“I used to really like mindfulness,” said a woman in my evening cancer support group last week, “but now when I try to do it, I just cry.”
On the Zoom screen, I saw several other women nodding in agreement. The speaker had recently gotten bad cancer news and was facing a difficult decision. This change in her relationship to mindfulness seemed important to her – and to some of us. But the group moderator, hired by a cancer support organization, didn’t acknowledge it. She moved on, instead, to a different topic.
This was the first cancer support meeting I’ve attended in the past year as I’ve managed a diagnosis of Stage 2 breast cancer. Until now, I’ve been preoccupied with appointments and looking after my family during rolling lockdowns. For those of us who have had cancer in 2020 and 2021, there is no experience of our care that hasn’t been affected by the pandemic. In the first wave, some cancer procedures and diagnostics were delayed as patients lived with the fear that by the time they were treated, it could be too late. As the system developed capacity, we received our treatments in a more timely way but now with the twin fears that rising community transmission could disrupt our treatments – or that we ourselves could contract COVID-19, ending our treatments and potentially our lives. Today in Ontario, some cancer patients are facing the scenario we have all feared: procedures once again delayed and a threat level at an all-time high as providers race to vaccinate us all.
Back at the cancer support group, our facilitator was leading us in a guided mindfulness exercise. “Greet the universe as a benevolent friend,” she intoned. “Ask the universe to bring you what you want and need.”
This doesn’t feel right, I thought.
Mindfulness, as it is interpreted in the contemporary Western world, is not only a relaxation technique: it is also a multi-billion dollar industry that has made its way into many of our schools, churches and medical institutions. According to David Kortava, writing in Harper’s, “In 2017… 15 per cent of American adults engaged in ‘mental exercise to reach … mindfulness.’”
Ideas about mindfulness are often present in the world of cancer care as well. The Beth Israel Medical Center in Boston offers a list of “Mindfulness apps for cancer patients” and the Memorial Sloane Kettering Cancer Center, also in the U.S., offers online “guided meditations led by (an) MSK mind-body therapist.” One 32-minute video on the centre’s menu promises to “help you soothe anxiety and uncomfortable sensations in your body … especially helpful if you’re receiving monoclonal antibody therapy.” MSK also offers mindfulness videos for sleep, body scans and calming anxiety. My hospital, part of the University Health Network, currently has its mindfulness classes on pause but offers online relaxation guides and “yogic breathing” exercises. “Use the breathing techniques from the videos to help you experience the power you have to help your own body,” the website reads. “Recent scientific studies on yoga and cancer show that yogic breathing exercises may help.”
I decided to look into scientific evidence on whether yogic breathing can help with cancer and whether there are any adverse effects from meditation, yoga and mindfulness for cancer patients. Mainly, I wanted to understand the ways in which mindfulness/meditation is enhancing – or possibly supplanting – the broader purpose of cancer support groups.
While Cancer Research UK notes that “there is no evidence that meditation can help to prevent, treat or cure cancer,” it is less clear how much mindfulness can help with treatment-related issues such as stress, cognitive decline and sleep problems. A 2019 Cochrane Review of research on mindfulness‐based stress reduction (MBSR) for women with breast cancer noted problems of bias in much research, concluding that “MBSR may improve quality of life slightly at the end of the intervention but may result in little to no difference later on.” A 2019 research review of studies on mindfulness for managing cancer pain states, “The evidence does not yet support that mindfulness interventions should be a mainstay treatment for cancer pain.” There are some interesting new studies on using mindfulness for cognitive issues during chemo but they are too small to draw conclusions.
There is growing evidence that mindfulness can sometimes lead to adverse mental health issues such as anxiety, depression and psychosis. In 2020, Acta Psychiatrica Scandinavica published a systematic review of adverse events in meditation-based therapies: “We found that the occurrence of adverse effects during or after meditation is not uncommon,” the authors concluded, “and may occur in individuals with no previous history of mental health problems.”
The problem of adverse mental health outcomes has led to changes in how some institutions present mindfulness meditation. In 2012, leading meditation researchers in the U.K. published a set of guidelines for instructors, addressing risk. In 2016, the U.S. National Institutes of Health issued its own warnings and guidelines. Cancer Research UK notes both the potential mental health benefits and also the risks of meditation programs: “It is important to make sure you use a qualified meditation teacher,” it advises. Likewise the Canadian Cancer Society discusses the benefits of mindfulness alongside its risks, concluding: “Talk to your health-care team if you are thinking about trying meditation.”
How should mindfulness be used with cancer patients? According to Sam Himelstein, a psychologist who works with youth at the Center for Adolescent Studies, it’s best to take a trauma-informed approach to mindfulness in all settings. For Himelstein, mindfulness is “not simply just meditating and ‘calming down,’” as many people think, but a complex process that impacts different people in different ways.
“When I teach mindfulness,” he says, “I’m taking into account all of the things that can potentially come up for (someone) impacted by trauma. If someone has been highly impacted by trauma, they may get really dysregulated if you ask them to close their eyes and meditate.” Himelstein uses the phrase “strike while the iron is cold – not hot” in terms of reaching people when they’re not in a heightened or triggered state.
In the rush to embrace a new trend, cancer centres should be cautious in their claims and practice trauma-informed care that reflects the changing needs of cancer patients, especially right now. More than breathing deeply and asking the universe for help, we patients need tools for advocacy and coping within an overwhelmed health-care system. We also need a supportive space for our feelings.
Back at the support group, as the instructor told us to close our eyes and take deep breaths, I thought about the last time I was asked to take deep breaths. I had just been rolled into the OR, about to disappear into the bright and strange netherworld between life and death known as general anaesthesia. Going through the physical and emotional ups and downs of cancer treatments (or of a pandemic), there are some who can surrender to the unknown with relative ease. Others of us prefer, when we can, to keep our eyes open.