questions you may ask your doctor.
- What are my treatment options based on my diagnosis?
- If I’m worried about managing the costs of cancer care, who can help me?
- What support services are available to me? To my family?
- Could this treatment affect my sex life? If so, how and for how long?
- What are the risks and possible side effects of treatment?
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