Parents and patients can seek second opinions before or during treatment, or in relation to follow up care.
Retinoblastoma is complex. Doctors regularly seek consultation with colleagues. A second opinion can help if you are unsure about proposed treatment or the doctor’s ability to treat your child, or if previous treatments have failed.
Many parents hesitate to seek second opinions for fear of creating conflict.
Do not seek second opinions in private. Explain concerns to your child’s doctor, and ask for their support. A good doctor will embrace your request, and give recommendations. If the doctor is resistant, consider changing doctors.
Three Forms of Second Opinion
There are three ways a second opinion can be given
- Ask that your child’s case be reviewed by the Rb tumour board.
- Send medical records to another doctor for review.
- See another specialist, often at another hospital.
A retinoblastoma tumour board is a multidisciplinary group of ophthalmologists, oncologists and specialist nurses at a retinoblastoma specialist centre. The group usually meets weekly to discuss children in active treatment.
They will look at the facts of your child’s situation, and your concerns, and discuss treatment options. Ask your child’s doctor to explain the board’s conclusions.
Increasingly, internet technology means that consultations can take place online without families having to travel great distances to see another doctor. You may locate a retinoblastoma specialist via the internet, or your doctor may contact one or more colleagues at different centres.
Remember that even if you communicate with the doctor whom you would like to give a second opinion, they cannot request your child’s records for confidentiality reasons. You must ask your child’s doctor to initiate communication with the second opinion doctor, and you may have to sign a medical release form.
Ensure that copies of all your child’s medical records are sent to the second opinion doctor, including EUA reports, ultrasound and other scans, and retcam images. You may have to gather these documents yourself, or your child’s doctor may send hem directly.
Ask to be copied on email communications, so you know what has been sent and discussed.
See Another Specialist
If consultation at another hospital cannot be done online, you may need to see the doctor in person. In this case, ensure that copies of your child’s medical records are sent ahead, including all those mentioned above. Ask the doctor to send you the results of any tests they do, and a copy of their report to your child’s doctor.
Do Not Delay Treatment
Be careful not to delay treatment when seeking second opinions. Your child’s cancer may be threatening her life. Do not keep asking for second opinions in the hope that you will be offered an alternative treatment, especially if your child’s doctor has recommended the eye be removed.
The longer you delay treatment, the greater the risk becomes to your child. Retinoblastoma that spreads beyond the eye has a very poor chance of cure, even in developed countries. If two doctors agree on proposed treatment, respect their opinions – they want to save your child’s life.