CAPE ELIZABETH — As Trevor Maxwell greeted a visitor on Tuesday morning with a warm grin and a firm handshake it was hard to imagine that not even two years ago he was diagnosed with stage 4 colorectal cancer, an advanced form of a disease that most people don’t walk away from.
Now, the longtime Cape Elizabeth resident, 43, said he is grateful to be doing so well, and is using a new online platform to get the word out to everyone, especially men, to get screenings and regular checkups to make sure they don’t get caught by surprise, like he was.
Recently, the self-employed public relations consultant start started Man Up to Cancer, an online community that includes a blog, survivor profiles, and a private Facebook group that, since its beginning in January, has already amassed 400 members. This week, coinciding with colorectal cancer awareness month, Maxwell talked about the community and his experiences fighting the disease.
It started in late 2017, when he started to notice he was feeling really tired. Being 41 years old at the time and a father of two girls, he chalked it up to just life running him down a bit, but when he wasn’t feeling any better in March 2018, he went to the doctor anyway and discovered he had a severe form of anemia. His doctor ordered a colonoscopy, just in case.
“Even before we did the test, cancer was the last thing on his mind,” Maxwell said of the doctor, but in a meeting just after the test, Maxwell got the devastating news: There was a 4-inch tumor growing in his colon.
That kicked off a new world of fear and anxiety, punctuated by three surgeries: one to remove the tumor and two more to remove other spots where the cancer had spread to his liver.
“All of that was a period of shock and fear, for sure,” he said.
He is now doing rounds of immunotherapy, which involves medicine that weakens cancer cells enough for the body’s immune system to fight them naturally. Maxwell said there’s a little pain and fatigue, but it’s not as unpleasant as more aggressive chemotherapy is.
Trevor Maxwell recovers from surgery in November 2018 to remove cancerous tumors from his liver, one of three surgeries Maxwell went through in a little over a year’s time. Photo courtesy Trevor Maxwell
“Overall, I’m able to live a pretty normal life,” he said.
According to the American Cancer Society, colorectal cancer is the third most diagnosed cancer among men and women in the United States, excluding skin cancers. While the number of deaths from the disease has been dropping in recent years, the society estimates colorectal cancer will be responsible for 53,200 deaths nationwide in 2020.
In the past, the disease was thought to be confined to those age 50 or older, but that’s not the case anymore, according to Dr. Karin Cole, an oncologist at Northern Light Mercy Hospital.
“Patients are being diagnosed in their 40s, and even in their 30s,” she said.
Data released in 2017 indicating an increase in diagnoses in younger people prompted the society to lower from 50 to 45 the age at which it recommends people get a routine colonoscopy screening for colon cancer. In a statement at the time, the society said a person born in 1990 has twice the risk of colon cancer and four times the risk of rectal cancer as a person born in 1950.
Cole said no one is sure yet just why the risk is increasing, but it makes it even more important now to get screened.
“The best screening test is the one that gets done,” she said.
For most cancer survivors, the fear of jinxing an improved prognosis makes “cure” somewhat of a dirty word, but Maxwell said he is classified as “stable disease.” His goal is to be in what cancer patients call “NEDville,” with “NED” standing for “No Evidence of Disease.”
Trevor Maxwell, 43, stands before a tree on his family property in Cape Elizabeth. During his recovery from colorectal cancer, he called this tree “my spiritual place.” Staff Photo by Sean Murphy
During his treatment, Maxwell noticed that most in-person and online emotional support groups had very few men in them, prompting him to start Man Up to Cancer. Through the community, he has also worked with the American Cancer Society, the Dempsey Center, and the Maine Cancer Foundation.
Maxwell said the group is now working on organizing in-person outings, and hopes it will give men who might be less likely to attend a traditional group therapy session a forum where they can get the support they need.
“Cancer requires you to be tough, but it also requires you to accept help,” he said.
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