Cancer patients take unnecessary risk when navigating forms of complementary cancer care because of a lacking support from cancer centres

YARDLEY-THUMB

When Stephanie Dobbie became too sick to continue chemotherapy, she began radiation to treat fibrocystic breast cancer. At this time, six years ago, she tried cannabis oil at the recommendation of a friend.  She says that she took three drops every day until she started to feel better.

So when the pathology of her tumours came back clear in 2014, she found out she was cancer-free for the first time in four years.  Although she admits she has no concrete proof, Dobbie believes cannabis oil played an integral role in her recovery despite its controversy.  

“I’ve been told many, many times that cannabis oil kills cancer cells,” she says. “It’s a cure. I’ve fought many people on this. A lot of people don’t believe it’s true.”  This includes many of her friends and family who urged her to avoid alternative treatments. They don’t credit cannabis oil with the same success, she says. Instead, they credit her recovery to conventional approaches like the five surgeries she had to remove the 18 tumours in her breasts.  Although she knows it’s controversial, she still defends her belief in cannabis oil. “I don’t believe my treatments were the reason [I got better] because my treatments made me super sick.”

This year Dobbie was diagnosed with throat cancer after the remission of her breast cancer.  She recalls the horrible feeling of having to break the law to get cannabis oil, the treatment she believes in. “The best thing to do is go back on the cannabis oil, but trying to find it is the hardest thing [because] it’s not legalized and I’m not an unlawful person,” she says.YARDLEY2Stephanie Dobbie updated her Facebook profile picture Oct. 12, 2015 in Calgary, Alta., and reminded others affected by cancer to say “I am Strong! I am Blessed! I am Here! I AM BEAUTIFUL!”
Photo courtesy of Stephanie Dobbie

Dobbie is not alone in the fear and doubt associated with pursuing complementary therapies in Canada. Lynda Balneaves, director of the Centre for Integrative Medicine at the University of Toronto believes that Canadian cancer patients need to be supported in their decisions around complementary treatments. She says the way to address this is through the integration of complementary medicine that incorporates patients’ medical records and charts in care because of the dangers of independent complementary therapies.

Alternative horizons for cancer care

Cancer care in Canada is going through a transformation. Conventional oncology programs are being supplemented with non-conventional therapies such as meditation, exercise, nutrition and natural health products. Proponents argue integrative and complementary methods result in a more wholesome approach to cancer treatment.

Cancer care is no longer only about medical research and therapies, but has broadened its methods to encompass a patient’s quality of life through avenues like self-care and psychosocial approaches. Integrative oncology is not only concerned with the body, but also the mind.

“Integrative oncology is the idea of combining both conventional treatments with complementary treatments,” says Linda Carlson, Enbridge research chair of psychosocial integrative oncology at the University of Calgary and head of the Tom Baker Cancer Centre’s Integrative Oncology Program in Calgary, Alta.

The act of combining conventional treatments, such as surgery, chemotherapy, radiation and hormonal therapy, with complementary medicine offers cancer patients an alternate form of care that is safe and doesn’t leave them vulnerable.  

 “One of the things about complementary and integrative medicine that is unique, is filling a gap that’s not covered by conventional care, is the fact that it’s much more holistic, so there’s an approach that looks at the whole being,” says Dugald Seely, founder and executive director of the Ottawa Integrative Cancer Centre founded in 1978 because of a gap in centres providing well researched and safe complementary cancer care.

“It’s not just the pathology of the disease, but there are elements related to the mental, emotional, how someone is coping, what level of fitness they have, and what they’re eating. It’s looking at the person as a whole being and not separating out the tumour versus the neuropathy versus the nausea and all that,” he says. “That’s one of the appeals that draws people to complementary and integrative medicine.”

Covering all the bases 

At 36-years-old, Melanie Knight was diagnosed with triple-negative breast cancer, a rare form of breast cancer. In 2014, Knight who was no stranger to the medical system because she previously underwent two spinal chord surgeries to treat spinal cavernoma, sought out complementary treatment for the first time.

With the guidance of naturopath Craig Herrington at the Ottawa Integrative Health Centre in Ottawa, Ont., Knight incorporated supplements, fasting, dieting and acupuncture to help her cope with the side-effects after her first round of chemotherapy.

“I’m not a hokey person,” she says. “I don’t believe I got breast cancer because I had a bad relationship three years ago when I first moved to Ottawa. To me it’s the unlucky draw and you can’t kill yourself spending all your time thinking back to ‘what did I do to get breast cancer?’” Instead, she chose to address cancer head on, and pursued complementary medicine with the Ottawa Integrative Health Centre because of the information she received from books and online research.outdoorsMelanie Knight, an active woman in her 30s was familiar to the medical system when she was diagnosed with breast cancer. She says this experience, along with literature about the disease and personal testimonials helped her decide to pursue complementary care.
Photo courtesy of Melanie Knight

The Ottawa Integrative Cancer Centre is a not-for-profit subsidiary of the Canadian College for Naturopathic Medicine, and is one of Canada’s few integrative cancer care options beside the BC Ministry of Health’s Inspire Health centre.

Cancer care is an outlier in the medical system because of the severity of its diagnosis and treatment. “When you get a cancer diagnosis you still innately wonder, ‘Will I survive this? Am I going to die?’” says Lynda Balneaves, director of the Centre for Integrative Medicine at the University of Toronto and Canada’s leading integrative oncology researcher: “People are also looking for hope. I have to remind practitioners that sometimes you have a patient sitting next to someone in the chemo room and that person doesn’t show up the next week. While we’ve done a fabulous job with new pharmaceuticals, with some of our new surgical techniques and our radiation to enhance survivorship around cancer, there are people that still die. And people want to — I’ve had someone say — ‘cover all the bases’. They want to maintain hope. They want to try everything that might be possible to increase the odds that they’re going to survive.”

Fear and anxiety are the two primary emotions individuals undergoing a cancer diagnosis deal with. “Once they have a diagnosis, there’s this really uncomfortable waiting time,” says Anne Pitman, yoga therapist and spiritual care coordinator at the Ottawa Integrative Cancer Centre. “The rug is just pulled out from under them and that’s a really big time for fear and anxiety.”

 

 

Motivations for seeking integrative and complementary therapies

While complementary medicines are touted in the media and on the Internet as potentially being cancer cures, this social movement in healthcare has shifted the power paradigm from a reliance on conventional methods to non-conventional therapies. This quiet and sweeping movement places more control in the hands of cancer patients. Integrative cancer therapies enable patients to make decisions regarding complementary medicines that can aid in their recovery alongside conventional care.

Before this social movement of integrative oncology that began when Harvard University published a study on integrative therapies in 2008, people were treated simply as bodies, says Shane Sinclair, assistant professor and cancer care researcher with the department of nursing at the University of Calgary.

“People felt before [integrative care] that they came in and got their chemotherapy or their radiation, went home, and all the other factors they’re left with in terms of the impact and the meaning this has on their life and depression wasn’t seen as the core business of cancer care,” says Sinclair who now researches the benefits of compassion in cancer care. “I think over the last 30 years with a lot of hard work people have gotten that back on their radar, in the forefront.”

When Pitman’s husband was diagnosed with cancer 12 years ago, she developed a strong familiarity for the emotional context of cancer that extends beyond the medical treatment and care to the emotional roller coaster that can present itself after a cancer diagnosis.

“Our culture doesn’t really understand support,” says Pitman. “I don’t just see the cancer in people. It’s the whole person.”

“Many patients are using these therapies before their cancer diagnosis, whether they’re looking at their diet, they’re exercising, they might be taking some natural health products to prevent a cold,” says Balneaves.

Many people with or without cancer have a reliance on natural products or take a more holistic view to medicine. According to World Health Organization complementary medicine is often an underestimated part of health services.

At the 2013 International Conference on Traditional Medicine for South-East Asian Countries, Dr. Margaret Chan, director-general of World Health Organization said complementary or alternative medicines have a long history of international reliance with millions of people using herbal medicines or traditional treatments as their only source of health care.

The cultural diversity of Canada’s population has also contributed to the demand for complementary and integrative care, says Balneaves. “Particularly for populations coming from Asia many of those individuals [with cancer] will go back to Asia to receive treatment and receive therapies… They will often go back and receive treatment from a traditional practitioner because of their cultural beliefs. Many individuals have used these traditional therapies as their primary source of healthcare for most of their lives and with cancer they know they need conventional care, but that doesn’t mean that they’re going to give up their primary source of healthcare that they’ve had in their life.”

Many individuals have used complementary medicine throughout their lives to enhance their overall baseline health, and when confronted with cancer treatment side-effects, such as fatigue, sleep difficulties, pain, issues with cognitive functioning known as “chemo-brain” or “chemo-fog”, anxiety and depression, people will incorporate these complementary treatments to help manage these symptoms.

“We have a society that’s really saying ‘take responsibility for your health’, and complementary medicine is one way that patients can be very independent in selecting a therapy or engage in a practice to support their well-being,” says Balneaves.

The dangers of complementary therapy

The risk factors in combining complementary medicine with conventional treatments falls on cancer patients and their families who are often burdened by the plethora of untested or reviewed sources of information pertaining to complementary care. This leaves patients vulnerable to an unnecessary risk that Canadian medical centres need to address.

“The research doesn’t 100 per cent cover all the potential interactions, but that’s the main reason why a lot of oncologists will say to patients ‘no, just don’t take any of those supplements while you’re doing chemo’ because there may be a potential for interactions but it’s not well understood,” says Carlson.

Seely says many patients are still reluctant to disclose to their oncologist that they are using these therapies because of the political divide between conventional and non-conventional medicine in Canada and the stigma attached to the term complementary.

In Canada, this power paradigm has led to the concerted effort to stifle the advancement of complementary and integrative medicine by cuts to funding, targeting supportive care programs

In recent years integrative health providers have closed their doors due to economic conditions in Canada. In 2013, Mount Royal University in Calgary, Alta. closed the Integrative Health Institute due to waning funding.  This was the first post-secondary program in the country dedicated to the advancement complementary and integrative health education.

But 10 years before the Integrative Health Institute’s closure, the Tzu Chi Institute for Complementary and Alternative Medicine closed its doors in Vancouver, B.C. The institute, primarily dependent on the B.C. Ministry of Health’s funding, redirected the institute’s grant to focus on supporting acute care.

“The lack of public funding for research is one barrier,” says Seely. “Much of the research that is geared towards healthcare is driven by industry funding and there’s very little industry funding that’s going to support complementary medicine research because it’s very hard to monetize it. There’s no particular patent you can take out on a (Complementary and Alternative Medicine) CAM therapy and that’s a huge limitation.”

Lack of regulation puts patients at risk

Now, cancer patients are the ones who suffer because of this quarrel, and there has been recent debate about Health Canada’s minimal review of natural health supplements, such as herbal remedies and vitamins. According to a CBC investigation, the government’s oversight on the quality of these products is a safety risk for consumers. They also discovered that “many of the most popular supplements don’t live up to their claims.”

Produced by: Amara McLaughlin and Jesse Yardley

With cancer patients more likely to use natural health products, they are vulnerable to the safety concerns and health problems that a negligent system of certification causes.

“Patients need to be supported in their decisions around these therapies,” says Balneaves. “It doesn’t matter which paradigm you come from, be it the conventional or the complementary. We need to be supporting patients in making these decisions. We need research to be part of that process so we can actually have good evidence to share with them.”

“You can’t ignore this,” Balneaves says. “This is a phenomena that exists and the majority of patients are using these therapies, and you need to be asking questions. You need to be assessing for use, documenting it, and you need to have that conversation with them about the therapies they’re using.”

The first step forward for complementary and integrative medicine in cancer care is coming back to a patient-focused approach which entails supporting them in their decision-making regarding what treatments are best suited for their diagnosis.

Please visit choosingtreatment.wordpress.com, a Calgary Journal exclusive look at integrative oncology in Canada, with first-hand accounts of how cancer survivors made their decisions around different conventional and non-conventional treatments.  

Thumbnail courtesy of Melanie Knight 

amclaughlin@cjournal.ca, jyardley@cjournal.ca 

The editor responsible for this article is Caroline Fyvie, cfyvie@cjournal.ca.

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