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Jennifer Bell sitting on couch
Jennifer Bell, who underwent a stem cell transplant for multiple myeloma, says one of the keys in her recovery was understanding that it was “normal” for all of the physical trauma she experienced to have an impact on her emotional state. (Photo: Courtesy Jennifer Bell)

Jennifer Bell still remembers how stunned she was by her cancer diagnosis.

It was the fall of 2015. After more than two years of random rib fractures that her doctor was convinced signaled osteoporosis, Jennifer learned the culprit was actually multiple myeloma, a type of cancer that affects bone marrow, alters your blood's plasma cells and often causes broken bones.

"You go into the whole shock of 'What? I have cancer?'" she recalls. "I didn't even know the name of this type of cancer, and now I feel that if I don't start treatment in the next nano-second I'm going to die from it."

So began an arduous journey. Physically, it lasted nearly 18 months, through chemotherapy, a stem cell transplant, a "brutal recovery" and, finally, remission. That's where she remains today.

Mentally, Jennifer says, the healing is still very much a work in progress. The impact of a life-altering diagnosis, suddenly confronting one's own mortality, enduring a drug regimen "where you're just trying to get through today, then deal with tomorrow," all take their toll on the psyche, she says, a reality that can translate into depression, anxiety and feelings of helplessness long after cancer treatment ends.

"Having cancer brings up a lot of other things in your life that you wished you'd solved or done differently because you're constantly being bombarded with the thought that you're going to be dead," Jennifer says. "It's a roller-coaster ride, emotionally. I'm going to die. No, I'm going to live."

UHN Department of Supportive Care

Managing Cancer and Living Meaningfully (CALM) is a clinical program within the psychosocial oncology division of the Department of Supportive Care, which also includes the divisions of palliative care and rehab and survivorship. Its stated mission is: "To provide and promote supportive care for all patients with cancer and their families, from the time of diagnosis until such care is no longer needed."

'Huge to have someone validate my feelings'

It wasn't until early last year when Jennifer began meeting with Dr. Gary Rodin, Head of the Department of Supportive Care at Princess Margaret Cancer Centre, that she realized all of these feelings were "normal" – that going through physical trauma would, of course, impact her mental state.

"To me, that was huge, to have someone validate my feelings," she says. "It's about knowing that mental health, and stabilizing mental health, helps you heal.

"That's why it was important for me to get treated for my mental health. I knew it would help me heal."

Dr. Rodin, who is also Director of the Global Institute of Psychosocial, Palliative and End-of-Life Care (GIPPEC), says depression and anxiety are common expressions of emotional distress in patients with advanced cancer, and they often go undetected and untreated by medical practitioners.

But Dr. Rodin and his colleagues are changing that – at the Princess Margaret and around the world.

Managing Cancer And Living Meaningfully (CALM) is a program developed at the Princess Margaret and is now being delivered internationally by GIPPEC in the form of training workshops, including one last month at the University of Toronto for clinicians and researchers from 15 countries.

Want CALM to be a global standard of care

"I don't believe psychosocial care is near as well developed as other forms of cancer care," Dr. Rodin told his audience in one of the sessions during the three-day workshop. "And, that's on us.

"We haven't had enough research. We haven't done enough advocacy."

The concept of CALM is straightforward – to help patients with life-threatening cancer, and their caregivers, manage the practical and profound problems associated with advanced disease. It consists of six individual sessions over a three-month to six-month period with specially-trained therapists from a variety of disciplines, including nurses, doctors, social workers, psychiatrists and psychologists.

"What could be more basic than a human conversation between two people about a serious matter," says Dr. Rodin, who offered the first CALM workshop in 2011.

"We want CALM to be a standard of care throughout the world."

To date, more than 1,000 clinicians from 20-plus countries have attended a CALM workshop.

"Psychosocial care is being taken much more seriously than ever before," says Dr. Rodin, noting that it is "one of the most cost-effective forms of cancer care."

Dr. Gary Rodin at the podium at CALM workshop
Dr. Gary Rodin, Head of the Department of Supportive Care at Princess Margaret Cancer Centre, told the recent CALM gathering that while psychosocial care is not as well developed as other forms of cancer care there is a growing body of research proving its effectiveness. (Photo: Visual Services, UHN)

There's growing evidence-based research showing the positive impact of CALM. Dr. Rodin at the 2017 American Society of Clinical Oncology Annual Meeting presented findings of a study of 305 patients at the Princess Margaret – those in the CALM group reported less severe depressive symptoms than the control group at three months, and the difference between the two was even greater at six months.

It also showed fewer of those in the CALM group who did not have depressive symptoms at the start of the study had them at both three months and six months, compared to those in the control group. The CALM group also reported greater preparation for end of life, greater opportunity to talk about concerns about the future and feeling less frightened than the control group who did not engage in CALM.

The findings of the CALM study were published last month in ASCO's Journal of Clinical Oncology.

Canada, Germany and Italy are leading the way in research in psychosocial cancer care with clinical research programs now emerging in other countries, including China, the United States, the Netherlands, Australia, Chile, Portugal, the United Kingdom and South Korea.

"Our oncologists and other cancer specialists are only able to spend a minute or two with patients," says Dr. Jungmin Woo, clinical psychologist and psychotherapist at Kyungpook National University School of Medicine in Daegu, South Korea. "So, patients are very satisfied with psychotherapy because when they meet with us we'll spend 45 to 90 minutes and share so much about their emotions and suffering."

Dr. Woo, who attended the CALM workshop U of T last month, says "through this framework we can implement successfully" the psychosocial cancer care already happening in a less structured way.

Need goes beyond cancer to all diseases

Natalie Bauereiss, a PhD student at the University of Ulm in Germany, says that CALM "provides a safe environment" for patients to discuss with caregivers and healthcare providers topics that have sometimes been stigmatized or considered too sensitive for clinical conversation.

"CALM is a way to more systematically train people to deliver things in a structured way that's already implicitly being done in cancer care," Natalie says. "It's a good framework to implement it in many countries across the world."

Jennifer Bell, who still sees Dr. Rodin regularly, considers all of this "an awakening." Everyone – patients, medical practitioners, caregivers – need to better make the link, she says, between the importance of mental health in recovery from disease, not just cancer, but all types of disease.

"That serious bodily injury should cause the stability inside your head to waver, seems obvious," she says. "But, generally, we haven't acknowledged that the person who has cancer, or major heart surgery, or other types of injury, might need mental healthcare to go along with their physical healthcare.

"But for me, it's simple: if you want to get your cancer better, you must deal with your emotional health, as well."

Group shot at CALM Workshop
The CALM training workshop and Leadership Meeting at the University of Toronto last month was attended by clinicians and researchers from 15 countries. (Photo: Visual Services, UHN)

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