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 it might mean. Five days later, the doctor’s prediction was confirmed. He had Stage 3 colon cancer. The cancer had spread to his lymph nodes. It’s problematic because statistics indicate that more and more young people are being diagnosed with the disease. The American Cancer Society (ACS) notes a 51 percent increase among those under age 50 over the last 25 years. A 2018 survey from the Colorectal Cancer Alliance found 67 percent of young-onset colorectal cancer patients saw at least two doctors and as many as four before being diagnosed. This delay leads to a much later diagnosis and worse outcomes.
Learning to Be a Self-Advocate
The few weeks after Hensel’s diagnosis were a blur of doctor 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 risk for colon cancer as well as a host of other cancers, including uterine cancer, stomach cancer, breast cancer, ovarian cancer, and pancreatic cancer, among others. Approximately 3 to 5 percent of all cases of colorectal cancer are believed to be caused by Lynch syndrome. The risk of developing colon cancer can be as high as 80 percent among those with the disorder. “Most of the time, doctors blame diet and being obese for getting colorectal cancer,” says Hensel. “It made me feel better to know that this wasn’t on me and that it was bound to happen because of genetics.” It also raised a host of other questions and concerns, particularly about what lay ahead for his two young children. Colorectal cancer usually begins as a slow-growing noncancerous polyp on the inner lining of the colon that, left untreated, becomes malignant. 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 regretted not being more assertive with his doctor. He decided to become his own health advocate, learn as much as he could about the disease and not 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,” says Hensel. He got a second opinion from the 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.
Becoming and Advocate for Others
Following radiation and chemotherapy, Hensel traveled to Houston and underwent a 12-hour surgery on August 23, 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. He had difficulty sitting for more than 10 minutes. A year later, Hensel has resumed 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 every 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 happening to others by serving on the Never Too Young advisory board for the Colorectal Cancer Alliance. He also helps with the buddy mentoring program. He plans to delay having his five- and seven-year-old children tested for Lynch syndrome until they are old enough to understand the implications and follow the recommended preventive protocol should they 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.”
