Retinoblastoma Follow Up Care: the Long and Winding Road

Monday March 13, 2023

Retinoblastoma follow up care is vital for all children after treatment, and for many survivors throughout life.  The end of cancer therapy brings both celebration and uncertainty.  Knowing what to expect can help calm worries and empower strong advocates.  Child Life Specialist Morgan Livingstone reviews what follow up care may involve, and tips to help families and adult survivors navigate this stage of medical care.

A long roads winds through rough country of valleys and hills.

Treatment is Over – What Happens Now?

So active treatment is over and YOU CELEBRATE! You did it! As you settle into the “new normal”, it is important to acknowledge the gravity of all that you have been through. Breathe.

It’s important for everyone in the family to know that they might find the end of treatment both exciting and scary. It can take time to adjust to being done with the treatment routines of the past months or years. You may find you miss the medical team and the other families that you have been seeing regularly during treatment. Remember, adjusting to end of treatment will take time.

Here are some facts and tips for parents about managing and adjusting to the end of active treatment:

  • Know that it can be normal to have a hard time when treatment ends, even if you and your family have been looking forward to it.
  • Relapse within the eye is common among children who have eye salvage treatment, and relapse events may continue for several years after the initial treatment. Remember that Rb specialists expect this and will carefully plan follow-up care to ensure any new tumour activity is found and treated early.
  • Remember that relapse outside the eye is rare when a child receives appropriate treatment and close follow up for both eyes. However, it is becoming more common as greater efforts are made to save potentially dangerous eyes. Always attend your follow-up appointments, and raise any concerns early.
  • Talk to your retinoblastoma care team if you are concerned about relapse so you know what to watch for and how they will be checking your child for signs that cancer has returned.
  • Exams Under Anaesthetic (EUA) continue for at least three years after the last treatment, but schedules vary depending on the type of treatment and how the cancer responds. Ask about the follow-up schedule you will have, including when your child will have appointments, EUAs and other assessments or tests that can tell you more about how they are doing.
  • Talk to other parents whose children have finished retinoblastoma treatment.
  • Know that fear of cancer coming back may never go away completely, but most people find it does get better with time.
  • If you or your child are finding that you spend a lot of time worrying about the cancer coming back, talk to the retinoblastoma care team and/or your family doctor about referrals for counseling or other kinds of support for managing stress and anxiety.
“Help Wanted” sign – the text is white on a red background.

Features of Follow-Up Care

Care for children diagnosed with cancer does not end when active treatment has finished. Your child’s health care team will continue to check that the cancer has not come back, they will work to manage any side effects, and monitor your child’s overall development and health. This is called follow-up care. All children treated for cancer should have life-long follow-up care.

Follow-up appointments generally involve different assessments and tests to monitor the effects of the cancer and its treatment, the cancer’s response to treatment, and the child’s overall progress after active treatment. A child who is part of a clinical trial will be followed according to the trial’s guidelines. Routine check ups, tests and diagnostic imaging scans may be part of follow-up care over the months and years ahead.

The ophthalmology team will work with you to protect and maximise your child’s vision, For children who have experienced vision loss and/or hearing loss, some rehabilitative supports and care may be needed. These follow up assessments will figure out what your child will need to be and feel successful.

Considerations in the years after treatment may include:

  • orientation and mobility training, perhaps training with a guide dog in the future;
  • learning braille and/or touch typing;
  • adapting play, learning materials and equipment so your child can fully and independently participate in life; and
  • learning to use accessibility tools such as magnification, high contrast, and screen-readers on smartphones, computers and other devices.

These services are provided outside the hospital, and you may need to ask for referrals from your medical care team.

If your child has a prosthetic eye, ongoing appointments with the ocularist will also be essential to make adjustments and new prosthetic eyes as your child grows.

Here is a short video of kids talking about finishing active treatment and moving to Follow Up care appointments.

Support Healthy Development and Routines for Children

A child’s reaction to being done with retinoblastoma treatment is related to their age, personality, type(s) of treatment received, and other factors. For some children, the first few months and years after treatment are a time of catching up developmentally, as well as growing socially with peers and the greater community around them. Many young children will thrive and find security in routines and knowing what to expect day to day.

Here are some simple tips to support child development and create routines for children of different ages.

  • Should start catching up with physical and social development when treatment ends.
  • Benefit from caregivers talking and reading to them, with time for face-to-face interaction.
  • Should have time to interact with other infants and children their age, such as in day care, play groups, or music classes.
  • Develop through exploration and play with toys they can safely hold and pick up.
  • Need consistent caregivers and regular routines for eating, sleeping, playing and other daily activities.
  • If infants and very young children do not seem to be doing things that other children their age are doing, they might need what is called an Early Intervention Evaluation to identify areas where they need extra help.

Some services that can help children when they need help meeting developmental milestones include:

  • Physical therapy.
  • Occupational therapy.
  • Speech therapy.

Talk to your Rb team and family physician about any concerns you have about development, and ask for a referral for this kind of evaluation.

  • Consistent limits and rules help toddlers and preschoolers feel more secure. Caregivers can be clear with the child about what the rules and limits are so they know what to expect. This also helps them be and feel successful.
  • Need time to play as a way to explore the world around them and understand it. Children use play to learn and practice skills which helps promote mastery.
  • Play time should include time interacting with children their age and time playing alone. Preschool, regular play dates, or classes for children their age to provide time for interactive play. Quiet time that supports alone play can be added to daily routines. You might try a daily quiet time that allows alone play, especially if your child stops napping regularly.
  • Can be encouraged to be as independent as other children their age. They might be ready to begin or continue toilet training, learn to dress and undress themselves, or put on their own shoes.
  • If Rb treatment and appointments or hospitalization meant missing school, children should return to school as soon as they are able. Going back to school supports social, academic, and coping development and provides a consistent daily routine.
  • Should resume activities they enjoyed outside of school and be encouraged to find new activities to try. Developing or advancing skills build self-esteem and promote a sense of accomplishment.
  • Usually enjoy developing relationships with other children and may enjoy being part of programs for kids with cancer, even after treatment ends.
  • Some children may look or feel different after Rb treatment. Stay in contact with the child’s school so any challenges a child experiences can be supported and addressed quickly.
Download the Child Development Guide Post Rb Treatment

Think About a Child’s Experience

Perspectives from the kids themselves

At the Canadian Retinoblastoma Society Research Advisory Board (CRRAB) Symposium, a number of childhood retinoblastoma survivors no longer in active treatment and their siblings were able to share their thoughts and feelings about follow up care and what follow up care appointments mean to them.

Names have been withheld for confidentiality:

Sibling: “It’s much better now (follow up appointments). My mom is still stressed about things if there are doctors’ appointments, but she always worries a lot. My [sibling, Rb survivor] likes to see the doctors and the team. They are our friends since he was a baby. We all love to see you [the child life specialist] and play with all the medical stuff and make things. We love seeing the team.”

9-year-old Rb survivor: “Its fine. I know it’s important. I don’t like to miss too much school so it’s better if it’s just one day [for appointments]. I don’t really remember the time when I was a baby and had the treatments, but I do know about it because we talk about it. It’s good to talk about it when we are all together like this [at the child life program] because they [the other kids] know what I’m talking about.”

Sibling: “It’s far for us to come for the appointment, so I always get to come and we miss school. I really like the team but I don’t like how worried my parents will be that something is wrong. But I like coming. Especially when we play and go for visits in the city.”

Seeking Information Online: Helpful or Harmful?

The risks of using online health resources include increased anxiety and fear. The term “cyberchondria” is a new term, and can be defined as someone experiencing a high amount of health anxiety from searching symptoms on the internet.

Self-misdiagnosis is also a danger, especially if doing so increases the risk of avoidant behaviour such as not seeking treatment, or the other extreme of calling your doctor constantly about every health-related question you have.

Self-reflection is a first step in deciding next steps – this is a chance to assess whether this web search is “helpful” or “hurtful”. Finding the right balance for you and your health, as well as following the recommended guidance and appointments from your team will be essential in navigating lifelong follow up care.

Participating in online parent and survivor groups for retinoblastoma health-related information can offer different types of information. This can include survivors sharing their own experiences of what has taken place through their follow up care, and their speculations about what your follow up care might be like or should be like. It can also include opinions and personal recommendations for where to seek care, and which medical teams and hospitals they like/dislike/prefer. These group interactions can range from incredibly helpful to harmful.

These three articles share some pitfalls of online communication, and guidance for effective social media support groups and research:

A meme featuring Toy Story characters Buzz and Woody having a conversation. Text above and below says “I googled your symptoms, You have 1 week to live”.

Follow Up Care Resources Online

If you are seeking more information about retinoblastoma follow up care and retinoblastoma’s impact on life beyond active treatment, there are great resources available from World Eye Cancer Hope, the Childhood Eye Cancer Trust (CHECT), and other reputable websites.  Here is a selection of useful resources:

WE C Hope Resources

End of Treatment – includes:

  • Celebrations and events marking end-of-treatment.
  • Immediate and long term follow-up care.
  • The new normal of surveillance follow-up care and beyond.
  • Relapse, including signs and symptoms of relapse inside and outside the eye, what to expect when relapse happens, and how to prevent relapse outside the eye.
  • Second primary cancers, including who is at risk and symptoms to watch for.
  • Questions to ask the doctor.

One Rb World Survivorship Playlist

Video recordings from 12 One Rb World conference sessions in 2017, 2020 and 2021, including:

  • Psychosocial outcomes and mental health
  • Vision outcomes and lifelong eye care.
  • Second cancers: risks, screening, and lifelong care
  • Survivor perspectives

Retinoblastoma Genetics – includes:

  • Retinoblastoma genetics guide
  • RB1+/+MYCNA retinoblastoma
  • RB1 Mosaic mutations
  • Genetic counselling
  • Genetic testing
  • What test results mean
  • Creating a family when you have a RB1 pathogenic allele (gene mutation)
  • Pre-implantation Genetic Diagnosis (PGD)
  • Genetics Glossary

CHECT Information Hub

After Retinoblastoma – includes:

  • What happens next – what families can expect from their long term follow up team
  • Adults after retinoblastoma – useful information for adults who have had Rb.
  • Genetics of retinoblastoma – detailed explanation about the genetics of Rb.
  • Second primary tumours – risk factors and looking after yourself.
  • Rb into adulthood – this article explains the life-long aftercare you can expect to receive in the UK.
  • Planning a family – creating a family after Rb and the options available.

Late Effects of Early Childhood Cancer Treatment

Cancer.net is another reputable source for more information about navigating post-childhood cancer care into adulthood.  Their guide to Late Effects of Childhood Cancer includes comprehensive data on late effects of childhood cancer treatments over the course of an individual’s lifetime, and links to further resources.

The following video was adapted from this content.  The presenter, Lisa Diller MD, is Vice Chair in the Department of Pediatric Oncology at Dana-Farber Cancer Institute, where she is also Director of the David B. Perini Jr. Quality of Life Clinic for Childhood Cancer Survivors.

Transition to Adult Follow Up Care

Promoting independence at all stages of development is always a goal for children and families.  This can be exhilarating, and also extremely difficult when navigating the process of a child transitioning into adult retinoblastoma follow up care.

Throughout Rb care, treatment and follow up, it can be helpful to organize and keep a personal record of your child’s medical care, including information related to:

  • Specific therapies and surgical procedures; and
  • EUAs and other assessments both during and after treatment.

The retinoblastoma team and your family doctor can assist you with this. This record helps a child enter adulthood with a clear, written history of their diagnosis, the treatments and follow up care they received, and the team’s recommendations about their ongoing follow-up care.

This easy-to-follow form can help an individual transitioning into adult follow-up care keep track of important information about their cancer history and survivorship care plan.

Download ASCO Treatment Summary Document

Some youth continue to see their retinoblastoma ophthalmologist and oncologist, while others transition fully into the care of specialist physicians closer to home, to their primary care/family doctor or another health care professional. This decision depends on several factors, including the type and stage of retinoblastoma for which the child was treated, visual outcomes, treatment side effects, health care systems in your country, and your family’s personal preferences. Talk with the Rb care team about your child’s ongoing medical care and any concerns you have about this transition.

Be sure to share the retinoblastoma cancer treatment summary and survivorship care plan forms with all future health care providers. Details about the specific treatments given are very valuable to the health care professionals who will care for your child throughout their lifetime.

Life Beyond Retinoblastoma

There is currently no international (or even national) consensus about what follow-up care should involve for children and adults beyond retinoblastoma treatment.  This includes frequency and duration of EUAs, screening for side effects and second primary cancers, eye care, and mental health care.  Thorough research into these aspects of care will help shape the best survivorship care at all stages of life.

In the meantime, we hope this review of follow up care will help your family navigate life beyond retinoblastoma treatment, and advocate for the best possible ongoing care.

Image: A group of people gathered under a tree are smiling at the camera. On the left, Melinda wears a blue top. In the middle, Marissa wears a One Retinoblastoma World t-shirt and holds a white cane. To the right of the frame, Clayonia holds Camilla and waves at the camera. Max stands in front of them, holding his white cane. Behind them, a bright blue sky sweeps over rich foliage and red-roofed buildings.

Survivors of different ages enjoy a fun and therapeutic break together at WE C Hope USA’s first Midwest Family Weekend in October 2022.

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About the Author

Morgan and Doc McStuffinsMorgan Livingstone is a Certified Child Life Specialist and Certified Infant Massage Instructor/Trainer. She is passionate about improved child life and psychosocial supports for children and families affected by retinoblastoma.

As the Child Life Officer of World Eye Cancer Hope, Morgan contributes to the website’s Child Life sections, and speaks globally about child life supports for children with retinoblastoma. Morgan provided enriched multi-day child life programming for children of all ages at both One Rb World in Washington, D.C. in October 2017 and the Canadian Retinoblastoma Research Advisory Board meeting in December 2017.

Morgan also writes and creates resources for children and adults, and participates in child life research studies. She won the inaugural Innovation Grant at Operation Smile for developing an APP that uses Virtual Reality to prepare children receiving cleft lip and palate surgery for their operation.

Download Morgan’s helpful parent manual for supporting children’s worries using Worry Eaters.

Follow Morgan on Twitter