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When Selena Randall was diagnosed with breast cancer in 2018, it didn’t come as a surprise. She had found a lump in her breast, so she knew a diagnosis was possible.
“Now what?” is the question that kept running through her mind.
To find an answer, she did what any reasonable person with an internet connection would do: she asked “Dr.” Google. While she wouldn’t necessarily recommend this now, she managed to sift through the disheartening statistics and horror stories to find a resource that helped ease her mind.
She ended up on CancerConnection.ca, an online community sponsored by the Canadian Cancer Society. It provided her with a place to ask questions and chat with people who understood what she was going through.
“It felt like I had just been given a great big hug,” says Randall.
Peer support groups and forums like CancerConnection.ca are an invaluable resource for people living with, and beyond, a cancer diagnosis. They create a space to celebrate successes and mourn losses with people who “get it.” They’re also a place to discuss a topic that is often left out of conversations between patients and health care providers — complementary therapies.
The Canadian Cancer Society says many people living with cancer use complementary therapies alongside curative treatment to help cope with side effects and improve their quality of life. A study published in Integrative Cancer Therapies suggests over 80 per cent of people living with cancer have used a complementary therapy during or after treatment.
There isn’t a definitive list of what is considered a complementary therapy, but the National Cancer Institute refers to five main categories: mind-body therapies, whole medical systems, biologically-based practices, energy healing, and manipulative and body-based practices.
Many of these therapies can be used to manage the potentially debilitating side effects and complications associated with life-saving treatments, but they aren’t well-integrated into our health care system. Despite ample research supporting the efficacy of many complementary therapies, health care providers often lack the knowledge and resources required to confidently discuss them with their patients.
This leads people like Randall to become advocates for their own well-being and find the therapies they need on their own.
The year following Randall’s diagnosis was punctuated with appointments, scans, and treatments.
Treatment options for breast cancer depend on a number of factors, including the type of cancer you’re diagnosed with and how far it has progressed. Randall was diagnosed with triple-negative invasive ductal carcinoma, which is a particularly aggressive form of cancer.
“My treatment [options] were a little limited, but we hit it hard with a lumpectomy, sentinel lymph node removal, chemotherapy, and radiation,” says Randall.
Lymph nodes are a part of the immune system that help defend against illness. There are clusters of them scattered throughout the body, including the neck, abdomen, and underarm — you might feel the ones in your neck swell up when you have a cold.
Breast cancer is most likely to spread to the lymph nodes in the underarm, so it’s common for patients to have a sentinel lymph node removal, where a few key lymph nodes are removed and checked for cancerous cells. This can help the medical team decide how to proceed with treatment.
One of the complications Randall experienced after having a sentinel lymph node removal is called axillary web syndrome. Axillary web syndrome refers to the development of a web of tight, cordlike structures that begin at the underarm and can extend as far as the palm of the hand. Research isn’t clear on why this happens — some experts believe it is the hardening of connective tissue as a result of the trauma of surgery.
What’s clear is the impact — the cordlike structures associated with axillary web syndrome can cause pain and limited range of motion in the affected arm. This can make everyday tasks, like washing your hair, difficult to accomplish.
When Randall spoke to her oncologist about it, her concerns were initially overlooked.
“I showed her the ropes that I had down my arm. It was very tight, it was very painful, and it didn’t look right. And she said, ‘Oh, well, you know, you didn’t have enough lymph nodes removed to have that. It can’t possibly be axillary web syndrome.’ And yet it was,” she says.
Randall advocated for herself and was referred to the Breast Health Centre, a Shared Health clinic that offers breast health services to Manitobans. She met with a certified lymphedema therapist who was trained in managing the complications associated with having lymph nodes removed, such as axillary web syndrome.
“[My doctor] did give me the referral, but she clearly didn’t know anything about what the treatment was like or how many treatments I’d need. It wasn’t her lane at all,” says Randall.
This is likely because axillary web syndrome hasn’t been well studied, according to a systematic review published in Journal of Clinical Medicine. This review goes on to describe the promising outcomes of manual therapies like myofascial release.
Myofascial release is a type of massage therapy where a practitioner identifies stiff areas of your myofascia, which is the connective tissue surrounding and supporting the muscles in the body. This complementary therapy aims to stretch the rigid tissues to reduce pain and increase mobility.
Myofascial release helped Randall with the pain and tightness caused by axillary web syndrome. The therapist recommended she continue with massage therapy, which she still does on a monthly basis.
“[My massage therapist has] really helped with dealing with scar tissue and maintaining the mobility in my shoulder and keeping things loosened up. If you’re not on top of it all the time, the scar tissue just stiffens,” says Randall.
Massage therapy has benefits beyond the treatment of complications like axillary web syndrome — it has been shown to be beneficial for the treatment of pain, anxiety, depression, and fatigue.
Despite its benefits, massage therapy isn’t covered by Manitoba Health. Randall didn’t have to pay for her initial appointments with the certified lymphedema therapist, but her monthly massages cost her $110 a session. Randall’s private insurance covers her massage therapy, but for people without insurance, this therapy can be cost-prohibitive.
A study published in the journal Health and Quality of Life Outcomes discussed how breast cancer survivors with a higher income reported better quality of life than those with a lower income. Could the inability to access complementary therapies that reduce pain and improve mobility be a contributing factor?
Every Friday at 6 p.m., Pilates Manitoba’s Corydon studio is reserved for a class you won’t find on their regular schedule. As the participants trickle in, a passerby might notice a pattern if they were to look in from the busy avenue — one woman’s silver hair is highlighted with a shock of pink; another is dressed in a neon pink track jacket and pink-ribbon-printed tights.
What connects these women isn’t their love of pink, but their experience with breast cancer.
Allison Minkhorst, dressed on-theme in a salmon-coloured polo, joined the class after she was diagnosed with stage two invasive ductal carcinoma in 2010. Minkhorst had been doing Pilates for years, but when her instructor, Ruth Baines, heard about her diagnosis, she invited her to a group specifically for breast cancer survivors.
The benefits of the class are twofold — participants are able to connect with other breast cancer survivors and use the low-impact exercise class to manage the complications of their treatments.
For Minkhorst, Pilates helps her cope with the lymphedema she experiences in her right arm as a result of having lymph nodes removed.
One of the lymphatic system’s roles is to maintain the levels of fluid in the body by draining it out of the body’s tissues. If the drainage of fluid is blocked, it starts to accumulate. This causes swelling in the affected area, known as lymphedema, and can result in pain and restricted range of motion.
Minkhorst wears a compression sleeve daily to prevent fluid from accumulating in her arm. She works in a daycare, and the sleeve can impact what she’s able to do with the kids.
“If it’s 30 degrees outside, and I have to wear my sleeve, I can’t go for a walk with the kids like I’d normally do,” she says.
Historically, the standard of care for breast cancer survivors was to avoid upper-body exercise, as it was thought to increase the risk of lymphedema. Canadian sports medicine specialist Don McKenzie debunked this myth by developing and studying a dragon boat racing team for breast cancer survivors. Through his research, he discovered none of the women developed lymphedema — in fact, upper-body exercise, like Pilates, has been shown to lower the risk.
Before she moved to Winnipeg, Ruth Baines taught cardiac rehabilitation classes in Vancouver. She found meaning in working with people who survived a life-threatening diagnosis. It helped them — and her — see the world in a new way.
After moving to the Prairies, she wanted to find similarly meaningful work. So, when one of her Pilates students asked her if she’d run a class for breast cancer survivors, she was instantly on board.
“I thought, ‘Oh, thank you.’ I get to work with people again who have looked death square in the eyes, looked at their own mortality and have said, ‘I’m okay. I can still live, even though I’ve had this terminal illness in my face,’” says Baines.
Over the years, she has learned the importance of movement during and after breast cancer treatment.
“You want to encourage people, post-surgery in particular, to restore as much full range of motion through their shoulder girdle as they can. The research has shown that the sooner you can get back into full range of motion, the better quality of life you have long term.”
Unfortunately, fitness options geared toward breast cancer survivors are limited. Pilates Manitoba’s Corydon studio can only accommodate six students, which has prevented Baines from opening the class to the public.
The Wellness Institute, a medical fitness facility affiliated with Seven Oaks General Hospital, offers a free exercise program aimed at helping breast cancer survivors manage their lymphedema. However, the program is only eight weeks long. Once it’s over, attendees must find other ways to stay active.
Minkhorst says this isn’t as easy as you might think.
“There are limitations when you have surgery or radiation. You know, your body changes. So, when you go to a regular fitness class, they don’t understand when I can’t do an exercise or put my arm a certain way, or I can’t put my leg over my head anymore or whatever it is,” she says.
Minkhorst feels lucky having found Baines’s class as she tailors it to the needs and abilities of her students.
“I don’t think I could have done a regular class, per se, after having gone through this journey.”
Dr. Lynda Balneaves is an associate professor in the College of Nursing at the University of Manitoba. Her research focuses on the use of complementary and integrative medicine by people living with cancer.
She believes further research and improved education are the key to improving access to complementary therapies.
In addition to her work at the university, Dr. Balneaves is a member of the Society for Integrative Oncology, a non-profit professional organization that advocates for an integrative approach to cancer care. This means using evidence-based complementary therapies alongside conventional treatments to improve the health and quality of life of people with cancer.
Health care providers don’t make decisions on a whim — they rely on high-quality research to direct the care they provide. That’s why a part of the organization’s work is encouraging further research into complementary therapies.
“Many of our members are researchers themselves. They’re highly engaged in doing the clinical trials and the high-quality research that’s really needed to show if these therapies are efficacious, if they work, and if they are safe, especially for people living with cancer,” says Dr. Balneaves.
Even when the research does exist, it can be overwhelming for providers to take the time out of their busy schedules to read and evaluate it. That’s why the Society for Integrative Oncology has been working on developing clinical practice guidelines that outline which therapies can be used alongside conventional cancer treatments. Their most recent publication was focused on the role of complementary therapies in managing cancer-related pain.
Conducting this research and developing these resources is essential as there is plenty of pushback in the health care field on the use of complementary therapies.
“I’ve been standing in front of an audience of 500 people yelling at me about what a waste of money and time this research is. And I’m like, you can’t have it both ways. You can’t yell at us that there’s no evidence and brush off [these therapies], and then yell at us when we do the studies,” says Dr. Balneaves.
She attributes this mindset to a lack of education.
In a study of health care providers at CancerCare Manitoba, only ten per cent of respondents said they had received education in complementary medicine. This might lead health care providers to believe there is no evidence to support the use of complementary therapies.
According to Dr. Balneaves, the opposite is true.
“There’s a stunning amount of evidence — particularly around mind-body therapies — that shows they can be effective in symptom management and improving people’s quality of life and mental health,” she says.
Most of the providers in this study said they rarely asked their patients if they used complementary therapies, which they attributed to a lack of time and insufficient knowledge. One provider in the study was quoted as saying, “If you don’t know the answers, you just don’t bring up the question.”
“They’re so focused on just trying to [provide] the evidence-based therapies that they’re trained in. The last thing they want is to have a 30-minute conversation about a bunch of therapies that they know nothing about,” says Dr. Balneaves.
This can have serious impacts on the health and wellbeing of patients.
Dr. Balneaves offers the example of St. John’s wort, an herbal supplement used as a natural treatment for depression and anxiety. The problem with St. John’s wort is it can cause medications, like chemotherapy, to clear from the body faster than they’re supposed to. This means the chemotherapy has less time to affect the cancerous cells, which can result in the cancer being undertreated.
Proper assessment of complementary therapies can help health care providers prevent these dangerous outcomes from happening, but Dr. Balneaves says it can also help identify therapies that patients can use to manage the physical and psychological impact of their treatments.
“Sometimes, we see a patient and it’s like, my God, you’re rocking this chemo, your immune system is doing amazing, you seem to have your head together. And you find out that they’re seeing a naturopath, and they’ve changed their diet, and they’re doing an exercise program. That’s important for us to know,” she says.
Dr. Balneaves says the combination of research and education has the potential to eliminate some of the barriers faced by people who try to access complementary therapies.
“As more evidence comes out, we’re starting to see insurance companies that are willing to cover things like acupuncture, or chiropractic or massage if there’s sufficient evidence that it will help with a certain condition. Maybe we’ll, you know, prevent people from starting to use things like opioids, that kind of come with their own negative health effects.”
It’s been almost four years since Selena Randall completed her cancer treatments, and she hasn’t had a recurrence since. She still spends time in peer support groups, but now it’s in a mentorship role — it gives her the opportunity to return the support and care she received when she was first diagnosed.
“Knowing you’re not alone, and that there’s someone you can reach out to, is just huge,” she says.
Randall has also co-founded Winnipeg Breast Cancer Survivors, a Facebook-based support group for people who are living with, or have survived, breast cancer.
She says this group has been a place to share information about what to expect during and after treatment, and how to manage side effects and complications.
One group member found acupuncture to be useful for treating neuropathy, a nerve condition caused by certain chemotherapies that can result in tingling and numbness in the hands and feet. She shared her experience with the group in hopes of helping others in the same situation.
If patients and their health care providers were having open, meaningful conversations about complementary therapies, patients would be able to run their complementary therapy plans by their medical team to make sure it wouldn’t interfere with their curative treatments. Patients also wouldn’t have to rely as much on groups like Winnipeg Breast Cancer Survivors to find the resources they need. Instead, these groups could focus on offering peer support, which remains a crucial part of navigating a cancer diagnosis.
In the coming years, evidence-based complementary therapies will become increasingly important as more people look for ways to live well during and after cancer treatment. The number of new cancer cases will continue to rise due to our aging and growing population and longer life expectancies as a result of advances in treatment and technology.
It is up to our health care system to ensure quality of life beyond remission — and the complementary therapies that support it — is valued alongside curative treatment.