10 Things Retinoblastoma Survivors Want You To Know
Monday June 8, 2020
Retinoblastoma is highly curable. But for many survivors, it has lifelong impacts. In 2019, our Alphabet of Hope shared survivor insights of #LifeBeyondRb. Rb Survivor and 2019 alphabet curator, Abby White, highlights 10 important messages from survivors about life beyond treatment and cure of childhood eye cancer.
The Survivors Alphabet – #LifeBeyondRb
Among childhood cancers, retinoblastoma is one of the most curable, with survival approaching 100% in developed countries. However, lifelong impacts are significant for many survivors. Vision loss caused by tumours and treatment, other late effects of treatment, second cancer risks arising from RB1 mutation and treatment, potential for the survivor’s children to inherit the RB1 mutation and develop eye cancer, psychological effects of the experience…
While survivors continue to navigate these impacts throughout life, they receive little attention, compared with the high focus on management of the eye cancer itself.
Research documenting the genetics of retinoblastoma and lifelong risks has not yet translated into practical, accessible care for most survivors. Mental health impacts of early life treatment and lifelong retinoblastoma burden remain largely undocumented.
Throughout 2019, we dedicated our Alphabet of Hope to the survivor perspective, sharing insight and experience of #LifeBeyondRb. The Alphabet gave a voice to adults who live with the physical, psychological and practical impacts and challenges of retinoblastoma every day.
The Alphabet of Hope project began in 2012 when we gathered powerful reflections from families affected by retinoblastoma around the world to share at the first One Retinoblastoma World meeting in London that year. Throughout 2018, we shared one letter from the 2012 alphabet every two weeks on social media, to raise awareness of diverse experiences through the retinoblastoma journey.
The posts spoke to people who had no previous experience of childhood eye cancer, to family members, medical professionals and affected individuals with different personal experiences. It sparked conversation and gave a voice to subjects infrequently discussed. We were inspired to create a new alphabet annually, focusing on a different aspect of retinoblastoma.
Our 2019 Alphabet was developed with participation from the international retinoblastoma survivor community. Discussion began within a large and well established Facebook group, continued in a smaller working group.
The ten points below are taken directly from our 2019 Alphabet. They do not cover all the important things survivors need to say. They simply draw out some of the key messages conveyed in last year’s alphabet.
1. We Must Talk About Vision Loss and Disability
Vision Loss affects nearly all of us to some degree. Our retinoblastoma world should talk about it more – it’s no bad thing. It just one facet of the brilliant individuals we are. When you talk about eyes saved, we survivors want to know how much sight is saved. A blind eye saved is useless, and we know the price paid in mental health over a lifetime may be very high.
Disability isn’t a bad thing. It’s hard to live with, primarily because the vision-oriented world does not design to accommodate our needs. It’s a part of who we are, the scars of our survival over cancer. #SayTheWord! We need the world to build for welcome and inclusion instead of fueling stigma and discrimination.
2. Enucleation Is Not The End Of The World
Enucleation is not the end of the world. It saved our lives. Immediate surgery has given us the best fitting artificial eyes with fewest complications. It’s a vital treatment for many, we can live with it – most of us wouldn’t be alive without it. But when you stigmatize it, you make us feel ugly, ashamed, less human.
3. The Psychological Impacts Are Many and Diverse
Lives interrupted, from the first dance of childhood, by cancer and the upheaval of treatment. By emotional trauma acquired through that experience. By disability discrimination. By retinoblastoma capturing our children. By second cancers threatening and mauling us and those we love.
Family Life… A destructive force, Rb crashes into families unbidden. The cancer and its treatment strip away familiar structures, routine and security. Strong emotions, when denied the care they need, cannot heal and too often become walls between us. Fear of subjecting our children to Rb causes some of us to deny ourselves the joy of a loving partner, our own family.
Bereaved…many times over. We grieve our lost innocence, childhood, sight, our hopes and dreams forced to change, broken faith, our family’s lost sense of security. We lament our prime adult years lost to fighting second cancers, and fear of them. We mourn treasured family and friends we lose to those cancers. With every loss, our heart breaks a little more.
Guilt for surviving when others we have known and loved did not. Guilt that we won the genetics lottery and do not have the lifelong consequences of RB1 mutation, while our friends do. Guilt that we passed the mutation to our child. Guilt for having some sight while others have none. Guilt that our parents’ relationship and our siblings’ childhood were ruptured because of us. We carry too much guilt…
Adolescent survivors share their experiences of retinoblastoma during Camp Sunshine Rb Week. The program welcomes 40 families annually to the Sebago Lake campus in Maine, USA, but was cancelled in 2020 due to the COVID19 pandemic.
4. Memory Is Lifelong, and PTSD Affects Too Many
Memory is lifelong. It’s a myth that children are so young they won’t remember invasive retinoblastoma procedures or treatment. Our bodies hold the physical sensations. Our souls recall how they made us feel. Our brains grow in response to those early experiences. How you support a child through Rb matters to mental health for the whole of their life
PTSD – it’s real and it affects far too many of us, child and adult survivors, parents and siblings. Please acknowledge it and learn from us. Care for the whole child and their family from the very start of retinoblastoma treatment so tomorrow’s survivors will carry a lighter burden than we do.
5. Quality of Life Should Be A Priority for All
Quality of Life is a priority for children in treatment today, but rarely for we adults who live daily with its effects and ongoing cancer risks. Our wellbeing should be a medical and humanitarian priority throughout life. The impacts don’t magically disappear when the eye cancer itself is gone – that’s just the beginning of the story for most of us.
Radiotherapy has major effects – damage to our eyes and sight, hormone imbalance, stunted bone growth, socket atrophy meaning we can no longer wear an artificial eye, second cancers that threaten and destroy our lives. It may be used rarely today, but it was primary therapy for most of us now adults. We live with the consequences every day, and our lives matter too.
6. We All Need Understanding and Appropriate Care
Heritable retinoblastoma increases risk of second cancers throughout life, and eye cancer in our children. But too many of us don’t know our own genetic status and how these risks apply to us. Genetic counselling and testing should be an integral part of care, not an optional extra we or our parents have to ask or fight for.
Second Primary Cancers – for decades, research has clearly shown many of us have high risk. So why is there still no retinoblastoma specific follow-up protocol? Most of us have no organized follow up, no survivor or late effects clinic, no named oncologist. We’re left in the cold to convince our uninformed doctors of the care we know we need. It’s exhausting.
Waiting with worry for one of the frequent unexplained symptoms to become “something more” or go away. How long should we watch the ache or lump this time before fighting the primary doctor again for investigations? What if the results aren’t good? And if they are fine, how long can we breathe easy? High second cancer risk isn’t easy to live with.
Need Understanding! Many of us have lifelong second cancer risk. We lose too many friends too often because their concerns are not taken seriously and cancer is found too late to cure. We need our doctors to listen to us, learn from us and act fast for us – our lives may depend on it.
Transition to Adult Care is improving for today’s children as more survivor clinics open. But there remains an infuriating lack of agreement on HOW to care for survivors for life. Without clear follow up protocols that address our specific needs, many survivors will continue to fear, allow risks to influence huge life decisions, battle for effective care, be diagnosed late with second cancers, die far too young.
Knowledge of our treatment history, our genetic status, our own risks, our children’s risks, screening protocols, options…with knowledge, we can be strong advocates, and so can our doctors. We also know the consequences of the knowledge vacuum – confusion, fear, frustration, late diagnosis, the loss of beautiful lives that could have been saved.
Parents, survivors, medical professionals and researchers work together at One Rb World 2017 in Washington D.C.
7. Outlook Depends On How YOU Respond To Us
Outlook depends on how YOU respond to our experience. We have lived through retinoblastoma treatment, and we continue to live with its many effects. Listening to us, working with us, and learning from us can help shape future care to be the best possible for the child, for the family, for the survivor – for life.
8. A Smiile Does Not Necessarily Mean All Is Fine
Joking is soul therapy when things go wrong, when an eye falls out, when a nurse asks us to cover our seeing eye and read the chart, when we’re scared of test results, when we’re tired of accommodating people’s reactions, or struggling with tech that isn’t designed with our sight-loss in mind. Sometimes a jolly good laugh with others who understand is a deep cleansing balm.
9. We Yearn for Acceptance
Yearning for acceptance and inclusion, just as we are. We ache to be free from fear of cancer striking us and our children, and we long to bring children into this world without the burden of retinoblastoma. We crave an ordinary life, richly lived.
10. We Aspire and eXceed All Expectations
Aspire: We survivors have the same hopes and dreams as do all people. Cancer has left its mark upon all of us, but we try to not let it define who we are and who we will become.
eXceed all expectations. We juggle many challenges, but we live boldly too. We have hopes and dreams, and we work hard to pursue them. We have travelled the world, flown planes, sailed tall ships, won Paralympic medals. We raise children, run businesses and charities. We scale mountains, literal and figurative. Don’t let your perception of our capabilities limit us.
Rb survivor Ffion helped sail the Jubilee Sailing Trust tall ship, Tenacious, between Hobart and Melbourne, before a month-long solo tour of Australia.
Watch the Alphabet
Watch the video showcasing the complete Alphabet and all 26 images shared throughout the year. A full text version of the alphabet can be found here.