Parents and Survivors Can Help Doctors Create Great Retinoblastoma Care

Sunday July 23, 2017 (updated Sep 2022) | Abby White, WE C Hope CEO

Being the parent of a child with retinoblastoma, or living with the effects of this cancer every day, can be a frustrating experience.  Below, we look at just a few of the challenges we encounter at different stages of the retinoblastoma journey and for each, three ways we can help the medical community advance care.

Three young girls enjoy riding down a slide together on a sunny day.

Three young sisters enjoy life after years of retinoblastoma treatment disrupted normal family life. Yet their pathway ahead remains complicated by the life-long impacts of this cancer.

Awareness and Diagnosis

For many families, the challenges begin before diagnosis, when they see the early signs of squint or leukocoria (white pupil) and seek help for their child.

Retinoblastoma affects around 1 in 15-17,000 live births.  This equates to around 1,500 children per year in India, 270 in the USA, 135 in Mexico, 22 in Canada and 16 in Australia. Diagnosis is frequently delayed as many primary doctors don’t recognize the early signs and fail to head the parents’ knowledge.

Doctors and researchers who specialize in retinoblastoma recognize late diagnosis as a critical issue.  Delays rob children of sight and kill children every day around the world.  The community aims to develop common messaging and impactful campaigns to improve early diagnosis.

Three ways parent and survivors can help doctors improve early diagnosis:

  • Clearly understand the early signs and their intricacies so we can Explain them accurately without scaring people.
  • Join the conversation to develop consistent messaging and global campaigns that effectively raise awareness.
  • Participate in co-ordinated awareness campaigns.

Medical Care

A range of treatments exist for retinoblastoma, depending on the number, size, and location of tumours, whether one or both eyes are affected.  A range of other factors also influence treatment, such as availability, insurance coverage, and the family’s ability to comply with treatment.

When a child if first diagnosed, parents usually have little knowledge about the cancer or treatment options.  Decisions must be made fast, and parents trust their medical team to guide them through their options.

The child’s care often involves multiple subspecialties and sometimes shared care over several hospitals.  The family relies on the medical team to stay in touch with one another.  Significant confusion and overwhelm can arise when parents receive conflicting information from different doctors or departments.  In extreme cases, this can have tragic consequences.

3 Ways Parents can help doctors advance care:

  • Share our experiences of treatment access challenges, and work with the medical community to identify and implement solutions.
  • Work with retinoblastoma specialists to develop effective informed consent and communications processes.
  • Support programs that make proven treatments available to all.

Family Support

Retinoblastoma requires specialist care that is available at only a handful of highly developed hospitals.  Most families have to travel great distances every 3-12 weeks for several years while their children are very young.  This puts great strain on family resources, relationships and personal reserves.  As families are widely scattered, communication and support from those with shared experience is limited.   These challenges combined impact a child’s outcome, and the family’s quality of life during treatment and beyond.

Children with retinoblastoma are very young, and the cancer experience can overwhelm their natural ability to cope.  Repeated medical procedures, family stress, loss of routine, uncertainty and physical illness all impact the child’s development and emotional wellbeing.  Supports implemented from diagnosis throughout treatment can significantly reduce these impacts.

Most retinoblastoma treatment takes place in teaching hospitals.  Families are usually happy to help medical students and doctors learn about eye cancer in children – after all, this knowledge is vital for early diagnosis.  However, children and parents do not like being exhibited as medical curiosities.  Repeated interaction of this kind from an early age may impact the child’s self-esteem and confidence long after treatment ends.

3 Ways Parents and Survivors can help doctors advance Family Support:

  • Get involved with Rb family support programs that serve your hospital, region or country, to help grow the community and available resources.
  • Work with the medical community to identify research needed to understand how retinoblastoma impacts the child and family throughout life, and get involved in the research when it is conducted.
  • Work with hospitals to develop supportive retinoblastoma care, from child life provision to sensitive medical training.

Life After Retinoblastoma

Though treatment for retinoblastoma has advanced significantly over the past 30 years, life-long care remains limited.  Survivors are widely scattered, and few retinoblastoma-specific long-term follow-up programs exist.

The risk of second cancers hangs heavy for many survivors.  This is compounded by poor access to informed medical professionals or ongoing survivorship care.  Survivors are often reluctant to discuss second cancer risk or experiences, feeling a strong sense of responsibility to minimise worry among their peers and parents whose children have been recently diagnosed.

Genetic testing identifies risk of retinoblastoma and second cancers for each individual and family, but access to genetic counselling and testing is ad hoc for most.  As a result, many survivors do not receive appropriate care, and children of retinoblastoma survivors are often not diagnosed as early as they could be.

Survivors often become experts on retinoblastoma and their own risk.  However, they often meet challenges when seeking care from their primary doctor, who rarely knows the life-long implications of RB1 mutation or cancer treatment in infancy.  Within the retinoblastoma community, differing opinions on appropriate care for survivors creates confusion and slows access to care.

3 Ways Parents and Survivors can help doctors advance life-long care:

  • Talk openly about the psychological impact of second cancer risk, combined with level of knowledge and access to ongoing care.
  • Advocate for genetic counselling and high quality genetic testing accessible to all families and survivors as a standard of care.
  • Work with doctors to develop agreed survivor care guidelines.

One Retinoblastoma World

Retinoblastoma is a very great challenge – for children, parents, survivors and the medical professionals who dedicate their lives to making ours better.  Yet this challenge and our collective experience gives us an even greater opportunity to work together to overcome it.

Our One Retinoblastoma World meeting brings together parents, survivors, medical professionals and research scientists.  The event encourages conversation and collaboration to address the challenges described above, and many more.

This is a unique forum for parents and survivors to ask questions, network with leading retinoblastoma specialists and researchers, and discuss best ways to achieve optimal care. By hearing different perspectives, asking questions, sharing ideas and listening to one another, we can progress.

3 Reasons Parents and Survivors Need to Participate in One Rb World

  • Network with other parents, survivors and professionals
  • Help increase understanding of retinoblastoma and its impacts
  • Help develop real-world solutions to the challenges experienced

As medical professionals and researchers around the world continue to debate health care access policy and therapies, One Rb| World has been an empowering breath of fresh air, uniting our retinoblastoma community to address the many patient-focused challenges we face.

Parents, children and survivors have important lived experience of this cancer.  Our immense knowledge can inform and guide medical professionals, research scientists and one another as we work together to create a world in which no child or family suffers needlessly from retinoblastoma.

We look forward to seeing you at future One Retinoblastoma World events!

Discover Past One Rb World Events

A diverse roster of speakers and topics are addressed at One Rb World meetings.

We are currently planning One Rb World 2024, which will take place 15 – 17 October in Honolulu, Hawaii, USA.  Event details, including venue, registration, hotel booking options and program will be available soon.

View sessions from our 2017, 2020 and 2021 programs, which were live-streeamed, and read read more about each event.

One Rb World 2021: read more, and watch session videsos.

One Rb World 2020: read more, and watch session videsos.

One Rb World 2017: read more, and watch session videsos.

A pink banner with the words “save the date” spans the top of the image. Diamond Head in Honolulu is bathed in light, under a slightly cloudy blue sky. The One Rb World logo includes a pink flower for Hawaii. Text reads: One Retinoblastoma World, Honolulu, Hawaii | October 15-17, 2024

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