Never Too Young: A 30-Something Battles Hereditary Colon Cancer

Wes Hensel had complained to his doctors about occasional rectal bleeding for four years. But because he was young, his gastroenterologist assured him that it was nothing to worry about. Just hemorrhoids.

By late 2017, the Tucson-area aerospace engineer had had enough. He persuaded his physician to perform a colonoscopy and surgically remove the hemorrhoids. On the morning of the surgery, the doctor promised him the procedure would be routine and quick. “The doctor said, ‘I’m going to get this done and we’ll see you for follow-up,’” Hensel says.

When Hensel opened his eyes in the recovery room, he knew right away that something was wrong. “The nurse said, ‘The doctor wants to talk to you,’” Hensel recalls. “I thought, That wasn’t part of the plan, so something must be wrong.”

Even then, Hensel didn’t anticipate what came next. The procedure had revealed a tumor so low in his colon that even a digital exam would have detected it. “It looks bad visually and I’d be surprised if, when the biopsy comes back, it’s not cancerous,” the doctor said. “If I were you, I’d start thinking about malignancy and treatment.”

Hensel was stunned and completely unprepared for what this might mean. Five days later, the doctor’s prediction was confirmed. At age 34, he had stage 3 colorectal cancer, and it had spread to his lymph nodes.

Hensel’s long diagnostic journey is pretty typical for someone his age. While symptoms of colorectal cancer, as detailed by the American Cancer Society (ACS) — such as abdominal pain, bloating, and rectal bleeding — would immediately raise concern about the disease in someone over 50, far too many patients in their twenties and thirties with similar symptoms get brushed off.

The weeks after Hensel’s diagnosis were a blur of doctor's appointments, blood tests, and scans. Because he was so young, doctors suspected his cancer might have a hereditary link. They performed a staining test on the tumor to look for a genetic abnormality and referred him to a genetic counselor, who explained that he did indeed carry a genetic mutation that increased his risk for the disease.

Hensel had tested positive for Lynch syndrome, caused by specific mutations that increase the risk of colorectal cancer, as well as a host of other cancers, including breast, gastric, ovarian, pancreatic, and uterine cancer, among others.

“It made me feel better to know that this wasn’t on me and that it was bound to happen because of genetics,” Hensel says. But it also raised a host of other questions and concerns for Hensel, particularly about what lay ahead for his two young children.

While Hensel was heartened to learn that his cancer was potentially curable with an aggressive treatment protocol, he was also angry that his complaints had not been taken seriously, and he regretted not being more assertive with his doctor.

He decided to become his own health advocate, to learn as much as he could about the disease, and to refuse to blindly accept whatever he was told. Hensel’s doctors prescribed a course of radiation, followed by surgery and chemotherapy. They also advised against removing a cancerous lymph node that was not located close to the tumor. Instead, they recommended treating it with radiation and chemotherapy.

“So, you’re pretty sure this lymph node is cancerous and you’re just going to leave it there? That didn’t sit right with me,” Hensel says. He got a second opinion from MD Anderson Cancer Center in Houston, and felt more comfortable with their recommendation: a longer, more complicated surgery to remove the lymph node even though it would result in a permanent colostomy.

Following radiation and chemotherapy, Hensel traveled to Houston and underwent a 12-hour surgery in August 2018. He spent six nights in the hospital and stayed with family nearby for a month before returning to Tucson. His recovery was slow, and plagued by pain and insomnia. It was difficult for him to sit for more than 10 minutes.

A year later, Hensel was able to resume a normal work and exercise schedule, and his life is pretty much the way it was before his diagnosis, albeit with a lot more gratitude for each day. “I feel lucky, but I’m still scared of the recurrence and will be monitored closely for life.”

Hensel tries to prevent what happened to him from happening to others by serving on the Never Too Young advisory board for the Colorectal Cancer Alliance. He also helps with their Buddy Program, a peer-to-peer mentoring program for patients, survivors, and caregivers.

He plans to delay having his children tested for Lynch syndrome until they are old enough to understand the implications and follow the recommended preventive protocol if they do have the genetic mutation.

“That’s an ongoing worry for me, but I don’t want to lie to them and I don’t want to scare them either. I’m making sure they have a good diet and doing whatever I can to give them the best chance not to get it.”

• A personal history of colorectal cancer or certain polyp types
• A family history of colorectal cancer
• A personal history of an inflammatory bowel disease, such as ulcerative colitis or Crohn’s disease
• A hereditary colorectal cancer syndrome that increases risk, such as Lynch syndrome
• A personal history of radiation to the abdomen or pelvic area to treat a previous cancer

If any of these do apply to you, your risk level could be higher, and your provider may want to start screening sooner than age 45.

Colonoscopies have long been the screening of choice for colorectal cancer, but if you dread the thought of this procedure and its prep, there’s good news. The ACS has approved several new screening techniques, including at-home colorectal cancer tests.

• Fecal Immunochemical Test (FIT) A FIT test identifies blood in a stool sample you send to a lab and is recommended once a year.
• Guaiac-Based Fecal Occult Blood Test (gFOBT) This annual test also looks for blood in your stool, but uses a different testing mechanism to detect it.
• Multi-Targeted Stool DNA (mt-sDNA) or RNA (mt-sRNA) Test Another stool test, these tests look for DNA or RNA that may point to a growing cancer, and are recommended every 3 years.
• Colonoscopy This classic screening requires your bowels to be cleared out the day before with a laxative. The day of the test, you will be under light sedation and your doctor will look at the inside of your bowel with a camera attached to a thin flexible tube. This test is recommended every 10 years. A sigmoidoscopy is similar to a colonoscopy, but only examines part of the colon, so these are rarely used.
• CT Colonography Also known as a virtual colonoscopy, this imaging test does not require sedation, but still involves a bowel prep. In this exam, a combination of computed tomography (CT) and X-ray images give your provider a 3D view of your colon. This test is recommended every 5 years.
• Blood Test A blood sample is tested to look for DNA changes that could indicate cancerous or precancerous growths in the colon. While this is an approved screening method, it’s not preferred, as it’s less sensitive in detecting precancerous or cancerous growths.

Additional reporting by Abby McCoy, RN.