October 24, 2016
Dennis Maione has developed a decidedly black and white view of the medical profession after surviving two colorectal cancer diagnoses over the past 25 years.
For each of his cancers, the Winnipeg father of three has encountered some people, mostly doctors, whom he considers heroes and some whom he considers villains.
If that good guy, bad guy evaluation seems a little simplistic, well, Maione has had an unenviable number of health care encounters over the years from which to draw his conclusions. And every day, that hero-villain narrative helps him make sense of the cards he's been dealt in life.
Maione has a genetic predisposition to cancer, something called Lynch syndrome, the most common cause of inherited colon and endometrial cancer. A person with Lynch syndrome is also at risk for developing cancer at earlier ages than normal and for developing multiple primary cancers.
Maione's first battle with cancer came when he was 27, only a few months after his marriage. His first surgeon informed him that not only would he have to have a colostomy bag for the rest of my life, he would also be impotent as a result of the surgery. After breaking that news, the physician pushed a box of Kleenex across the table at the stunned young couple before him, then got up and left the room. That cold, brusque bombshell forever marked him as a villain in Maione's eyes.
Maione recalls of the day, "I don't know who this guy is. I don't know if he was having a bad day. I don't know if that was just his general demeanor. He treated me like I was a disease. 'Here's this thing. We're going to get rid of it, and you ought to be overjoyed because I'm going to remove this cancer from you.' Without any sense of an impotent newlywed, without any sense of a 27-year-old who has to get a colostomy and live with this for the rest of his life."
After having a good cry, Maione and his wife sought out a second opinion from another doctor. He was slightly more encouraging and heroically more compassionate. That second doctor was able to perform the surgery and re-attach everything properly and Maione managed to beat the cancer relatively unscathed.
With his new lease on life, Maione raised a family with his wife. Thirteen years passed before he learned of his genetic disorder -- after his mother urged him to get tested. Two years after that, the colorectal cancer was back. While his two cancer diagnoses and surgeries were harrowing experiences, Maione says they were nowhere near as traumatic as having to sit down with his 18-year-old son while a geneticist told him he had inherited the Lynch mutation from his father.
"We scheduled colonoscopies the same day. My kids and I don't fish together anymore. My son and I have father-son colonoscopies. So we purge together, we go to the hospital together and he has his scope first. The first time he was afraid. He didn't know what it was going to be like. They put the IV in. I got to lay in the bed next to him and hold his hand … telling him it's going to be okay."
During his second bout with cancer, Maione again encountered an assortment of villains and heroes in his treatment regimen. He recalls one such moment following his colon surgery in 2007. He was deep into a sort of endless hospital captivity of the recovery cycle. His digestive system had stopped working, he was subsisting on ice and IVs, he was feeling weak and depressed. His room smelled bad. He hadn't seen his surgeon recently, until one day, while dutifully shuffling along the hallway feeling like a geriatric patient, Maione spotted the doctor at the nursing station.
"I catch his eye. He turns and he walks towards me, comes down the hallway. He says to me, 'Dennis, how you doing?' I look at him like I'm going to die. I said, 'I just want to get out of here, doc.' He puts his hand on my shoulder, and he says to me, 'It's going to be okay." Maione believes that simple caring gesture of empathy did as much healing as the surgery.
"Best surgeon I ever met," Maione says. "Anybody could have cut me. Anybody could have taken the tumor out, but he did something there, something that made him the hero for me."
In contrast, Maione can point to several dispiriting interactions over the years with other doctors who've treated him. Following his second surgery in 2007, Maione's oncologist wanted him to go on oral chemotherapy just to kill off any cancer cells that might still be floating around his body. But by then his wife and friends, including an epidemiologist, had been combing through medical journals digging for information about Lynch syndrome. They made an alarming discovery. A Canadian study published in the New England Journal of Medicine reported that people with Stage 2 cancers, who have Lynch, actually do worse if they have adjuvant chemotherapy than if they don't.
Naturally, Maione and his wife brought the new research to his oncologist's attention. He immediately brushed the report off as not clinically relevant.
"No matter what we did, what we got was, 'Talk to the hand," Maione recalls.
"I didn't want to be my own oncologist. All I wanted was somebody to talk to me like I had some sense, like I had some clue, like I could read, like I could look at charts and see that five-year survival rates were different, and I wanted to talk to somebody. Not a chance. Wasn't happening."
Frustrated, fearful and conflicted, Maione resigned himself to taking the chemo pills. But his wife continued to research the medical data and found more articles that raised more questions. On their own, the couple discovered there was a hereditary cancer group at Princess Margaret Hospital in Toronto. Once again, Maione's oncologist saw no point in making contact. It took some doing but Maione got the referral he needed, and the funding to fly to Toronto. A doctor there said, if it was him, he sure wouldn't be taking the chemo. That was enough for Maione. He stopped the chemotherapy. And he drew some lasting impressions about his oncologist along the way.
"I could get chemotherapy. I could get follow-up every six months, every year. I could get CT scans. I could get all of those things, but I couldn't get engagement," Maione says.
"That, for me, made him a villain. It wasn't about expertise. It wasn't about treatment. It was about him engaging me as a human being with some sense for myself, for some sense for who I was and what my body was like." It's in the interest of getting the empathy message across, that Maione joined Patients for Patient Safety Canada a few years ago.
"I can talk to people. I've been able to walk a couple of people through the experiences that I had, but my area of reach might be a hundred or two. With Patients for Patient Safety Canada, the reach is bigger. Each of us who has a story can tell a story to a wider audience, nationally, perhaps even bigger than that."