Retinoblastoma Treatment at One Rb World
Monday September 25, 2023
Prompt, appropriate medical care is vital for all children with retinoblastoma. A range of treatments are used depending on extent of the cancer, its risk of spread, and the child’s health and wellbeing. Sessions at every One Rb World explore aspects of medical care, and how we can ensure the best possible outcomes for each child. Below, we share sessions from the 2017, 2020, and 2021 meetings.
Medical professionals, patients, survivors and their families all chew over difficult aspects of retinoblastoma care at One Rb World.
One Retinoblastoma World
Retinoblastoma is a highly curable eye cancer of infancy and early childhood, however, survival rates vary dramatically between developed and developing countries. Many children worldwide lose sight due to delayed diagnosis.
Early diagnosis, access to specialist care during childhood and throughout life, and family and survivor support form a critical triad in the care and cure of all patients. These three factors guide all discussions at One Retinoblastoma World.
The One Rb World conference engages eye and cancer specialists, researchers, parent and survivor advocates from around the world to pursue the best possible care for all children, survivors and their families. This interactive meeting encourages collaboration among the multi-disciplinary delegation, and rigorous international multi-center research that addresses patient priorities. This will ultimately lead to greater knowledge and scientific evidence; improving survival, vision outcomes and psychosocial care.
For more information, visit our One Rb World microsite.
How Is Retinoblastoma Treated?
Treatment of retinoblastoma depends on the number, size and location of tumour(s), whether one or both eyes are affected, whether the cancer has spread or is likely to spread, and the child’s general health and wellbeing.
Eye salvage therapies include laser, cryotherapy (freezing), different types of chemotherapy, brachytherapy (radioactive plaque), and external beam radiotherapy. For many children in high- middle- and low income countries, surgical removal of the eye (enucleation) is the only life-saving treatment.
When retinoblastoma within the eye is advanced, pursuing eye-salvage therapy can seriously endanger life. Children die too often due to delayed enucleation.
After enucleation, detailed examination of the eye (pathology) is vital to identify risk of cancer spread beyond the eye, and appropriate post-surgery care.
Below, we have gathered together eight sessions from three One Rb World meetings, focused on various aspects of retinoblastoma treatment. They include 24 talks, sharing professional and lived experiences from six countries on five continents. Presentation details and timestamps are included below each video.
One Rb World 2017
Our One Retinoblastoma World 2017 conference was held in Washington D.C., USA. The event was hosted by World Eye Cancer Hope at Crystal City Marriott (Arlington, VA) on October 9 to 11.
Questions commonly asked by parents and survivors inspired each session.
Treatment and Consent
Question
What are the different treatment options, when are they best used, and what are the benefits and risks of each? What can I do to make the best decisions for my child? Session
Session Lead
Brenda Gallie, Pediatric Ophthalmologist, Professor of Medical Biophysics & Molecular Genetics & Director of the Retinoblastoma Program, The Hospital for Sick Children, Toronto, Canada; Medical Director, Impact Genetics; Co-Founder, WE C Hope.
00:00 – Toolbox for Treatment of Intraocular Retinoblastoma
Brian Marr, Director of Ophthalmic Oncology, NewYork-Presbyterian/Columbia University Medical Center, New York City, USA.
40:00 – Orbital Retinoblastoma: Mission Possible
Bhavana Chawla, Professor of Ophthalmology, All India Institute Of Medical Sciences, New Delhi Delhi, India.
53:00 – Q & A
Moderator: Brenda Gallie
Enucleation
Question
How do doctors know when trying to save an eye is dangerous, and removing it is the only option? How do we best care for the socket throughout life?
Session Lead
Jonathan Kim, M.D. Director of Retinoblastoma Program, Children’s Hospital Los Angeles, Los Angeles, Caifornia Associate Professor of Clinical Ophthalmology, USC Roski Eye Institute, Los Angeles, California.
00:45 – The Role of Enucleation in 2017 and Beyond
Jonathan Kim, M.D.
14:00 – Reconstruction After Enucleation
Jonathan Kim, M.D. and whole panel discussion
31:26 – Simple Implants and Muscle Placement, and Immediate (Temporary) Prosthetic Eyes for Happy Children.
Brenda Gallie, M.D. Director of the Retinoblastoma Program, The Hospital for Sick Children (SickKids), Toronto, Canada; Professor, The University of Toronto, Toronto, Canada. Medical Director, Impact Genetics; Co-Founder, WE C Hope.
40:10 – “Life with an Ocular Prosthesis: The Early Years and Beyond”
Stephen Haddad, B.C.O, B.A.D.O. Director, Ocular Prosthetics, Inc., Los Angeles, California; and
Greg Dootz, A.A.S. Ocularist, Kellogg Eye Center, University of Michigan Hospital, Ann Arbor, Michigan
High Risk Pathology
Question
How do doctors and parents make the decision about adjuvant chemotherapy
Session Lead
Patricia Chevez-Barrios, M.D. Ophthalmic Pathology, Houston Methodist Hospital/The Retinoblastoma Center of Houston Adjunct Professor, Department of Ophthalmology, Baylor College of Medicine, Houston, Texas.
01:20 – Patients with Probable High Risk Features by Clinical Presentation.
Dan S. Gombos MD FACS Professor & Chief, Section of Ophthalmology, MD Anderson Cancer Center Clinical Co-Director, The Retinoblastoma Center of Houston.
08:20 – High Risk Features, Diagnosis and Reporting.
Patricia Chevez-Barrios, M.D.
19:50 – Treatment Options in High Risk Patients – The Curie Institute Approach
François Doz, M.D. Professor of Pediatric Oncology & Medical Director of Training, Institut Curie, Paris, France, Professor of Paediatrics, University Paris Descartes, Paris, France
33:45 – Treatment Options in High Risk Patients – Children’s Oncology Group Approach.
Murali Chintagumpala, M.D. Co-Director, Brain Tumor Program; Director, Solid Tumor Program; Co-Director, Retinoblastoma Program,Texas Children’s Hospital/The Retinoblastoma Center of Houston Professor, Baylor College of Medicine, Houston, Texas.
49:30 – Q & A
Moderator: Patricia Chevez-Barrios, M.D.
Parent Advocate
Question
How can I best prepare / support / advocate for my child during tests and treatment to protect their wellbeing?
Session Lead
Kaitlyn Hougham, Research Coordinator, Patient Engagement Strategy, The Hospital for Sick Children, Toronto, Canada.
01:00 – Canadian Retinoblastoma Patient Engagement Strategy
Kaitlyn Hougham,
13:30 – Advocating for the Child with Retinoblastoma
Sarah Green RN, Pediatric Nurse Practitioner, Division of Hematology-Oncology, Children’s Hospital Los Angeles, USA.
29:30 – Preparing, Supporting and Advocating for the Child with Retinoblasoma
Amanda Brody MS, Certified Child Life Specialist, St Jude Children’s Research Hospital, Memphis, USA.
40:00 – Parent Intuition
Sarah Hancock, Parent.
One Retinoblastoma World 2020
Our One Retinoblastoma World 2020 conference was held virtually on October 3 and 4, 2020. The event was hosted jointly by World Eye Cancer Hope, the International Retinoblastoma Consortium, Canadian Retinoblastoma Research Advisory Board, and Canadian Retinoblastoma Society.
Retinoblastoma Treatment Guidelines and New Treatments
With timely screening, diagnosis, referral, treatment, and follow-up delivered in a systematic way by a multidisciplinary team, most children with retinoblastoma are cured, many with useful vision. Yet many families everywhere do not receive optimal care.
This session provides an overview of what treatment guidelines are and how they can help in low-, middle-, and high-income countries as well as new developments in retinoblastoma treatment options. Both implementation of proven therapy and testing of new therapies in any setting are discussed, with a focus on intra-arterial chemotherapy and the sustained-release topotecan episcleral plaque.
Session Leads
* Katherine E. Paton, MD FRCSC, Clinical Professor, Head of Ocular Oncology and Medical Director Diagnostic Ultrasound, University of British Columbia, Vancouver, Canada; Head of Comprehensive Ophthalmology, Vancouver Coastal Health Authority, Vancouver, Canada; Tumour Group Chair, Ocular & Orbital Site, British Columbia Cancer Agency, Vancouver, Canada.
And
Leslie G. Low, Member, Canadian Retinoblastoma Research Advisory Board; Parent of Triplet Retinoblastoma Survivors, Edmonton, Canada.
01:30 – Triple Treatment
Leslie G. Low
12:15 – Guidelines and Retinoblastoma Treatments
Katherine E. Paton, MD
23:55 – National Retinoblastoma Program in Ghana
Vera A. Essuman, MBChB, Senior Lecturer & Head of Ophthalmology, College of Health Sciences School of Medicine and Dentistry Department of Surgery, University of Ghana, Accra, Ghana; Pediatric Ophthalmologist/Ophthalmic Surgeon, Korle-Bu Teaching Hospital, Accra, Ghana.
37:50 – New Treatments: The Discovery Journey
Brenda L. Gallie, MD, FRCSC, Ophthalmologist & Director, Retinoblastoma Program, The Hospital for Sick Children (SickKids), Toronto, Canada; Professor, University of Toronto, Toronto, Canada; Founder, International Retinoblastoma Consortium; Co-founder, World Eye Cancer Hope.
53:35 – Psychosocial Score as an Aspect of Treatment Decisions in Egypt
Sameh E. Soliman, MD, Ph.D., Ass. Professor of Ophthalmology, University of Alexandria, Egypt. Clinical Fellow, paediatric ophthalmology and Strabismus, Hospital for Sick Children (Sickkids), Toronto, Canada.
57:55: Roundtable Discussion
Above panel joined by:
Ashwin C. Mallipatna, MD, FRCS(C), Staff Ophthalmologist – Retinoblastoma Program, The Hospital for Sick Children (SickKids), Toronto, Canada; Assistant Professor, University of Toronto, Toronto, Canada.
One Retinoblastoma World 2021
Our One Retinoblastoma World 2021 conference was held virtually on October 1 to 3, 2021. The event was hosted by World Eye Cancer Hope, with organizing team members in the USA and Australia – who will co-host our 2024 meeting in Honolulu, Hawaii (the location planned for 2021).
All About Prosthetic Eyes
Ocular prosthetics are familiar to many retinoblastoma survivors. This session provided an overview of ocular prosthetics, the fabrication process and care of the eye, and strategies to support coping for young children visiting the ocularist.
Session Lead
Marissa D. Gonzalez President and Founding Board Member, World Eye Cancer Hope USA; Retinoblastoma Survivor, Los Angeles, California, USA.
00:35 – Role of the Ocularist in the Retinoblastoma Patient Journey
Matthew Milne Ocularist, Toronto, Ontario, Canada.
15:07 – Migration of the Implant: Patient Perspective
Marissa D. Gonzalez
19:29 – Pets, Play and Prosthetic Eyes
Camille Loyer, Ocularist, Loyer Artificial Eyes, Melbourne, Victoria, Australia.
33:05 – Q & A
Moderator: Sandra E. Staffieri, BAppSc(orth), PhD, Retinoblastoma Care Coordinator, Royal Children’s Hospital, Victoria, Australia; Research Fellow/Clinical Orthoptist, Centre for Eye Research Australia, University of Melbourne, Melbourne, Australia.
The Dreaded Drops
This session focused on the dilating eye drops that are used to fully examine the eyes. They remain the primary cause of great angst and distress for the child having the drops, the caregiver who supports the child, and the health professional who instils them. This repeated, invasive, but very necessary part of any eye exam can set the infant or child up for a lifetime of distress related to medical procedures.
We examined eye drops from the perspective of the clinician, the child, the parent, and the Child Life Therapist who works to mitigate the distress.
Session Lead
Sandra E. Staffieri, BAppSc(orth), PhD Retinoblastoma Care Coordinator, Royal Children’s Hospital, Victoria, Australia; Research Fellow/Clinical Orthoptist, Centre for Eye Research Australia, University of Melbourne, Melbourne, Australia.
01:02 – The Clinician’s Perspective
Sandra E. Staffieri
16:38 – The Parent’s Perspective
Belinda Faure Retinoblastoma Parent, Melbourne, Victoria, Australia.
23:28 – The Child Life Specialist’s Perspective
Olivia Larkens Certified Child Life Therapist, Royal Children’s Hospital, Melbourne, Victoria, Australia.
32:12 – Q & A
Moderator: Paula Dillon, BN, PostGradDip Mid, MMid, Retinoblastoma Parent, Brisbane, Queensland, Australia.
Final Words
Retinoblastoma is an aggressive cancer, posing threats to both life and sight. Its treatment is complex, and challenges to effective care are experienced globally by medical professionals, affected children and their families. The most effective treatment is shaped by clear evidence and agreed guidelines, tailored to the individual child.
These sessions highlight different facets of care affecting the medical experience and outcome for the child and family. They raise key questions that impact decision-making about retinoblastoma treatment, and discuss practical solutions to advance medical care.
They also show the importance of national and global collaboration to increase the evidence needed to improve both treatment and supports. Working together, retinoblastoma specialists, researchers, parents, patients, survivors, and other advocates can create the best care possible for every child.
We have deep gratitude for everyone who contributes to the medical care discussion at One Rb World, to active research, and partnerships that advance care around the world. Your energy and dedication saves lives and sight, and gives our community hope.
Aloha One Retinoblastoma World 2024!
Please join us in Honolulu, Hawaii for One Rb World 2024, Tuesday 15 – Thursday 17 October, 2024. The meeting will be held just before the International Society of Paediatric Oncology World Congress which takes place Thursday 17 – Sunday 20 October, 2024 at the Honolulu Convention Center.
We look forward to sharing more conversation, knowledge, experience, and support. Three days of networking and collaboration to advance care for every child, survivor, and family. All professionals, scientists, families, survivors and children welcome – there’s a full program for kids too! Visit our conference microsite for more details.
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One Rb World 2020: Inspiring Global Support, Research and Action.
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Reflecting on One Rb World 2017
Washington D.C. hosted the 4th One Rb World meeting on October 9 – 11, 2017, including the first US National Family & Survivor Day. WE C Hope USA President, Marissa Gonzalez, reflects on her experience planning and hosting the event, and what the One Rb World community means to her.
Ethnography: A New Frontier in Retinoblastoma Research
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About the Author
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.
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