Outside of being a rocket scientist, technically a Program Manager and Systems Engineer in the Aerospace Industry, Wes Hensel was living a normal life. A self-described “nerd with OCD” who overthought everything, he had a beautiful wife and two wonderful children Lilah and Amelia, to keep him grounded with a tornado of mess. And even though he sometimes pulled out a chart to organize his sock drawer, life was good.
Around the age of thirty he began to have hemorrhoids. More precisely, he began to have rectal bleeding that the doctors told him were hemorrhoids because he was far “too young” for it to be anything else more significant. After 4 years of misdiagnosis, which is not an uncommon thing for an early age onset colon cancer patient, he went in for a colonoscopy. The results of that colonoscopy showed stage 3b colorectal cancer.
Genetic testing of the tumor would throw another curve ball.
After diagnosis, tissue testing in the tumor led doctors to believe there could be a genetic connection. Further testing showed that Wes has the MLH1 gene mutation, which was the hallmark of Lynch Syndrome, a genetic mutation which creates a predisposition towards a number of cancers including colorectal, ovarian, brain, and others. What made this so surprising was that Wes had no family history of colorectal cancer at all.
Wes took the Lynch Syndrome diagnosis in stride. While a shock, especially because of the lack of a family history, for a “numbers and data” person like Wes, the diagnosis provided critical information. With this knowledge, he knew to be on the lookout for other issues and received both annual colonoscopies and endoscopies to make sure he was clean.
Treatment would begin with a process known in the cancer community as chemo-rad. Wes would undergo 28 doses of radiation while taking oral chemotherapy. Then came four doses of a stronger chemotherapy called FOLFOX to help shrink the tumor and scans to prepare for surgery.
The surgery would be an extensive procedure called an Abdominoperineal Resection, or APR, resulting in a permanent colostomy.
Cleanup FOLFOX chemotherapy followed, ending in November of 2018. Wes would continue scans and testing (yes, someone with a colostomy can have a colonoscopy), but in the short term, he would remain NED (No Evidence of Disease).
Having cancer helped ignite one of Wes’ lifelong passions, educating others. His goal as an advocate would be to reach out as a survivor and let others know that colorectal cancer can and does happen to younger, healthy people, with no family history of disease. He stresses getting screened and tested, especially if there is a family history of colon cancer or any history of Lynch Syndrome.
Beyond just screening, Wes’ advocacy focuses on educating people on the proper diet and exercise that allow younger people to avoid a future diagnosis of colorectal cancer.
Wes also tackles the perceived stigma of having a colostomy. The ostomy can represent a great deal of what is taboo about colorectal cancer. An ostomy brings things we don’t talk about, like going to the bathroom, to the forefront. Wes however, like many who go through the ostomy process (especially following chemotherapy, surgery and radiation), found the ostomy to be more of a blessing than a burden.
Having cancer was life changing in many ways for Wes. In his words, “The greatest gift I got from cancer is knowing there might not be a tomorrow and I need to say yes to today.”
As of the writing of this piece, he is approaching his five year mark as NED (No Evidence of Disease), an important milestone in a patient’s progress. He still experiences a bit of “scanxiety,” the trepidation of the unknown many cancer patients feel before a scan, but he knows that , especially considering his Lynch mutation, the scans are more important than ever.
These days he’s focusing on the important things. There’s plenty of time for trips and board games with his wife, Susana, and his daughters, Lilah and Amelia, as well as family hikes with their dogs, Cooper and Poppy. Things are going well.
The spreadsheets can wait.