Lynch Syndrome Leads to Colorectal Cancer

Matt Brueseke, PhD, is an associate professor of geology at Kansas State University. During the school year, he’s a mild-mannered teacher, husband and father of 2.

But when summer rolls around, Matt becomes a real-life Indiana Jones. He travels by bush plane to Alaska and drives his 4x4 truck to remote locations in the Great Basin, Yellowstone Province, the Pacific Northwest and beyond.

“I like research,” says Matt. “I’m interested in how rocks form, especially rocks that have solidified from lava or magma. We can learn how volcanoes developed, when they were active and the likelihood of future eruptions.”

In summer 2016, Matt explored the Wrangell Volcanic Belt in Alaska. It was a successful trip but it would be his last for a while. Instead, Matt would apply his research acumen to navigate a new subject – his own healthcare.

Clues of colorectal cancer

At 41, Matt experienced symptoms he assumed were from hemorrhoids. When the rectal bleeding grew worse he went to his family physician.

“She suggested I wait and see,” Matt recalls. “But I contacted a gastroenterologist in Manhattan. Based on my symptoms, they scheduled me for a colonoscopy right away.”

Matt was right to advocate for himself. The colonoscopy revealed stage 2A colorectal cancer. Matt's gastroenterologist initially referred him to a surgeon in Wichita, who suspected a hereditary condition called Lynch syndrome. A blood test confirmed the physician’s theory.

Lynch syndrome is a mutation in 1 of 5 genes. It leads to an increased risk of colorectal, endometrial and other cancers – often before the age of 50. As many as 1 in 300 people may have 1 of these mutations.

“I was surprised to find out I had Lynch because there was no family history of colorectal cancer,” says Matt. “If I had known I carried the mutation, I would certainly have had a screening much earlier.”

Gathering information

After meeting with the surgeon in Wichita, Matt also wanted to get a second opinion. In January 2017, Matt traveled to The University of Kansas Cancer Center. There, he met with medical oncologist Raed Al-Rajabi, MD, and surgical oncologist John Ashcraft, DO.

“I like the team approach here, the NCI designation, and of course I’m partial to an academic setting,” says Matt. “Dr. Al-Rajabi and Dr. Ashcraft are more than cancer generalists. They study colorectal cancer and know the latest, cutting-edge treatments and I like how they collaborate.”

Dr. Al-Rajabi praises Matt’s diligence. “He did everything right,” Dr. Al-Rajabi says. “Abnormal bowel habits or blood in the stool can be normal for a time, but if it continues, you have to be proactive.”

Mapping out a strategy

After confirming Matt’s diagnosis, a multidisciplinary team of specialists convened to discuss his case and determine next steps.

This meeting, called a tumor board, is an important part of colorectal cancer care – and all cancer care – at The University of Kansas Cancer Center.

“We recommended 6 weeks of oral chemotherapy and radiation therapy to shrink the cancer. Then, surgery to remove it,” Dr. Al-Rajabi explains.

Because it’s a 2-hour drive from Manhattan to Kansas City, Matt chose to receive treatment close to home. His cancer team orchestrated all the details.

“We often collaborate with private oncologists and cancer centers throughout the region for the convenience of our patients,” Dr. Al-Rajabi says. “We monitor the treatment to ensure patients receive the best possible care.”

In Manhattan, Matt worked with oncologist Travis L. Koeneke, MD, and radiation oncologist Martin Bell, MD. He was in awe of the physicians, technicians and nurses in Manhattan and Kansas City. “They all have a tough job to do,” he says. “And they made my journey easier.”

Colorectal cancer treatment

On May 10, 2017, Matt traveled to Kansas City for surgery. Dr. Ashcraft removed the cancer and reattached the remaining colon sections. He used robotic surgery because it is less invasive than traditional surgery. Patients recover faster and experience less pain.

“The resection went well,” says Dr. Ashcraft. “We removed 10 inches of rectum and sigmoid colon, including 20 lymph nodes. Matt also required a temporary ostomy.”

An ostomy is an opening in the abdomen to discharge waste while the colon recovers from surgery. A removable collection bag connects to the opening.

After surgery, Matt’s team held another tumor board. Dr. Al-Rajabi attended. “We weighed the risks and benefits of chemotherapy after resection. Lynch syndrome patients don’t always respond to chemo,” Dr. Al-Rajabi says. “In Matt’s case, we decided to do 6 more rounds in case any cancer cells remained.”

The surgery took more out of Matt than he expected. “I was used to hard days in the field doing geology research,” he says. “I have hiked for miles in all kinds of weather carrying a backpack filled with 30-to-40 pounds of samples. I was physically strong going into this, but the surgery and ostomy were emotionally hard.”

Traversing new territory

During summer 2017, Matt learned how to manage an ostomy bag. And he began weekly chemotherapy infusions that lasted 3 hours each.

“I didn’t get nauseated or sick. My blood counts were good. It just wore me out,” he shares. “In the back of your mind you know this is cancer and you’re always wondering what will happen.”

Matt tried to stay fit during his recovery period by walking the hills of Manhattan. He also worked with physical and occupational therapists.

Staying mentally fit was more difficult. Matt’s wife, Emily, and their 2 children were supportive. “Emily was really positive,” Matt recalls. “That was especially important on days that I was not.”

Finally, Matt reached out to a psychologist who helped him work through his depression. He also started taking an antidepressant. His outlook improved.

Looking ahead

In fall 2017, Matt returned to teaching. He also finished chemotherapy. Best of all, his temporary ostomy was reversed during a second surgery with Dr. Ashcraft.

“Now I see Dr. Ajay Bansal in the cancer center’s high-risk gastroenterology clinic,” Matt says. “I will have a colonoscopy, bloodwork and urinalysis every year and an endoscopy every 2 years.”

Further testing revealed Matt inherited Lynch syndrome from his father. At 75, Matt’s dad is living proof that the gene mutation doesn’t always lead to cancer. However, those with Lynch syndrome should be screened regularly.

Matt had his first follow-up colonoscopy and endoscopy in January 2018 with gastroenterologist Scott W. Grisolano, MD. One new polyp had already grown in his colon, but was easily removed during the exam. Lynch syndrome polyps grow fast.

“I know some people are averse to the colonoscopy procedure, especially the prep,” Matt says. “But it is such an effective screening tool. And it’s not as bad as the procedures that will happen if you develop cancer. If something is odd, get it checked out.”

A good colorectal cancer prognosis

Next summer, Matt plans to return to his fieldwork in Alaska.

“Matt loves rocks,” says Dr. Al-Rajabi with a smile. “I was happy to help him get back to the work he is so passionate about. He has a very good prognosis.”

Should Matt’s cancer recur, The University of Kansas Cancer Center now offers immunotherapy treatment for colorectal cancer. We also have other clinical trials that may prevent cancer from developing in patients with Lynch syndrome.

Sharing the knowledge

Over the years, Matt has shipped hundreds of pounds of rocks back to Kansas State from the field. He enjoys sharing the specimens with eager students. Today, Matt also imparts insightful nuggets of wisdom about his journey with cancer.

“I’m able to give my students perspective,” he says. “I tell them to take care of their health and let me know if something is going on. We’ll figure it out. Life is more important than your thesis.”