Communicating with doctors is the first vital step in seeking retinoblastoma care in another country.
This process of contacting doctors and discussing appropriate treatment options can be slow and unnecessarily delay essential life-saving care. Honest, open communication is imperative.
Following the suggestions below will help you quickly obtain a plan for appropriate and realistic treatment to protect your child’s life.
Find the Experts and Best Care
Many children’s hospitals and cancer centres around the world have well-earned reputations of excellence. However, retinoblastoma is a rare, complex cancer. Only a handful of centres specialise in its treatment.
Make sure the doctors you contact have appropriate knowledge and experience to treat retinoblastoma. This is especially important if your child is an infant, has cancer in both eyes, cancer outside the eye or very small tumour/s.in only one eye.
Do Not Delay Care
An international second opinion can help you make an informed decision if you are unsure about proposed treatment. However, do not delay care by seeking different opinions in the hope that you will be offered a more appealing treatment. This may put your child’s life at risk, especially if doctors have recommended the affected eye or eyes be removed.
Retinoblastoma grows very fast, and you do not have the luxury of time in choosing treatment. If two doctors agree on proposed eye removal surgery, respect their opinions – they are trying to save your child’s life.
Detailed information on enucleation and what to expect after the surgery.
Ask the Doctor
Use the following “Ask the Doctor” pages for important questions about different treatments.
Follow Up Plan
Discussing follow up before you’ve even decided to travel to a different country for care may seem rather odd. However, this is a vital part of your child’s medical care, and forward planning is essential for international patients.
All children with cancer require close follow up to ensure any recurrence or long term side effects of treatment are detected and treated early. When children receive treatment in attempts to save an eye, follow up is crucial. Children remain at risk of developing new tumours, or relapse of tumours already treated.
When tumours are found early, they can be controlled. If they remain undetected because of poor follow up, they can kill the child. You must understand this before undertaking treatment overseas, so you can plan financially and practically to protect your child’s long term well-being.
The ideal is follow up as close to home a possible. This requires collaboration and clear communication between the international hospital and hospital(s) closer to your home.
When you first talk with doctors at the international centre, ask how they see follow up will work for your child. If they expect you to return to them for all follow up, you will need to consider the implications of this (visas, travel, accommodation, medical bills) and your ability to ensure your child receives appropriate life-saving care.
From the beginning, nurture a working relationship between doctors in your home country and at the international centre. Ask that you be copied on all email and print correspondence. Keep track of the communication and make sure you have copies of all correspondence and medical reports from each centre in your child’s medical folder (see below).
Guidance on building a therapeutic alliance with your child’s doctors.
You will be asked to send your child’s medical records for review. Keep all records well organized in one place so you won’t have to rely on the hospital or doctor’s office to send information for you. This will avoid needless delays.
Do not send originals or your only copy of a document or film (MRI, CT etc) as these may get lost. Make or obtain copies of everything and only send the copy.
If you must send the only copy, keep a record of the named person you sent it to, and their contact details, and send the documents with a reliable international signed-for delivery service such as FedEx or DHL.
Information and guidance on keeping a medical records folder for your child.