Retinoblastoma is a complex childhood cancer with significant impacts during treatmet and beyond, often continuing throughout life. What are the least discussed subjects in Rb research and care? Why do they matter, and how can research in these areas improve care and quality of life? Rb Survivor, Abby White explores 10 varied topics affecting patients, survivors, and family members at different stages of life.
Intraocular retinoblastoma is classified and staged to help doctors describe the degree of cancer in a child’s eye, determine best treatment options, define potential for cure / eye salvage, and compare impact of different therapies. Each eye is classified to define potential for safely saving the eye / vision. Stage of bilateral Rb is based on the worst affected eye, as an indicator of risk to the child’s life. When an eye might be classified into one of two groups, the higher risk group should be selected. This reduces risk of eye loss or life threatening relapse due to under-treatment.
The earlier cancer is diagnosed, the easier it is to treat, often requiring less intense therapy and fewer invasive procedures that have lower cost physically, emotionally and financially. Awareness of childhood cancer is key to achieving early diagnosis, saving lives and limiting the burden of cancer treatment on the child, family and wider society.
Our Global Rb Scientist, Dr. Helen Dimaras, is leading a major initiative to advance digital pathology consultations at our pathology Lab in Nairobi, thanks to a $100,000 grant from Grand Challenges Canada. The digital RbCoLab will significantly improve care for each child by rapidly identifying their true risk and need for further treatment after their eye has been removed.
People often ask me incredulously “why would parents refuse eye removed surgery if it’s the only way to save their child’s life?” This is a very important question. Understanding the complex answers helps us care for families to ensure children have the best chance of cure.
Two children. The same affliction. Drastically different outcomes. Yet each story represents the most common reality for children with retinoblastoma in these respective parts of the world.