Getting a cancer diagnosis shocks people, says Dr. David Bell, a urologist at the QEII Health Sciences Centre.
“The word cancer is terrifying to patients. After you say that word, they don’t hear much and they just want to hear, what is my treatment? And what is my outcome?” he says.
Doctors can fall into that same trap of the immediate. “We, of course, tend to be a little more medically focused and it’s quite easy sometimes to miss the social impact of the disease,” he says. “There’s no doubt traditional medicine focuses on very narrow outcomes of survival and disease recurrence and progression.”
And so many of the 740 men diagnosed with prostate cancer each year in Nova Scotia leave the office badly rattled, thinking about radiation or surgery and wondering what the future holds.
A new research project is taking a unique approach: it’s looking at men’s overall quality of life and general health. “Treating cancer is a bit like running a marathon. It may be reasonable to do a little training beforehand,” Dr. Bell says.
Dr. Gabriela Ilie is a QEII research scientist and Dalhousie University’s Endowed Soillse Research Scientist in Prostate Cancer Quality of Life Research. She’s pioneering a new perspective by getting patients to talk about the broader issues involved in living life after a prostate cancer diagnosis and the various side effects of treatments. The men complete an ongoing, online survey about their quality of life, giving her data to design better patient education and empowerment programs.
Dr. Illie says “prehab” is crucial. Instead of leaving the doctor’s office reeling from the cancer diagnosis, she wants men to leave with concrete goals they can begin working on right away and prepare themselves for what’s coming ahead, so they have the best chance of recovery and best possible quality of life.
“From day one, we’re going to give you the best diet in light of your diagnosis, the best form of exercise, how to stay socially connected and remain authentic, how to meditate and become mindful of your negative thoughts, how to change your negative thoughts and how to navigate the medical system,” she says. “We’re going to empower you with the knowledge and practice of what you need to enter this life transition.”
She says in the Maritimes, 80 per cent of women diagnosed with breast cancer attend support groups; 80 per cent of men diagnosed with prostate cancer don’t.
“With that comes isolation, increased anxiety, depression, mental health issues, relationship dissatisfaction. When we asked men with prostate cancer, what’s your number one concern? Almost 70 per cent of them said intimacy and sexuality.”
Starting in the fall of 2018, a trial group will do a 30-day program focused on improving their overall quality of life so they’ll be fit to run their cancer journey marathon.
Dr. Rob Rutledge, a radiation oncologist at the QEII, sees the need for such a change. “The guys are really suffering in terms of mental health, urinary problems and so on,” he says. “Being able to turn the survey data into programs that can actually empower the patient and their families is really exciting.”
Men dealing with prostate cancer often find themselves also dealing with erectile disfunction, but can think it’s a relationship problem, not a physical one. That can spiral into emotional and psychological distress on top of the cancer diagnosis. “It’s not just about delivering physical treatment to the person in front of you. You have to take care of the whole person,” Dr. Rutledge says.
Hal Richman is eagerly helping the doctors with their research. He was diagnosed with prostate cancer in 2003 and took a whole-life approach to treating it on his own initiative. “Take urinary incontinence. For some men it’s treatable, for me, it is what it is for the rest of my life. But it’s how I reframe it. I don’t let it stop me,” he says.
Speaking with Dr. Ilie at a recent conference, Hal was excited to learn other men will be guided onto the path he blazed. He got himself a fitness coach after his diagnosis and forced himself to open up emotionally about the impact cancer had on him.
“Now I see why I’d been having a lot of confusion — I never looked this thing straight in the eye, particularly right after,” he says. “I found it liberating to do so.”
Dr. Ilie hopes the research sets other men free. “How can you fix something that’s not even part of your consciousness?” she says. “Bring it up. Talk about it. You can’t heal what’s inside you unless you open up that gate.”