Study confirms need for further integrated care and support for thyroid cancer patients
Objectively speaking, Elizabeth Barbosa knew her thyroid cancer was unlikely to pose a serious threat to her life: Of all cancers, it’s among the slowest growing and the most successfully treated.
And yet … it’s still cancer! Objectivity is tough when someone receives that kind of diagnosis.
“Everyone is shocked when they hear the C-word, even if it’s the ‘good’ one,” says Ms. Barbosa who, despite occasional fatigue, has been healthy since her surgery at the JGH in March 2016. “My emotions were all over the place, not just because I was scared for my health, but because I was still grieving for my father, who had died not long before.
“Psychologically, I almost felt guilty that I was thinking about myself, because it was as if I was not properly mourning the loss of my dad. It was so strange to be in mourning and also to be afraid for my own mortality.”
At the JGH, Ms. Barbosa was assigned to a nurse navigator who stayed in touch with her on a regular basis, right through the post-surgical period. Not only did the nurse explain each clinical step, she became a reassuringly familiar face and a much-needed source of guidance and continuity.
At the same time, the nurse navigator was the focal point of a two-year study at the JGH—one of the first such investigations of its kind—to determine whether thyroid cancer patients really need and benefit from this kind of support. It concluded that the need is undeniable and the advantages are significant, even if the lives of thyroid cancer patients are rarely in danger and their outcomes are almost always good.
“I’m the kind of person who doesn’t hold things in, who needs to talk and confront my fears,” Ms. Barbosa explains. “Knowing there was someone to speak with made a huge difference.”
Meeting with Gabrielle Chartier, the nurse navigator in the weeks leading up to the surgery even helped accustom Ms. Barbosa to the JGH itself “by making the hospital feel kind of like a second home. I kept visualizing the day of the operation and that made it less scary.”
Seeing the nurse in the days and weeks after the surgery was also a valuable experience, because Ms. Barbosa needed reassurance and information after post-surgical complications delayed her discharge by a few days.
The study, which examined the experiences of Ms. Barbosa and 121 other JGH patients, had its origin in a determination by Dr. Michael Hier, JGH Chief of Otolaryngology – Head and Neck Surgery, to do more for thyroid cancer patients.
“In these cases, you’re often dealing with young parents, especially young mothers,” says Dr. Hier. “No matter what you tell them, and no matter how much reading they do on their own, it’s still cancer. Perhaps they’re envisioning not being able to see their children grow up, and that requires a lot of hand-holding.
“It’s not enough for a surgeon or an endocrinologist, whose time is limited, to tell them, ‘You’re going to be fine.’ They need to be walked through that very frightening time by a trained professional.”
This prompted Dr. Hier to approach the Genzyme pharmaceutical company, which makes a drug that is used during some surgical treatments for thyroid cancer. Genzyme expressed willingness to provide funding for a nurse navigator, but only if that person was involved in research related to thyroid cancer.
Thyroid cancer patients get a helping hand at Hope & Cope
Hinda Goodman, Coordinator of the Peer Mentoring Service, is available to match newly diagnosed thyroid cancer patients with volunteers who have experienced the same type of cancer. These peer mentors offer a sympathetic ear, along with support and understanding.
Hope & Cope has also launched a Head and Neck Cancer Support Group, which welcomes thyroid cancer patients. It meets on the fourth Friday of each month from 1:30 to 3:00 p.m. at the JGH Hope & Cope Wellness Centre. Interested patients must register by calling 514-340-3616.
As well, patients are encouraged to join the Wellness Centre, where they have access to a wide variety of activities that focus on wellness in mind, body and spirit.
To design and carry out the study, Dr. Hier turned to Dr. Melissa Henry, a psychologist who works in the JGH Departments of Otolaryngology, Oncology and Psychology, where she focuses on helping patients cope with advanced cancer of the head and neck. Together they were able to secure funding from Genzyme to evaluate this new model of care.
The experiences of the 122 patients were tracked from September 2014 to September 2016. The study also examined the outcomes of a control group of 78 patients with similar socio-demographics in another hospital, whose medical approach to treating thyroid cancer is roughly the same as the JGH’s.
Dr. Henry notes that until now, studies in the medical literature have recommended better care, coordination and support for thyroid cancer patients. However, no actual programs were evaluated in those studies.
“I was astounded by the level of need of this population,” Dr. Henry says, “and I was really surprised by the psychological complexity. There are a lot of symptoms to deal with, a lot of concerns, and a great need for information, support and guidance.”
The challenge now is to find some way of affording a nurse navigator as an ongoing element in the care of thyroid cancer patients at the JGH. Antoinette Ehrler, Associate Director of Nursing for Oncology, says she is aware of the needs of these patients, adding that the goal of the JGH “is to improve the experience and the effectiveness of the care that is provided to our patients and their families, who have ongoing, complex needs.”
Elizabeth Barbosa echoes this sentiment, adding she feels lucky to have had the services of a nurse navigator when she fell ill. “In the misfortune of having a diagnosis of cancer, I had the good fortune to speak with someone who answered my questions,” she says. “The internet has information, too, but there’s nothing like a real person to help you with feelings and not just facts.”