Guest Blog: My Search for Adult Survivorship Care
Rachel McCallum is a long-term survivor diagnosed with Anaplastic Astrocytoma of the 4th ventricle of the brain stem in 1993. Her experience as a long-term survivor has encouraged her to become an advocate for others like herself who have struggled with the transition from pediatric patient to independent adulthood.
This is the second in a series of guest blog posts by Rachel. Read Rachel’s First Post →
If you’re interested in guest blogging, please reach out to us at info@childrenscause.org.
As stated in my previous post, it’s been a wild ride when it comes to finding long-term survivorship care as an adult survivor of a pediatric cancer diagnosis. Once I was too old to see my pediatric oncologist - who was already partially retired - she gave me a seemingly incomplete form with my cancer history on it and told me to show it to my adult primary care physician (PCP) — as if they’d know what to do from there.
However, adult PCPs often aren’t familiar with the latest in survivorship research. They may have few survivors under their care and, given our current healthcare system in the US, they simply are not given the time to get to know these patients in the intimate way each survivor deserves, nor do they have the time to do tons of outside research. This is why the Childhood Oncology Group’s (COG) survivorship guidelines exist. The guidelines from COG are meant to be a simple resource for PCPs providing continuing care for survivors of pediatric cancers, since these providers don’t have the precise knowledge that pediatric oncologists acquire over their specialized careers.
I love my pediatric oncologist to pieces, and I cannot say that she failed me in any way. As I learned during my social work education, most people are doing the best that they can with the knowledge that they have. With the focus in medicine being based on triage principles, it’s no wonder that doctors are often focused on saving the lives of those in most immediate danger first. In this case, they make sure that children survive life-threatening diagnoses — but too often give little thought to the quality of life (QOL) of long-term adult survivors.
“Long-term adult follow-up care is far too difficult for the average pediatric survivor to obtain.”
I find myself often wondering if certain medical and psychosocial issues are a result of my childhood cancer diagnosis and/or its treatment. I know each patient is unique, especially pediatric brain tumor survivors. But when I hear from another pediatric brain tumor survivor that he had his first seizure at 40 years old, I can’t help but get alarmed and wonder: “Could that happen to me?” I know one can’t really be prepared for an experience like having a seizure for the first time, but it would be nice to know the likelihood of it happening to me, and what I can do - if anything - to prevent it.
Thoughts like these are why finding quality lifetime survivorship care has been an ongoing concern for me, and the American healthcare system has been more of a hindrance than a help.
I was diagnosed long before ‘Obamacare,’ which meant the second I was diagnosed I had a ‘pre-existing condition’ that tied me to the health insurance plan my parents were enrolled in at the time. After my father left his job and our family’s healthcare situation changed, my parents paid out-of-pocket to ensure that I would always have health insurance.
Even after the Affordable Care Act (ACA) went into effect, I went through tedious paperwork in order to stay with the same insurer under Medi-Cal (California’s version of Medicaid). I had other choices, but I’d never known anything else, and I figured they had all of my important records going back to the time of my initial brain tumor diagnosis.
When I began considering a change, I wanted to secure my long-term records. But I soon discovered that the multiple fat manila folders of medical history going back to the early ‘90s had not all made it through the digitization process that nearly all businesses went through in early in the 21st century: My records were only available going back as far as 2007 — about a decade after my treatment had ended.
This became bothersome when I finally made my way to a long-term survivor clinic in 2020. I’d been looking at the COG list of long-term care clinics for ages. I cannot find it on their website in the same format that I remember, but you can look up locations via a map feature on the current COG website. Though there are actually quite a few long-term survivor clinics in the SoCal area, they each have certain requirements regarding age, years past treatment, where treatment was received, etc. Doing this research in my late twenties - having been treated at one of the big healthcare providers over 2 decades prior - left me with few options.
I finally made contact with the LIFE clinic at Children’s Hospital Los Angeles in conjunction with USC just as I was considering grad school for social work in late 2017. I started working on my Masters in Social Work (MSW) at USC in the fall of 2018. During the latter half of my grad school experience, I went to the student health clinic for a regular check-up covered by the student health fees that all students paid. When I told the doctor about my health history and desire to go to the long-term clinic at Norris Cancer Center, she suggested I purchase the student health insurance. Previously, I had waived the insurance to save money, since I was covered under Medi-Cal.
After a futile attempt at convincing my Medi-Cal provider to approve out-of-network services, I purchased the university’s student health insurance in order to receive the medically necessary follow-up care I’d been seeking most of my adult life. There is plenty of literature citing the medical necessity of such care. The American Association of Pediatrics recognizes that as many more children with cancer are surviving into adulthood, there are varying late-onset medical and psychosocial consequences that must be kept in check for the sake of the adult patient’s QOL.
In my case, a major QOL issue is extreme dry eye, due to the fact that my tumor occurred on or near a nerve that keeps my left eye from closing properly. I was extremely lucky to receive a referral to USC’s Roski Eye Institute. It happens to be the only Boston Sight clinic in the Southern California area.
For the first time, I was given options that none of the previous dry eye specialists I had seen had ever mentioned. I’ll write more on my personal late effects in future blog posts here.
The goal of this post is to point out that long-term adult follow-up care is far too difficult for the average pediatric survivor to obtain. As I have said before, each pediatric cancer survivor is extremely unique. As a member of a white, middle-class family and as someone who has lived 28 years past my initial brain surgery, I count myself among the privileged. If I must jump through hoops to get the care I need and deserve, imagine how much harder it must be for other children (now adults) diagnosed late last century who weren’t fortunate enough to have easy access to healthcare for various reasons!