Oncology massage around the world
By Janet Penny, RMT and Rebecca Sturgeon, lMT
A look at Quebec, The Netherlands and Mexico
By Janet Penny, RMT and Rebecca Sturgeon, lMT
In just a few short decades, oncology massage has gone from being unheard of and absolutely contraindicated, to being welcomed by people living with cancer and the institutions that serve them.
All [practioners featured here] are dedicated to spreading the word about the extraordinary benefits that massage can bring during cancer treatment and into survivorship. Their stories are of the unending hours of focus and teamwork that are necessary to ensure oncology massage is not only available, but will become an integral part of cancer care.
Lyse Lussier, L’oncomassage
“Madame Crème” is an innocuous name for the woman who pioneered oncology massage in Quebec, Canada. Lyse Lussier combined an inspired idea with decades of hard work, team-building and powerful dedication to create a province-wide system that offers massage to children and adults living with cancer.
While in her twenties, Lyse moved to the United States (Arborescence, 2020), returning with improved English and a life’s vocation. She had witnessed the power of touch and caring brought to unwell children by the psychiatrist and nurse-massage therapist parents of her host family. Lyse completed massage therapy training in Seattle before returning to her native Montreal.
Leucan, a Québec organization that provides support to families who have children with cancer, had set aside part of their budget to offer support other than financial assistance, emotional help and recreational activities (Leucan, 2019). Lyse’s proposal to offer massage to children in the Sainte-Justine Hospital was readily accepted.
The hospital nurses were early advocates of massage therapy. Their challenge to Lyse was: “If you can get that little boy over there to accept massage, you’re hired.” The boy in question had terminal cancer, no family support and typically expressed himself by yelling and throwing things at anyone who tried to approach him. Lyse entered his hospital room, turned her back to the young boy and offered his roommate the chance to see the “magic cream” that went from solid to liquid in the warmth of her hand. The pleasure the roommate had from the massage was enough to pique the interest of the first boy who excitedly asked to see the “magic cream” and find out why massage seemed to feel so good. Lyse provided massage to him from that day until the end of his life.
Oncology massage made its debut, in Lyse’s words, “between the paint and the wall”. There was no big announcement or fanfare. In fact, it was a full seven years before the hospital administration became fully aware that massage therapy was being offered to their patients. Human warmth and a hand full of lotion, Lyse’s initial way into the hospital rooms of children with cancer, created a demand for massage that could not be ignored once it had been established.
Leucan’s support of massage within Sainte-Justine Hospital spread to welcoming Lyse and her students-in-training to a summer camp for children with cancer. Family members also benefited from the treatments, creating a population of entire families who were learning of the enormous benefits of massage therapy. This was in 1988, the beginning of several decades of forward thinking and hard work that has resulted in oncology massage training of hundreds of massage therapists, and over 70 massage therapists working in hospitals, palliative care centers and client’s homes across Québec. In 2017–18, Leucan recorded 4,660 massages offered to children and their families (Leucan, 2019). Of particular interest is how massage for people with cancer is integrated in rural as well as urban areas.
The demand for oncology massage created the need for more trained therapists. Lyse and her colleagues stepped into this void and created a training program that has evolved into its current 300 hours offered through Arborescence, Inc., teaching programs through accredited massage schools (Arborescence, 2020). Hospitals and palliative care centers increasingly recognize the need for massage therapists to have advanced training in oncology massage in order to safely offer treatment. Since 2012, the Québec provincial association has recognized the specialized skills and advanced training by setting competency standards for oncology massage therapists. This base competency requires an understanding of the pathology of cancer, how to work with clients and health personnel, precautions, contraindications, and self-care as an oncology massage therapist. (Fédération Québécoise des Massothérapeutes, 2020).
Arborescence has expanded its reach beyond Québec to Belgium, where oncology massage is taught through Mes Mains Pour Toi (Mes Mains Pour Toi, 2020). Courses are offered to massage therapists, other professionals involved in cancer care, and family members caring for a loved one.
Savoir être, Savoir faire
Sylvie Lepage’s former career as a social worker prepared her well for savoir être (how to be), and oncology massage training provided the savoir faire skills (how to do it). Through the regional cancer association, she has been instrumental in bringing massage for people with cancer to rural Québec. Based on her personal experience of seeing her partner live with and ultimately die from cancer, Sylvie is aware of the importance of massage as a support for family and friends who are closely helping loved ones living with cancer.
Alongside Sylvie, and Lyse at Arborescence, are Julie Jobin and Isabelle Bujold. Together they train massage therapists in the art and science of working with people with cancer, ensuring continuity of care for years to come. Their work focuses on inpatient and palliative care. Their goal is to accompany people living with cancer through their treatments, contribute to pain management and improve quality of life.
To date, research into oncology massage has been limited. As part of a quality assurance assessment, McGill University and Sainte-Justine Hospital Center conducted focus groups to assess the impact that massage had on the children with cancer and their families. It was found that massage improved sleep and was a distraction from the cancer experience. Parents reported a release of their own suffering when they saw a change in their child after receiving massage (Massage Therapy Canada, 2006). Lyse sees the number of variables and possibility of bias as difficulties in pursuing massage research.
The powerful women who created oncology massage in Québec realize that their years of hard work will be best honored by ensuring that there is a new generation of skilled, compassionate oncology massage therapists who will continue to educate and grow the profession.
Institute and Network Massage bij Kanker (Oncology Massage Network)
In the Netherlands in 2011, providing massage to people with cancer was considered a risk. The belief that massage could contribute to the spread of cancer was still deeply ingrained and a diagnosis of cancer was an absolute contraindication. Fortunately, the Dutch women who are behind the rapid growth of oncology massage in the Netherlands considered it a risk worth taking.
Estelle Smits and Klara van Zuijdam were the founding directors of oncology massage in the Netherlands. They met at an oncology massage course in Belgium offered by a physician who also practiced acupuncture. Their shared passions and vision, along with a growing understanding of the required treatment knowledge and skills, served as the launch for the development of oncology massage.
An overview of the broader context of CIM in the Netherlands has been outlined in recent research (Jong et al., 2019). In 2014, some form of CIM was available in 92% of hospitals and 52 mental health care centers, and was primarily used to address anxiety, restlessness, pain, stress and fatigue (Jong et al., 2019). Despite CIM modalities being insufficiently integrated into the health care system, encouraging results indicate that 42.6% of the respondents in this study were seeking research on CIM and oncology (Jong et al., 2019).
It is within this environment that the Institute of Massage with Cancer was founded. It started with a foundational course, based on the principles of the Society for Oncology Massage, and then in 2012 the Oncology Massage Network began. In 2016 Estelle Smits continued as sole director of the Institute and Network, developing a joint approach with the medical sector to integrate oncology massage into hospitals. Initiatives included a five-day hospital training program, followed by a pilot project of creating three-month internships in various hospitals throughout the country.
By 2019, the Institute offered 31 foundational courses, had trained 350 oncology massage therapists, and were training new teachers. Two other courses were developed: Massage with Hematological Cancers (2016) and Oncology Massage in the Hospital (2017). Other additions included various one-day courses on specific types of cancer, and inviting oncologists, surgeons and oncology nurses to teach at the Institute. The Oncology Massage Network and the Institute of Massage with Cancer are recognized experts in the field. This extraordinary growth and acceptance could only be achieved by a comprehensive and long-term vision accomplished through consistently hard work.
“Together we are strong” is the mission statement of the Network and it has four basic goals:
- To make oncology massage known to all people living with cancer.
- To make massage accessible for all people living with cancer.
- To learn from and share with each other.
- To set up a quality standard for oncology massage.
The Oncology Massage Network has a clear mandate communicated through the conditions of membership, that requires members to practice the guidelines of training, attend an annual education day, and serve the interests of the Network in all communication about oncology massage.
Promotional materials include flyers, gift certificates for discounted massages, information letters for oncologists and lymphedema physiotherapists, as well as articles in medical, patient organization and hospital magazines.
Estelle Smits reflected on how it was “the right time” for the rapid and extensive development of oncology massage in the Netherlands. A sense of trepidation was evident when she spoke about what a big step it was to publicly claim that massage while living with cancer and undergoing treatments was not contraindicated. One can only wonder at the bravery it took to take a step out of line with thoughts and practices that had never before been challenged.
Eight years after its inception, the Oncology Massage Network has a paid coordinator, is included in the National Referral Cancer Guide, and is recognized by most hospitals as a safe provider of oncology massage. Furthermore, the Institute of Massage with Cancer has received provisional Recognized Education Provider status from the Society for Oncology Massage.
The original vision remains, and there is work yet to be done. Hospitals increasingly acknowledge the important work of oncology massage; funding, however, remains sparse. Massage therapists are readily accepted as volunteers which, in Estelle Smits’s view, does not recognize the advanced training and professionalism of oncology massage therapists who deserve to be paid. Access for massage therapists to electronic charting in hospitals is yet to be established. Universal health care does not include massage; only people with additional insurance can hope for some coverage of their massage treatments. Universal access to massage for people living with cancer remains a long-term goal. Finally, a strong evidence base is required to further establish oncology massage as a specialty that addresses the emotional and physical needs of people living with cancer.
These as-yet unrealized outcomes mirror the gradual establishment of CIM integration into medical care and institutions. Demand will grow as an increasing number of people experience the short-and long-term benefits of massage to manage the side effects of cancer treatment, and its importance in end-of-life care. Physical and financial access to oncology massage may become a standard of care.
Horacio Albarran-Frias has been working as a massage therapist in Mexico City since 2003. In 2008 his mother was diagnosed with cancer and was told that massage was not safe. She was encouraged to leave her health care in the hands of her oncology team. Horacio knew that her need for touch was essential to her well-being.
Through a lucky turn of events, in 2014 one of his regular clients recommended Horacio to offer reflexology in a hospital chemotherapy infusion suite. Oncology massage was, at the time, on no-one’s radar. Horacio had been “looking for this for years.” His work is supported by patients and volunteers who see first-hand the benefits of massage for people with cancer. The hospital pays Horacio for the treatments, but the rate is so low that it could act as a deterrent for other therapists wanting to offer oncology massage in hospitals.
There is no standardized education or accreditation for massage therapists in Mexico. “Anyone can offer massage,” Horacio said. He is the first to admit that establishing integrative cancer care and oncology massage is still in its early days. His work with cancer patients inspired Horacio to offer the safest treatments possible, and he enrolled in Tracy Walton’s oncology massage course. He also opted for training at MD Anderson Cancer Center. Once basic training was complete, Horacio became an oncology massage trainer for spa therapists with Wellness for Cancer. The initiatives of this Colorado-based charity include creating awareness within the wellness industry regarding people affected by cancer, and developing global training that facilitates movement toward personalized wellness (Wellness for Cancer, 2020). The motivation for bringing oncology-informed staff to spas was based on a perceived disconnection between clients who wanted to de-stress and heal versus the ability of spas to provide safe, effective care for people with cancer. All therapists require a baseline of knowledge on massage adaptations to not compromise the health and recovery of their clients.
Horacio’s work as a spa massage therapist trainer has taken him to resorts in Mexico, the Bahamas, Barbados and Jamaica. He reflects on how the spa industry is client-need driven with very little time allowed for thorough intake procedures. Spa massage therapists need to be adept at getting the necessary information from their clients. Without knowing about lymph node dissection, surgery, chemotherapy and radiation the client has received, the potential to do harm is ever-present. The three-day, 24-hour oncology massage course is offered to spa staff at their place of work. Theoretical and hands-on practice cover the standard oncology massage training: What is cancer? How does it metastasize? Is massage safe? What precautions and contraindications are required? How is a safe massage treatment offered to someone who has or has a history of cancer?
In the time that Horacio has been working as a trainer, he has noticed that large resorts want their staff to be cancer-aware so that all clients can enjoy a massage while on holiday. Meanwhile, with his spa training, hospital-based massage therapy and home visit treatments, Horacio is making a living as a massage therapist. He also remains dedicated to educating massage schools on the importance of oncology massage as an essential knowledge base for all massage therapists.
Rebecca L. Sturgeon began working with oncology patients in 2010 and has been a massage therapy educator for the majority of her career. She is currently the Education Director for Healwell, working towards the meaningful integration of massage therapy into health care.
Janet Penny RMT has a private practice in Ottawa, Ontario. She is the co-author of Oncology Massage and offers virtual courses on how to safely work with people with cancer. Reach her at email@example.com