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For Young Adults With Cancer, Late Effects Can Be a Surprise Down the Road

For Young Adults With Cancer, Late Effects Can Be a Surprise Down the Road
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Published on April 3, 2020

After undergoing treatment for Hodgkin lymphoma (HL) as a teen, Susan Strong felt fortunate to have decades of relatively normal health. Thirty years after her cancer diagnosis, her life took an abrupt turn. During a routine visit with her general practitioner, the doctor noticed that Susan’s heart murmur sounded different and ordered a test. The test found a heart valve dysfunction caused by the radiation Susan had received in 1983. After many years of good health, and only a vague concern of late effects of cancer treatment, she was shocked.

“It was a kick in the gut, really. I was not prepared for it mentally or emotionally,” Susan said.

Susan had experience with some late effects of cancer treatment, including infertility and thyroid issues, among others, but this new diagnosis was a surprise she hadn’t anticipated.

“The possibility of late effects were mentioned, but I viewed them as highly unlikely, more like the rare risks that are listed on a consent form for surgery,” she said. Anything can happen. But, hopefully, none of it will.

Additionally, all HL survivors are at risk for developing a secondary cancer. Within two years of an aortic valve replacement, Susan experienced yet another shock—invasive breast cancer. She has undergone surgery and treatment for this secondary cancer and physically feels well despite her medical circumstances.

“The emotional toll of cancer survivorship has been the most challenging for me,” Susan said. “Because I was diagnosed at age 17, I’ve lived my entire adult life as a cancer survivor. 

“Today I wake up, and I feel good. I have energy,” she said. “I’m a big proponent of self-care. Having cancer at age 17 really taught me that I cannot take my body for granted. Our bodies are not machines; the mind-body connection is real and something we need to pay careful attention to. I have to work at creating balance. I have to be intentional about taking time to exercise, get enough sleep, and eat healthy foods. Self-care for me also includes setting boundaries and managing stress with tools like mindfulness and meditation.”

Susan’s suggestions for cancer survivors:

  • Place your own well-being as your highest priority. Self-care is a necessity, not a luxury.
  • Take your mental health as seriously as your physical health. Journal your symptoms over time.
  • Depression and anxiety are real and steal away your quality of life. And, you don't have to just live with it. See a therapist. I recommend a trauma therapist, particularly one who is trained in eye movement desensitization and reprocessing (EMDR) as a therapeutic tool.
  • Every day, do at least one thing that makes you happy.
  • Practice self-compassion. Be kind and gentle with yourself. Give yourself a break.

Be your own advocate:

  • Know your risks. Be proactive with follow-ups and screenings. Use the late effect assessment  (LEATT) tool and discuss it with your doctor to create a follow-up plan tailored to your needs.
  • See a cardiologist or a cardio-oncologist to get a baseline of your heart health and a plan for follow-up; even if it's a plan to revisit in five years.
  • Speak up: ask for what you need and be persistent, if necessary.

Susan continues to advocate for patients like her. She is the founding President and current Director of Patient Engagement for Heart Valve Voice US, the only patient-led organization in the country that focuses exclusively on improving the diagnosis, treatment and management of heart valve disease. 

As Susan explainssurvivorship is more than survivingIt’s living, finding hope and possibly a good therapist to help with the transition from patient to non-patient, and sometimes back to patient again. We hope her personal empowerment is inspiring to patients across the cancer care continuum.

~Lauren Evoy Davis 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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