Erin Cummings, Founder and Executive Director of Hodgkin’s International, shared a post on LinkedIn:
“Did you know that….
There are thousands and thousands of long-term cancer survivors who, despite long odds, are still alive and well?
I guess ‘well’ may be a stretch, but I’m talking about people who were treated in the 70’s, 80’s, and 90’s, for example, and are now decades past treatment. Do you know what happened to them if they managed to stay alive? Does it matter? Or do you just consider them to be lucky, regardless of what life has been like for them?
As a young adult cancer survivor, I am thrilled to see the spotlight being shown on today’s AYA survivors. There is now a great deal of attention and concern about how to best care for this population, during and after treatment. It’s about time.
When I was a teen with Hodgkin lymphoma, more than 50 years ago, there were no ‘infusion clinics.’ There were no Barcaloungers, TVs, tablets, child therapists, or spaces to connect with other kids my age. There were no anti-nausea meds (that were very effective).
It was just me, on a stretcher, in the emergency ward of my local hospital, staring at lime-green walls—the color of vomit. Nobody coached me up about what to expect when it was all over. Late effects and continuity of care were not a ‘thing’ then. I was on my own.
So yes, I am happy to know that adolescents and young adults are now a focus. There is no ‘good time’ to have cancer, and indeed, the teenage and young adult years are one of them. I wholeheartedly agree that AYAs have been an underserved population.
But what about grown-up AYAs?
What do we do about those former AYAs who are now older adults, years past their initial cancer diagnosis, and not on anyone’s radar? At what point do we stop worrying about them? Do we assume that if we haven’t heard from them, they are doing just fine? If we’ve lost them ‘to the system,’ and no one is looking for them, aren’t they ‘underserved’ too? Especially if we know that they are at risk for late effects? (And we DO know that).
I hope that cancer survivors at ANY stage of their lives are considered worthy of the best care that we can give them. I hope that those who can help long-term survivors do so before it’s too late. We are running out of time.
I would implore you to find ways to reach out to us. Ask what happened to us. Look for us. Include us in your research, your conversations about survivorship, your plans for post-cancer care.
Long-term survivors have gained the hard-earned wisdom that comes from a lifetime of trying to stay alive. We have much to offer. Today’s cancer patients will become tomorrow’s long-term survivors, so let’s do whatever we can to make sure that they are not forgotten.”
More posts featuring Erin Cummings.