Lisa Machado is the founder of the Canadian CML Network (cmlnetwork.ca), a national patient support organization based in Toronto, Ontario, Canada. She has been living with chronic myeloid leukemia since 2008. She can be reached at firstname.lastname@example.org.
A clinic in Newfoundland offers survivors help to move forward.
IT WAS ABOUT FIVE years ago that Gerard Farrell, MD, a general practitioner (GP) in oncology, noticed a new trend in treating patients with cancer. With the introduction of biologics and other innovative therapies, people were not only living longer, they were being discharged from care sooner.
“The number of people that we were seeing grew so much that the usual five-year discharge plan became discharge on completion of treatment,” says Farrell, an associate professor at Memorial University in Newfoundland.
“Appointments that used to focus solely on diagnostics started to shift to intense discussions about managing life after cancer. We just couldn’t manage the workload.”
What happened next would push Farrell to begin one of the only GP-run after-care clinics for cancer survivors and those living with chronic cancer in Canada that exists outside of a cancer centre.
“A cancer diagnosis is tough, but living in the ‘after’ can be tougher,” he says. “What does it mean for work, for family relationships, for the future? These are the questions that people need to work through in order to move forward.”
As survivors who were no longer being seen in a cancer centre struggled to find peace in their after-cancer lives, they sought solace from their family doctors, who often didn’t have the time or the expertise to handle their complex physical and emotional issues.
“Family doctors were getting very specific cancer-related questions like how to manage hot flashes induced by (the hormonal drug) tamoxifen,” he says, “but they were also being asked to help patients work through the emotional fallout that happens after cancer.”
Farrell began to worry that patients might slip through the cracks as they faced both physical and huge emotional hurdles to rebuild their post-cancer lives.
Issues like anxiety about recurrence, depression around the physical changes brought on by treatment and questions about how to maintain relationships were deeply affecting the well-being of patients and preventing them from enjoying their cancer-free lives.
“I became very interested,” Farrell says, “in the concept of survival: not just biologic survival, which is important, of course, but how does one survive cancer emotionally, mentally and spiritually?”
The After Care Clinic began in September 2014. Farrell had the needs of his patients in mind, right down to choosing a location. Housed in the Family Medicine Clinic at Memorial University, the facility looks just like any other family practice, a decision made very much on purpose. It’s staffed solely by Farrell, although he hopes to add to his team, either on site or through cooperative agreements with professionals in other locations who would provide care tailored to the needs of this population.
“Everyone experiences cancer differently, but for many, the recurring images of the disease — bald heads and IV poles — that you see at an oncology centre are enough to bring on the old feelings of fear and uncertainty,” he says. “I didn’t want that. I wanted these people to see babies, elderly people and families. I wanted them to see life and the importance of moving on.”
With a patient load of about 300 and growing, Farrell is bursting with success stories. He talks about a young woman he saw after she was discharged from her oncologist’s care. She was consumed with anger about what cancer had done to her life. Someone who had taken pride in being in control, she now felt powerless and unable to focus on anything other than what cancer had taken away from her.
“She would come in every three weeks and say things like, ‘I feel this way because I have cancer,’ even though she had been declared cancer-free,” he says. “We spent a lot of time working through her emotions, exploring the feelings of powerlessness and the ways she could bring a sense of control back into her life. The first time she said, ‘I had cancer,’ and put it in the past, was a big victory for her and for me.”
Many patients also live with the constant fear that, if their bodies betrayed them once, it can happen again; as a result, they become hyper-vigilant about their health.
“So, you come in with a pain in your toe and you’re worried it could be your cancer coming back,” says Farrell. “Well, I’m not laughing. I am also not telling you to stop worrying and saying that you are lucky to be alive. I am looking at that toe and talking about why or why not we should be concerned.”
While worrying about toe pain as a sign of cancer may sound crazy, to many survivors and those living with cancer, it’s not far-fetched. In fact, once you get a cancer diagnosis, anything feels possible. And in some ways, it is. “Uncertainty is big,” says Farrell. “The truth is, once you have had cancer, you are never off the hook. Everyone has heard the stories of the person who was cured, only to die a few months later of another cancer. It happens. The question is how to live despite these stories.”
The answer may lie in creating a safe space like Farrell’s clinic, where fears are welcome, even the seemingly irrational ones. He also sees his clinic as a periodic landing place for survivors and chronic patients no matter how long it has been since their cancer experience.
“The fears and concerns don’t always come right away,” he says. “Sometimes it’s after treatment is long done and the people have settled back into their lives years later that they begin to feel the sense of loss and fear.”
He tells a story of a man diagnosed with bladder cancer. He had been stoic throughout his treatment, taking the experience one day at a time and focusing on getting through it.
When Farrell saw him and his wife years after he was declared cancer-free, he was shocked to hear the man recall very early discussions with his surgeon and oncologist — specific details about the stage of his illness and the prognosis.
“His wife just stared at him, speechless,” says Farrell. “These were things that he had never told anyone, things he had been carrying with him and worrying about for years. People need a place that they share this stuff and hear that it’s OK to feel this way.”
Farrell hopes that his cancer after-care concept catches on in the rest of Canada. In fact, he is working closely with other GPs, non-profit groups and non-governmental organizations to explore ways to expand to other provinces.
“You know how diabetes became a ‘thing’? And HIV? We have multidisciplinary programs in place to help these patients,” he says. “So why not post-cancer care? I think it’s a ‘thing.’ A really big ‘thing.’”