Recognizing and Supporting Long-Term Childhood Cancer Survivors

Longtermsurvivor 1

Objective For decades, childhood cancer survivors have endured the lasting effects of their treatment—medical complications, physical limitations, and emotional scars that do not fade when the cancer does. Yet, the medical and advocacy communities continue to treat survivorship as an afterthought, failing to provide the recognition and support these individuals desperately need.

This is not a request—it is a demand. The time for dismissing long-term survivors as statistics or forgotten cases is over. Survivors do not stop fighting when treatment ends, and neither should the institutions responsible for their care."*

Implementation

✔ Mandatory Recognition of Late Effects in Survivor Care "Survivors must not be left navigating their complications alone. Long-term conditions stemming from childhood cancer require standardized evaluation, accessible treatment plans, and continued advocacy at every stage of life."

✔ Elimination of Dismissive Labels "Survivors are often categorized as ‘post-treatment’ rather than acknowledged as individuals facing lifelong medical battles. This language limits access to support and must be corrected to reflect the reality of survivorship."

✔ Direct Survivor Engagement in Medical Policy Decisions "If you do not listen to survivors, you cannot claim to understand survivorship. Survivors must have a seat at the table in policy discussions, advisory boards, and medical research—not as subjects, but as decision-makers shaping real solutions."

✔ Public Education on the Realities of Long-Term Survivorship "The world views childhood cancer survival as a success story, but it overlooks the ongoing struggle survivors face. Education must shift from ‘celebrating survival’ to supporting survival—ensuring individuals receive the care they need long after treatment ends."

✔ Independent Review of Survivor Care History "Survivors like myself have had to uncover past medical missteps on our own, often decades after treatment. A transparent, independent system must be established to ensure survivors can access their full medical history—without obstruction or denial."

Final Statement

*"Childhood cancer survivors did not choose this fight, yet they are expected to carry its consequences alone. This directive is not about accommodation—it is about justice. It is about recognition. It is about ensuring survivors receive the care, acknowledgment, and lasting support they deserve.

The time for waiting is over. The time for action is now."*

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"My dad always told me: ‘Don’t make yourself bigger than the problem.’ What he meant was simple—if people focus on me, they’re not focusing on the countless survivors who still need help. This fight isn’t about one person. It’s about every child, every survivor, every life impacted by the system’s failure to acknowledge what comes after treatment. I don’t want attention—I want action."

Joe Perusic

40yearsandcounting

I couldn't agree with you more. I have been a cancer survivor for most of my life- diagnosed with Hodgkin's lymphoma in 1972 when I was 15. That was 53 years ago. I had Cobalt radiation and MOPP chemotherapy. I have had numerous late effects, and I am not alone. I joined with other long-term Hodgkin's survivors in founding the non-profit "Hodgkin's International" several years ago. Our goal is to provide survivors with current information about late effects and to support them in finding ways to advocate for themselves.

The reality is that, as you have said, the onus is on us to be heard. No one is looking for us to tell us that we are at risk. We are all too often not believed when we show up to our primary care physician's office with symptoms that we KNOW are related to our treatment. We are frequently in the position of teaching our clinicians about late effects.

While there does seem to be a concerted effort on the part of researchers and some medical institutions to create survivorship programs, they tend to be geared toward patients who are currently in treatment. There is very little effort, if any, to reach those who have managed to survive for decades but are struggling mightily. I would argue that these survivors are MOST at risk, as their late effects are due to cancer treatments that were so toxic that they are no longer being used.

Hodgkin's International is working hard to make a difference. I would encourage you, and others who might read this, to visit our website and/or find us on Facebook. We welcome all survivors, not just Hodgkin's survivors. There is power in numbers!