Children who undergo transplant for retinoblastoma have very poor chance of survival without treatment.
However transplants are themselves potentially life-threatening, and should not be undertaken lightly.
Ask as many questions as you need to before giving consent for transplant. If you don’t understand what you have been told, ask for clarification. This is a complex procedure, and many parents need repeated explanations
Record the conversations so you can listen to them later at home. Ask a friend to come with you to the consultation to help take notes.
Do not sign the consent form until you feel your questions have been answered, you are confident you understand the process, and comfortable that it is the right decision for your child.
When discussing transplant survival data with doctors, remember that most children with trilateral or extensive extraocular retinoblastoma are considered very high risk. The chances of cure are lower than for children with lower risk cancers, and this may affect the data.
You may want to ask some or all of the following questions to the oncologist or transplant doctor and any doctor from whom you seek a second opinion.
Questions to Ask about Your Child’s Transplant
- What are all the treatment options?
- What are the chances of my child’s survival with these treatments?
- What is the chance of my child’s survival with transplant?
- What is the complete transplant process?
- Will radiation part of initial treatment or conditioning?
- Is this transplant considered experimental or accepted clinical practice?
- What are the risks involved? How likely are they?
- What are the long-term side effects of transplant?
- Can I stay with my child during transplant?
- What will my child’s quality of life be during and after transplant?
- Will she have to take medicines after the transplant7 For how long7
- What are the side effects of these medicines?
- How soon could my child leave hospital if all goes well?
- How soon could we leave the area to return home?
- What will the short, medium and long-term follow-up plan be?
Questions to Ask about the Transplant Facility
- How many paediatric transplants did you do last year?
- What is your success rate for these transplants?
- What are the one, two, and five year survival rates?
- How many transplants have you done for retinoblastoma?
- What success have you had with transplant for retinoblastoma?
- What is the nurse:patient ratio?
- Do all the doctors and nurses have paediatric training and experience?
- What support do you offer? (child life, social worker, chaplain etc)
- What are your anti-infection precautions? (isolation, gown / gloves etc).
- What are your visiting policies?
- What are your food preparation policies?
- How long will we have to wait for transplant?
- How much will the entire transplant cost (including all pre-transplant therapy and post-transplant care)?
- How much will my insurance cover? (if your country requires this)
