When 51-year-old Joanne Johnston was diagnosed with stage IIIB nodular melanoma in 2014, she wanted to get started on treatment as soon as possible. She looked forward to finishing her 12-month interferon treatment so she could heal and get back to her job as a Life Enrichment Aid at a nursing near her home in Oshawa, Ontario.
But after a difficult course of treatment that included flu-like symptoms, shortness of breath and headaches every day for the first month, and a month-long pause in treatment due to liver-related side effects, her health concerns didn’t end there. Shortly after her treatment ended, Joanne developed shingles that lasted for months, which were followed by a diagnosis of treatment-related hypothyroidism.
Then her health care team discovered that the lymph nodes in her chest were enlarged – she feared the worst: that her cancer had returned. In some ways, it was a relief to find that the cause was sarcoidosis. Finally, a few months after the sarcoidosis diagnosis, she discovered she had fibromyalgia. “I just kept thinking, when am I going to start to feel better?”Joanne says. Naturally a positive and upbeat person, she was starting to get discouraged by her ongoing health issues.
Thankfully, her sisters, along with her friends, have made sure she was supported through that difficult time. Early on in her treatment journey, her hospital also put her in touch with another woman who had been diagnosed with melanoma 20 years earlier. Joanne has drawn much strength from their friendship and the conversations they have had during her treatment, and they are still in touch with each other today.
“If it weren’t for my caregivers and my new friend that called me with advice, I don’t know how I would have made it this far,”
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Joanne is not alone in feeling stress and anxiety related to her melanoma diagnosis and treatment. One study from Memorial Sloan Kettering Cancer Center estimated that about 30 percent of patients with melanoma show signs of psychological distress, including anxiety and depression.[1] And these feelings don’t simply vanish once treatment is finished.[2],[3]
Fear and anxiety are not only common and natural responses to a cancer diagnosis, they can also serve a positive purpose, according to Dr. Rinat Nissim, from the Princess Margaret Cancer Centre. During Dr. Nissim’s presentation at a Toronto Melanoma Patient Information Session in 2017, she explained that fear can motivate us to take action, such as making healthier food choices and taking our medications as instructed. Problems arise only when fear and anxiety interfere with our daily lives.
The answer, said Dr. Nissim, lies not in trying to ignore or resist feelings of anxiety, stress, or fear, but rather in accepting that those feelings will arise.
“Radical acceptance does not mean that you like the anxiety or that you agree with your anxious thoughts or feelings. It does not mean that you give up to your thoughts or feelings. It just means that you are observing them; you’re letting them come and go like waves, instead of getting all tangled up in them,” she said.
It has been five years since Joanne initially found the mole on her inner thigh, and things are still a struggle. Her sarcoidosis and fibromyalgia continue to impact on her daily life: a recent trial return to work left her exhausted and drained. And while she says she doesn’t live in fear of a recurrence of her melanoma, it isn’t far from her mind.
Managing her anxiety and ongoing health issues has meant focusing on eating well, getting lots of rest, staying sun safe, and making sure she gets regular CT scans and MRIs. She also attends a Melanoma Support Group in Oshawa every month – sharing their stories, supporting each other, and sometimes crying together have brought the group members close together.
“It helps relieve some of the stress and anxiety…because no evidence of disease (NED) doesn’t sound as good as cancer free,” she says.
WATCH NOW
Coping with the fear and anxiety of a cancer diagnosis. Presented by Dr. Rinat Nissim, Ph.D., C. Psych.Psychologist, Department of Supportive Care Princess Margaret Cancer Centre, University Health Network
WHERE CAN I FIND SUPPORT
MNC offers an online patient forum and in-person support groups where you can discuss concerns and exchange insights, as well as a Patient-to-Patient Support Program, which can put you in touch with other cancer survivors to talk about your experiences and share concerns or anxieties you may have.
For more information, visit:
https://www.melanomanetwork.ca/ melanoma-recurrence/
https://www.melanomanetwork.ca/ how-do-i-get-support/
For support information contact:
Mary Zawadzki, Patient Care Specialist
mzawadzki@melanomanetwork.ca
1.877.560.8035 x108
[1] Kasparian NA, McLoone JK, Butow PN. Psychological responses and coping strategies among patients with malignant melanoma: a systematic review of the literature. Arch Dermatol 2009;145(12): 1415-27.
[2] Oliveria, SA, Hay JL, Geller AC, et al. Melanoma survivorship: research opportunities. J Cancer Surviv 2007;1(1): 87-97.
[3] Oliveria SA, Shuk E, Hay, et al. Melanoma survivors: health behaviors, surveillance, psychosocial factors, and family concerns. Psychooncology 2013;22(1):106-116.
