2021 Survivor Survey: Relapse, secondary cancers are top concerns
One out of every two pediatric cancer survivors we surveyed this summer expressed a fear of relapse as one of their top three health concerns. More than half shared concerns about a secondary cancer diagnosis.
Here’s more of what we learned in our Summer 2021 Survivor Survey:
One-third include mental health as one of their top three health concerns. One survivor shared that “the trauma is so bad for me to the point I hallucinate or have flashbacks pretty often. My anxiety gives me pain in my port and makes me think I am relapsing.”
28% are concerned about fertility. “I can’t have kids and I think about that everyday and it makes me sad,” said one survey participant.
One in four are concerned about cardiac problems.
Over 70 percent of those we surveyed expressed an interest in learning more about the risks of late effects. Other top issues of interest include disability rights and legal protections, self-care, and financial rights and responsibilities.
These insights will help us ensure our educational programs address these top areas of concern.
Far too many survivors report that they - and their non-oncology medical providers - are underinformed about their treatment history. Eleven percent of those we surveyed do not have a survivorship care plan.
Decades-long survivors express feeling left behind:
“I have had to find my own way and make my own appointments and plans. I have felt lost, forgotten, and alone.”
We heard powerful stories from long-term survivors - especially those over age 40 - who feel that they’ve been forgotten about and that today’s survivorship programs aimed at ‘young adults’ leave them out in the cold. “I have not received follow-up information or care from the facility that treated me,” said one survivor who was diagnosed and treated in the 1980s.
Another survivor, treated several decades ago, reported that only one doctor in the past five years took her cancer history seriously, and she also was not given information about survivorship or long-term effects.
This is the cohort who pioneered pediatric survivorship, the first generation of kids to survive treatment in significant numbers. One of them self-described as a “guinea pig.” It is deeply troubling that any of these early survivors feel abandoned or excluded. At Children’s Cancer Cause, this is a survey point we take very seriously and will hold internal discussions around how to ensure our survivorship programs are as inclusive and impactful as possible.
Survivor identify is a lifelong, evolving journey:
“Cancer may have stolen my childhood, but that doesn't mean I have to let it define my adulthood,” said one survivor. “I get to choose what I want to be known for.”
Survivorship is a deeply personal journey. In our policy and awareness work, we highlight the survivors who are outspoken advocates, those who have chosen to use their voice and their story to illuminate the challenges facing other children. But we also recognize and respect that many survivors don’t want to share their story or recall their experiences. One survivor shared that he is constantly trying to keep his past hidden from new people: “Whenever cancer is brought up, that’s all they see. I’m more than just cancer.”
Wherever you are in your cancer journey, we see you.
To those who filled out the survey: Thank you for giving your time to share your stories and experiences. Your input ensures that we are best representing the unique needs and concerns of survivors in our program planning and in our policy work on Capitol Hill.