Stronger Together: Patient Engagement in Retinoblastoma Research

The Canadian Retinoblastoma Research Advisory Board is working with patient families to guide future research priorities. Engaging parents and survivors can lead to improved health outcomes. Read on and sign up today.

Pathology slide showing advanced retinoblastoma

The Anatomy of Retinoblastoma Pathology

Expert retinoblastoma pathology identifies cancer spread to outer layers of the eye or the optic nerve, guiding post-operative care. Accurate, timely pathology is key to long-term survival when a child has advanced cancer.

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

Parents and Survivors Can Help Doctors Create Great Retinoblastoma Care

Being the parent of a child with retinoblastoma, or living with the effects of this cancer, can be frustrating. We look at a few challenges and ways we can help the medical community advance care.

Abby walks across a vast desert plain, alongside a Massai warrior. Abby is wearing neutral coloured trekking gear and sunhat, carrying a backpack with a drinking tube visible attached to one strap, and holding walking poles. Her companion is wearing wraps of blue, black, red and gold checkered and striped cloth, and various bead ornaments, and carries a walking pole.

Different Perspectives – Meet Our Founder

Abby White, WE C Hope co-founder and volunteer CEO, shares her experience of living with the consequences of bilateral retinoblastoma, and her very personal journey to the organization’s birth.

Marissa and Dr Kim

CHLA Retinoblastoma Family Day

Meeting others who know understand life with retinoblastoma is a priceless gift. Marissa Gonzalez reflects on an afternoon of fun, friendship, knowledge and hope at the first CHLA Retinoblastoma Family Day.

A fuzzy cloud shows recurrence of a previously treated tumour.

Visualizing Cancer Treatment

Have you ever wondered what happens in a child’s eye during retinoblastoma treatment? We explore four of the most common eye-saving treatments here. Below each, you will find a link to further information that includes advantages, disadvantages, side effects and questions to ask the doctor.

This image has two sections. The top portion is a pictorial description of the TNM Staging, and comparison with the IIRC (comparison in brackets). Six images show progression of cancer through the different TNM stages, from small tumours confined to the retina in T1a (A) and T1b (B) to large tumours and seeds in T2a (C/C) and T2b (C/D). These first four images are grouped as “intraocular”. T3a-e (E) shows distress to tissue surrounding the eye. This image is indicated as high risk for extraocular spread. T4 (no IIRC comparison) shows an eye that has ruptured completely. This last image is described as extraocular. The lower section of the image shows average age at diagnosis in developed and developing countries, and the timeline to extraocular spread. The smiling child on the left is pictured with white pupil. The caption below reads: “North America: Unilateral Dx mean 27 mo | Bilateral Dx mean 15 mo”. The child on the right has a completely ruptured eye. The caption below reads “Kenya: Unilateral Dx mean 36 mo | Bilateral Dx mean 26 mo”. An arrow points from the left to right photo and reads “6 to 11 mo DELAY dx”.

Staging Intraocular Retinoblastoma

Retinoblastoma is staged to help doctors describe the degree of cancer in a child’s body, define potential for cure / eye salvage, determine best treatments, and compare impact of different therapies. Each eye is staged separately to define potential for safely saving the eye and vision.

Poster showing a child with one eye glowing white and the other, red. Caption above reads "a white glow in a child's eye could be a sign of cancer". Instructions below describe the PhotoRED technique.

How Do We Achieve Early Diagnosis of Retinoblastoma?

Retinoblastoma specialists agree that early diagnosis of eye cancer is a child’s best hope of survival, retaining some vision or their eye. Yet around the world, thousands of children die, and more than half of children who are cured lose at least one eye. We consider the potential and limitations of six solutions to improve early diagnosis.

The Lincoln Memorial, lit up in gold against a deep blue sky.

Revisit One Rb World and SIOP 2016 (Dublin)

We are looking forward to One Rb World and SIOP 2017 in Washington D.C. this October. Read about the 2016 One Rb World meeting and International Society of Paediatric Oncology World Congress in this blog mini series, originally shared later last year.

Dublin Convention Centre was lit up gold every night during the SIOP World Congress, celebrating the childhood cancer gold ribbon.

Alfred Knudson Memorial Session

A special session at the 2016 World Congress of Paediatric Oncology was hosted in memoriam of Alfred G. Knudson, Jr., MD, PhD, who died in July. Knudson developed his “two-hit hypothesis” after years of observing children with retinoblastoma, and this now forms the backbone of cancer genetics. The session focused on most effective staging for retinoblastoma, identifying and treating high risk children.