• Subscribe to Our Email Newsletter – Visions of Hope
  • Home
  • Contact Us
WE C Hope
  • Link to Facebook
  • Link to Instagram
  • Link to LinkedIn
  • Link to Youtube
  • Link to Mail
  • About WE C Hope
    • Our Mission, Values, and Goals
    • Our History
    • Daisy and Rati
    • Daisy’s Story
    • Rati’s Story
    • Meet Our Team
    • Chapters and Partners
    • Contact Us
  • Find Hope
    • Rb Overview
      • How the Eye Works
      • Rb Biology
      • Unilateral Rb
      • Bilateral Rb
      • Extraocular Rb
      • Trilateral Rb
      • Genetics
      • Signs & Symptoms
      • Referral & Diagnosis
      • Treatments
      • Care After Treatment
      • Prognosis
      • Glossary
    • Know the Glow
      • Fundal (Red Eye) Reflex and Red-Eye Reduction
      • White Eye Reflex
      • Photo Challenge
      • White Eye and Rb
      • White Eye and Adults
      • PhotoRED Technique
      • Next Steps
      • Examining the Fundal / Red Reflex
    • Medical Care
      • Diagnosis and Staging
      • Genetics
      • A Therapeutic Alliance
      • Medical Procedures
      • Treatment
        • Enucleation
        • Focal Therapy
        • Chemotherapy
        • Radiation Therapy
        • Transplant
        • Side Effects
      • Clinical Research
      • Surviving Hospital
      • International Care
      • End of Treatment
      • End of Life Care
    • Child Life
      • More Than Play
      • Procedure Support
      • Pain Management
      • Special Eyes
      • Psychological Support
    • Living With Rb
      • Children
      • Parents
      • Grandparents
      • School Life
      • Eye Care
      • Bereavement
      • Focus on Hope
    • Family and Friends
    • Through Our Eyes
    • Other Organizations
  • Programs
    • Awareness Campaigns
      • Alphabet of Hope
        • 2025-26 Alphabet – #RbChildLife
        • Previous Alphabets of Hope
      • World Rb Week
      • Gold Ribbon Month
      • International Childhood Cancer Day
    • Rati’s Challenge
      • Retinoblastoma in LMICs
      • Kenya National Rb Strategy
      • Early Detection
      • Child Life & Family Support
      • In Memory of Jayne and Bella
    • One Rb World
      • Best Practice Guidelines
      • One Rb World Map
      • Global Research Community
      • One Rb World Conference
    • Supporting Families
      • Retinoblastoma Information
      • Help for Individual Families
      • Social Media Groups
      • Virtual Events
      • USA Family Days
      • Family Focus at One Rb World
  • Events
    • Fundraising Events
    • Rb Family Days & Weekends
    • One Rb World Conference
    • Save The Date
    • Recent Events
  • One Rb World
    • About the Conference
    • View Past Sessions
    • One Rb World 2026
    • One Rb World 2024
    • One Rb World 2021
    • One Rb World 2020
    • One Rb World 2017
  • Give Hope
    • How Your Money Helps
    • My Story
    • Donate
      • Donate Online Now
      • Donate by Post
      • In Kind Gifts
      • Leave a Legacy
    • Fundraise
      • Create a Fundraising Page
      • WE C Hope Merch
      • Hold Your Own Event
      • WE C Hope Events
      • Sporting Challenges
      • Overseas Challenges
      • Corporate Partnerships
    • Volunteer
      • Volunteer Opportunities
  • News & Media
    • WE C Hope Blog
    • Visions of Hope eNews
    • Media Resources
  • Chapters & Partners
    • Canada
    • UK
    • USA
    • Kenya – Partner
  • Donate
  • Click to open the search input field Click to open the search input field Search
  • Menu Menu
You are here: Home1 / Retinoblastoma Resource2 / Medical Care3 / Questions to Ask the Medical Team and Yourself
A child life specialist uses a toy cat with removable eye to help a young girl receiving chemotherapy cope with eye removal and artificial eyes.

Give hope - DONATE NOW!

Questions to Ask the Medical Team and Yourself

Asking questions helps us gather information and make informed decisions.

Throughout this Retinoblastoma Resource, you will find lists of questions to ask the medical team and yourselves when making decisions about your child’s care.  Following requests from some parents, we have compiled this page with signposts to the individual lists.

Finding Your Medical Team

Your child should be treated by an ophthalmologist (eye doctor) and oncologist (cancer doctor) who are experienced in treating retinoblastoma and work together to plan and deliver treatment.  Always ask the doctors to clarify what experience they have in treating children with retinoblastoma.

Questions to Ask When Choosing Your Child’s Doctors        

Medical Procedures and Informed Consent

Before a procedure, you will be asked to sign a consent form, giving permission for it to be done.  Informed consent means you clearly understand about the procedure, why it’s being done, what it involves, its potential risks, side effects, and benefits, when you sign the form.

 Questions to ask about Medical Procedure Informed Consent

Read More About Common Medical Procedures in Rb Care

Clinical Trials and Informed Consent

Informed Consent means you fully understand the tests, therapy, follow-up, risks and benefits before allowing your child to receive the treatment.

When your child is receiving treatment as part of clinical research, you have a right to see and keep a copy of the complete protocol document before signing the informed consent form.

To fully understand the clinical trial treatment proposed for your child, here are some valuable questions to ask the investigating doctor or research assistant.  This list of questions covers study design, tests, treatment and follow up, and administration.

Questions to ask the Investigator

Read More About Clinical Trials

Treatment Options

When your child’s doctor recommends a medical intervention of any kind, always ask questions to help you assess the options.

Questions to Ask When Evaluating Any Treatment Option

Questions to Ask About Your Personal Values and Goals for Treatment

Questions to Ask when Making Your Treatment Decision

How to Effectively Review Your Treatment Decision with the Doctor

International Care

Important questions must be put to the doctors and those helping you gain visas, travel and housing. You must also answer your own difficult questions to ensure your child’s life is protected, along with the wellbeing and unity of your entire family.

Questions to Ask About International Care

Read More About Seeking International Care

Enucleation – Making the Decision

Recommendation to remove your child’s eye will be based on tumour size and position, risk to life, age, health of the other eye, and chance of cure with other therapies. Surgery will only be done after full discussion with you

Questions to Ask When Considering Enucleation

Read More About Enucleation, Pathology and Post-Surgery Care, Orbital Implants and Prosthetic Eyes.

Chemotherapy

Chemotherapy is the most common non-surgical therapy for retinoblastoma.  Anti-cancer medications are given either to shrink the tumour to enable focal therapy, or because cancer has spread outside the eye or has high risk of relapse after enucleation surgery.  Several chemotherapy drugs are used in combination to treat retinoblastoma, and treatment is given over varying timescales, depending on the reason for treatment.

Questions to Ask About Regimens and Protocols – the treatment plan

Questions to Ask About Intra-Arterial Chemotherapy

When to Call the Doctor During Chemotherapy

Read More About Chemotherapy

Focal Therapy

Focal treatments are laser, cryotherapy, chemotherapy and brachytherapy (radioactive plaque) delivered directly to a specific part of the eye or to tissues surrounding it.  These procedures are done in the operating room during an Examination Under Anaesthetic (EUA). Repeated treatments are usually needed to destroy tumours.

These treatments may be used separately or in combination with other therapies, such as systemic chemotherapy. As primary treatment, they are effective only for small tumours that do not threaten vision.

Systematic chemotherapy may be given to shrink tumours so they can be “finished off” with focal therapies.  Chemotherapy alone rarely cures intraocular tumours. Good outcomes are achieved by following chemotherapy with laser and/or cryotherapy, repeated at monthly intervals until the tumour is a flat scar that remains inactive.

Both laser and cryotherapy are important to destroy recurrent growth of tumours when they are still small.

Each page detailing the individual focal therapies includes a list of questions to ask the doctor.

Laser (photocoagulation)

Focused beams of light are used to kill small tumours, both by destroying their blood supply and directly killing the tumour cells

Cryotherapy

Nitrous oxide is used to cool a probe outside the eye, at the site of the tumour. This freezing treatment is best for small tumours in the periphery of the retina.

Periocular Chemotherapy Injection

Anti-cancer drugs can be injected into the tissues or space surrounding the eye.

Intravitreal Chemotherapy Injection

Chemotherapy can be injected directly into the fluid middle of the eye to treat seeds, only when the main tumour has been controlled with other therapies.

Brachytherapy (Plaque) and Radiotherapy

High-energy rays are targeted at tumours to destroy cancerous cells. Radioactive plaque and external beam radiotherapy can be used to treat retinoblastoma. These questions will help you discuss the proposed treatment with your child’s doctors so you can make fully informed decisions about therapy and how to support your child.

Questions to Ask the Doctor About Radiation Therapy

Read More About Radiation Therapy

Stem Cell and Bone Marrow Transplant

This is an intensive therapy for trilateral and extraocular retinoblastoma. After the child is given super high dose chemotherapy, stem cells are infused to rebuild the bone marrow.  Transplant is a complex procedure with significant risks and potential complications, and a long recovery time. Ask all the questions you need to before giving consent.

Questions to Ask The Doctor About Stem Cell and Bone Marrow Transplant

Read More About Stem Cell and Bone Marrow Transplant

Give life and sight to a child with eye cancer today

DONATE

Share this page
  • Share on Facebook
  • Share on X
  • Share on WhatsApp
  • Share on Pinterest
  • Share on LinkedIn
  • Share on Tumblr
  • Share by Mail
  • Link to Instagram
  • Retinoblastoma Overview
    • How the Eye Works
    • Retinoblastoma Biology
    • Unilateral Retinoblastoma
    • Bilateral Retinoblastoma
    • Extraocular Retinoblastoma
    • Trilateral Retinoblastoma
    • Genetics of Retinoblastoma
    • Global Incidence
    • Signs and Symptoms
    • Referral and Diagnosis
    • Treatments
    • Care After Treatment
    • Prognosis
    • Retinoblastoma Glossary
  • Know the Glow
    • Fundal (Red Eye) Reflex and Red-Eye Reduction
    • White Eye Reflex
    • Photo Challenge
    • White Eye and Rb
    • White Eye after Rb Diagnosis
    • White Eye and Adults
    • PhotoRED Technique
    • Next Steps
    • Examining the Fundal / Red Reflex
  • Medical Care
    • Questions to Ask the Medical Team and Yourself
    • Diagnosis and Staging
      • Staging Systems
      • Multidisciplinary Team and Tumour Board
      • Treatment Plan and Care Pathway
      • Hospital Packing Tips
    • Retinoblastoma Genetics
      • Rb Genetics Explained
      • Mosaic Mutations
      • MYCNA Retinoblastoma
      • Genetic Counseling
      • Genetic Testing
      • Genetic Test Results
      • Pre-implantation Genetic Diagnosis (PGD)
      • Genetics Glossary
    • A Therapeutic Alliance
      • Your Child’s Doctors
      • Good Communication
      • Resolving Conflict
      • Second Opinions
      • Changing Doctors
      • Medical Staff
    • Medical Procedures
      • Informed Consent
      • Procedure Pain
      • Blood Draw
      • Bone Marrow Aspiration
      • Bone Scan
      • Chest X-ray
      • CT Scan
      • Echocardiogram
      • EUA
      • Eye Pressure Test
      • General Anaesthetic
      • Hearing Tests
      • Inserting an IV
      • Intrathecal Injection
      • Lumbar Puncture
      • MRI Scan
      • Radionuclide GFR
      • Subcutaneous Injection
      • Taking a Temperature
      • Transfusion
      • Ultrasound of the Eye
      • Vision Testing
      • Vision Testing – Support Your Child
      • Vision Testing – Just For Kids!
    • Treatment
      • Risk of Under-Treatment and Over-Treatment
        • Reduce Risk of Under-Treatment and Over-Treatment
      • Treatment Decision Making Guide
        • Step 1 – Acknowledge Your Thoughts and Feelings
        • Step 2 – Understand Your Decision-Making Style
        • Step 3 – Find Your Expert Team
        • Step 4 – Understand Shared Decision Making and Informed Consent
        • Step 5 – Set an Intention to Make Balanced Decisions
        • Step 6 – Learn About Retinoblastoma
        • Step 7 – Evaluate Your Options
        • Step 8 – Consider Your Values and Goals
        • Step 9 – Manage Disagreement and Conflict
        • Step 10 – Make Your Decision
        • Step 11 – Review Your Decision
        • Step 12 – Support Your Child and Yourself
        • Review the 12 Decision Making Steps
      • Enucleation
        • Making the Decision
        • Eye Removal Surgery
        • Orbital Implants
        • Types of Orbital Implant
        • Side Effects
        • Pathology
        • After Surgery
        • Coping with Other People
        • Artificial Eyes
        • Artificial Eye Care
      • Focal Therapy
        • Laser
        • Cryotherapy
        • Periocular Chemotherapy
        • Intravitreal Chemotherapy
      • Chemotherapy
        • Chemotherapy for Rb
        • Intra-Arterial Chemotherapy
        • Regimens and Protocols
        • During Treatment
        • Central Venous Catheter
        • CVC Care and Risks
        • Blood Test Results
        • When to Call the Doctor
      • Radiation Therapy
        • Radioactive Plaque
        • Coping With Isolation
        • Radiotherapy
        • Radiotherapy Planning
        • Treatment Process
        • EBRT Side Effects
        • Ask the Doctor
      • Transplant
        • Types of Transplant
        • Transplant Process
        • Coping With Transplant
        • Complications
        • Long-term side effects
        • Ask the Doctor
      • Side Effects
        • Low Blood Counts
        • Pneumonia and Chickenpox
        • Protect Your Neutropaenic Child
        • Pets and Infection Risk
        • Fatigue
        • Pain
        • Hair Loss
        • Nausea and Vomiting
        • Taste Changes
        • Oral Care
        • Skin and Nails
        • Diarrhoea
        • Constipation
        • Bed Wetting
        • When to Call the Doctor
      • Occlusion Therapy (Eye Patching)
        • Introduction to Eye Patching
        • Preparing to Patch
        • Support Your Patching Child
        • Eye Patching – Just For Kids!
    • Clinical Research
      • Clinical Research Introduction
      • Clinical Research Phases
      • Protocol Document
      • Monitoring and Safety
      • Rb Clinical Research
      • Informed Consent
      • Ask the Investigator
      • Ethnography Research
      • Patient-Led Research – A New Approach
      • Patient-Led Research – Challenges and Development
    • Surviving Hospital
      • Advocate for Your Child
      • Packing for Hospital
      • Hospital Life
      • Your Child’s Space
      • Record Keeping
      • Recreation
    • International Care
      • Contacting Doctors
      • Finances and Fundraising
      • Travel and Housing
      • Questions to Ask
    • End of Treatment
      • Celebration
      • Follow Up Care
      • Follow Up Schedule
      • Life-Long Follow Up
      • Removing the Central Line
      • A New Normal
      • Relapse
      • Second Primary Cancers
      • Symptoms of Second Primary Cancers
      • Ask the Doctors
    • End of Life Care
      • Changing Treatment Goals
      • Palliative Care
  • Child Life
    • Child Life is More Than Play
      • The Art of Child Life
    • Procedure Support
      • Stay Calm
      • Make a Plan
      • Medical Play
      • Distraction Play
      • Comfort Positions
      • Giving Eye Drops
      • Support for Needle Procedures
      • Anaesthetic Induction
      • Preparing for Surgery
      • Preparing for Enucleation
      • Imaging Scans
      • HandWashing for Kids
      • Reduce Face Touching
    • Pain Management
      • Know the Signs of Pain
      • Manage Pain
      • Mind-Body Strategies
    • Living With a Special Eye
      • Before Enucleation
      • Going to the Ocularist
      • Making an Artificial Eye
      • Handling the Special Eye
      • Keeping the Eye in Place
      • The Young Child Living With a Special Eye
      • The Older Child Living With a Special Eye
      • When There Is No Eye
    • Psychological Support
      • Reduce Your Stress
      • Infant Massage Training
      • Talking With Kids About Vision Loss
      • Talking About Vision Loss – For Kids!
      • Support and Encourage
      • Coping With Difference
      • Worry Eaters Guide
      • Personal Story Books
      • Youth Retinoblastoma Support at Upopolis
      • Camp Sunshine Rb Week
      • Activities for Isolating With Children
      • Post-Traumatic Stress Disorder in Childhood Cancer
  • Living With Retinoblastoma
    • Children
      • Children Learn From You
      • Sibling Responses
      • Support Siblings
      • Communicate
      • Reduce Stress
      • Tantrums
      • Discipline
    • Parents
      • Emotional Responses
      • Manage Anger
      • Depression and PTSD
      • Look After Yourself
      • Relationships
      • Sharing the News
      • Update People
      • Seek and Accept Help
    • Grandparents
      • Genetic Implications
      • How You Can Help
      • Look After Yourself
    • School Life
      • Effects of Treatment
      • Preparing For School
      • School Activities
      • Artificial Eye Care
      • Infection Control
      • Older Children
      • Advice for Teachers
    • Eye Care
      • Prevent Eye Injury
      • First Aid for the Eyes
      • Nutrition for the Eyes
    • Bereavement
      • End Of Life Care
      • Before the Funeral
      • Acts of Remembrance
      • Parental Grief
      • Sibling Grief
      • Carrying the Torch
    • Focus on Hope
      • False Hope
      • Encourage Hope
      • The First Alphabet of Hope
      • Alphabet of Hope 2018
      • Alphabet of Hope 2019 – #LifeBeyondRb
      • Alphabet of Hope 2020 – #FamilyInSight
      • Alphabet of Hope 2021 – #MindAndBody
      • Alphabet of Hope 2022 – #RbCare
      • Alphabet of Hope 2023 – #RbResearch
      • Alphabet of Hope 2024 – #RbEarlyDiagnosis
      • Alphabet of Hope 2025-2026 – #RbChildLife
  • Family and Friends
    • Practical Support
    • Emotional Support
    • Financial Support
    • Giving Gifts
    • Help From Young Friends
    • Words That Help
    • Words That Harm
    • Help During the Holidays
  • Through Our Eyes
    • RAE of Hope
    • Unilateral Rb
      • John (Kenya)
      • Rati (Botswana)
      • Connor (Canada)
      • Ewan (England)
      • Rowan (USA)
      • Bisrat S (Ethiopia)
      • Alexa (Ireland)
      • Linda (Kenya)
      • Lele (China)
      • Katelyn (USA)
      • Jordan (USA)
      • Danielle (Canada)
      • Bright (Cameroon)
    • Bilateral Rb
      • Daisy (UK)
      • Aidan (Canada)
      • Libby and Ella (USA)
      • Angie, Kieran and Cameron (UK)
      • Bisrat E (Ethiopia)
      • Abby (USA)
      • Brady (USA)
      • Sera (Fiji)
      • Katy and Harry (UK)
      • Hope (South Africa)
      • Ross Richard (USA)
      • Bella (Philippines)
      • Peter (Kenya)
      • Jaymee (Australia)
      • Ella Nina (Burundi)
      • Ernest (Kenya)
    • Extraocular Rb
      • Rati (Botswana)
      • Ross Richard (USA)
      • Bella (Philippines)
      • Sera (Fiji)
      • Ella Nina (Burundi)
      • Ernest (Kenya)
      • Bright (Cameroon)
    • Trilateral Rb
      • Libby and Ella (USA)
  • Other Organizations
    • Rb Communities on Social Media
    • Retinoblastoma Organizations
    • Childhood Cancer
    • General Cancer Support
    • Emotional Support
    • Financial Support
    • Transport Providers
    • Hospital Housing
    • Support for Children
    • Support for Siblings
    • Support for Survivors
    • Cancer Camps
    • Wish Granting
    • Disability Support
    • Bereavement Support
Give Hope - Donate Now text in white on a sunny orange gold button background that fades into red, colours reflecting the WE C Hope logo.
Subscribe to Visions of Hope - text in white on a vibran yellow button background that fades into sunny orange gold, colours reflecting the WE C Hope logo.

Retinoblastoma

  • Retinoblastoma Overview
  • Know the Glow
  • Medical Care
  • Child Life Support
  • Living With Retinoblastoma
  • Through Our Eyes

Canada

Special fund at the University Health Network

Who We Are

  • Our Mission, Values, and Goals
  • Our History
  • Daisy and Rati
  • Meet Our Team
  • Contact Us

UK

Registered Charity #: 111-11-33

What We Do

  • One Rb World
  • Rati’s Challenge
  • Awareness Campaigns
  • World Rb Week
  • Supporting Families
  • WE C Hope Blog

USA

501(c)(3) National Non Profit - EIN: 45-4886827

Get Involved

  • Subscribe to Visions of Hope eNews
  • How Your Money Helps
  • Donate Now
  • Fundraise
  • Corporate Partnerships
  • Volunteer

Kenya Partner

Kenya Childhood Cancer Trust
  • FaceBook
  • instagram
  • linkedin
  • youtube
© Copyright 2023 - WE C Hope | Disclaimer | Terms & Conditions | Privacy Policy
Scroll to top Scroll to top Scroll to top
Translate »