Retinoblastoma Survivors’ Perspectives on Long-Term Follow up Care
Monday May 27, 2019
Many retinoblastoma survivors live with significant long term treatment impacts and second cancer risks. Yet most children, adult survivors and their families struggle to access appropriate ongoing care. Len Burns, a totally blind bilateral Rb survivor and licensed family therapist, highlights the most common survivor concerns, and potential ways to improve long term care and quality of life.
The Importance of Long-Term Follow-Up
Follow-Up from Early Childhood
Many retinoblastoma survivors grow up feeling different, and not able to understand why. Some of us are blind, some have significantly reduced vision. Others have a prosthetic eye. We also bring the experience of cancer treatment at an early age. Repeated invasive procedures and often intense therapy and surveillance protocols lasting months, sometimes several years. They leave us marked.
Education and support is essential for parents, children, health care professionals and teachers to ensure the child, teenage and young adult survivor can understand and navigate their experience well.
Clayonia from the USA writes:
“When I think of this topic, my thoughts go to encouraging families to seek out supportive networks for their children. I remember from a very young age feeling unhappy, depressed, different, and wondering why I was the person with one eye. I was often more comfortable being by myself rather than with others; unfortunately, my parents and some teachers didn’t understand how this all related to the early life trauma I experienced. Parents need resources to offer their children and for themselves. I was and am glad to be alive, but my young years were sad, because I didn’t understand or know how to accept my truth.”
Mental Health Support in Survivorship Care
We have made progress in the treatment of retinoblastoma in many parts of the world. We are often able to preserve sight, a rarity during the time I was treated in the late 50s. This is critical, but conventional medicine often misses that good quality of life requires more than merely eradication of the cancer and saving of life, eye and sight.
Cancer treatment is often traumatic both to children, parents, and siblings – and for other close relatives such as grandparents. Children, survivors and their families should receive ongoing psychosocial care throughout treatment and after it is complete. Support for mental health and wellbeing will be most impactful lifelong when it focuses specifically on trauma prevention and recovery.
This is challenging. Retinoblastoma is rare, and those impacted by it are scattered throughout the world. Treatment of the eye cancer itself is increasingly delivered entirely within the ophthalmology setting, reducing the potential for children and their families to benefit from psychosocial screening, support and trauma prevention programs offered through the pediatric oncology service. Childhood cancer survivorship clinics are few and far between.
Many retinoblastoma survivors with sight loss are also wary of revealing their personal psychological experience to health professionals. Harmful opinions about individuals with disability are pervasive, and a survivor’s personal experiences can be misinterpreted, with serious consequences for the adult patient or survivor-parent. Trust between individuals with disabilities and care providers to enable open, honest conversations is absolutely vital.
Abby from the UK writes:
“Over the last few years, many times my ability to participate in activities, make major personal and health care decisions, and express my opinion, has been hijacked by organizations, medical professionals, authorities and individuals. Because of their opinions about ether my sight loss or my RB1 mutation and its impacts, or both. Some situations individually are minor annoyances, almost expected effect of people’s assumptions and response to my disability. But cumulatively, their impact is compounded exponentially. Several have been soul-destroying on their own.
I feel at these times like the dog on a chain, being yanked around, told how my life will be or not be to fit in with someone else’s vision, what I can or can’t do according to their limited perspective and position of authority. And when I make my personal, independent choices or express my opinion, I am too often rebuked, excluded, or simply ignored. I am about ready to scream!
Instead I take a deep breath in and long, slow breath out, and over again, and again, and the frustration bubbles on… The scream is just under my breath, but I will breathe and not cry in this moment.
I know from conversations in our Survivors group that I’m far from alone in having these frequent stressful encounters. They add to the heavily layered emotional burden we already carry from the Rb experience. But I also think I’m far from alone in being reluctant to discuss any of it “on the record” with medical professionals. It’s too complicated to explain in a brief conversation, influenced by stressors that many doctors don’t recognise or understand.
The individual’s perception of my disability, the unpredictability of their response… That’s just another stress I’m not willing to take on when I have a life to live in front of me, and painful life experience of discrimination and prejudice behind me and in my everyday.”
One valuable strategy could be following families beyond treatment and helping them connect to local resources. A second strategy should be making mental health screening a routine aspect of survivorship for those who have access to such programs.
I participate in such a program in Los Angeles, attending a clinic day once per year. They are very knowledgeable regarding screening and the medical implications of my history. It would also be helpful to add routine screen for anxiety, depression and in particular PTSD. As one who has struggled with my share of PTSD through the years, I have brought this up and made it part of our conversations. They have been receptive, but I am certain there are other survivors who would also benefit from screening and potential referrals.
It is difficult for most medical professionals to fully grasp the anxiety many of us experience when one morning we feel an unexplained twinge, or experience persistent sinus problems that do not resolve as would be expected. Tracking the impact of this stress must become a routine aspect of survivorship care.
We Are Not Alone
There is nothing quite like being able to air out a problem or seek the thoughts of others with similar experiences right from your smartphone or keyboard.
Yet, many of us can go a long time without sitting across the table from another survivor. I often feel a hunger for this human interaction, and hold it precious when it is possible. I conclude with insight from Ffion, who expressed this sentiment so beautifully:
“You’re not alone. Being treated for cancer as a baby means you may well not know many, if any, others with a similar experience.
So a boat trip in the sunshine through Bristol with a group who understood your questions about the best artificial eye and which ointment to use was a rare treat!
The Childhood Eye Cancer Trust’s Beyond RB meet-ups are a great chance to be reminded that you are not alone – there are others who understand the challenges of declining vision and awkward GPs – but also to celebrate that we are still here, despite the challenges.
Shine Cancer Support for those in their 20s-40s is another way to share a glass of wine, a smile and advice on the challenges of conquering cancer.
Reaching out and getting answers from across the world online is a modern miracle of course. But it is nice to put down your phone, switch off your tablet and accept an out-stretched hand after a laugh, or a cry.”
I thank all of you who have contributed for your time and thoughtful comments. I know this is a difficult topic and we are all extremely busy with our lives beyond surviving retinoblastoma. This topic would benefit from extensive research to more accurately represent the vast knowledge and experience of those who must cope with the impact of retinoblastoma each day of their lives.
About the Author
Len Burns, M.A. LMFT is a long-standing participant in the retinoblastoma community, with a deep commitment to improving the lives of Rb survivors and the support of families. He has been a licensed family therapist in California since 1990, working in private practice as well as the nonprofit sector. He currently consults on issues of mental health as well as digital accessibility.
He has lived on the central California coast since 1980, sharing life with chosen family and Snickers, a contented brown tabby cat who keeps life real. Len is a serious runner, trains Jiu Jitsu several times a week and loves few things better than a long hike in the redwoods with a few friends.