Questions to Ask About Rhabdomyosarcoma

It’s important to have honest, open discussions with your cancer care team. Ask any question you have, no matter how minor it might seem. For instance, consider asking these questions:

Before getting a biopsy

• How much experience do you have doing this type of biopsy?
• What will happen during the biopsy?
• How long will it take to get the results from the biopsy?

If a rhabdomyosarcoma has been diagnosed

• What kind of rhabdomyosarcoma do I (does my child) have?
• Where exactly is the tumor?
• Has the cancer spread beyond where it started?
• Do we need other tests before we can decide on treatment?
• Which risk group does the cancer fall into, and what does that mean?
• How much experience do you have treating this type of cancer?
• Will we need to see other doctors?
• Who else will be on the treatment team, and what do they do?

When deciding on a treatment plan

• What are our treatment options?
• Are there any clinical trials we might want to consider?
• What do you recommend and why?
• What's the goal of treatment?
• Should we get a second opinion? How do we do that? Can you recommend a doctor or cancer center?
• What are the risks and side effects to the suggested treatments?
• Which side effects start shortly after treatment and which ones might develop later on?
• Will treatment affect my child’s ability to grow and develop?
• Could treatment affect my child’s ability to have children later on?
• How soon do we need to start treatment?
• What should we do to be ready for treatment?
• How long will treatment last? What will it be like? Where will it be done?
• How will treatment affect our daily lives (school, work, etc.)?

During and after treatment

Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply, but getting answers to the ones that do may be helpful.

• How will we know if the treatment is working?
• Is there anything we can do to help manage side effects?
• What symptoms or side effects should we tell you about right away?
• How can we reach you or someone on your team on nights, weekends, or holidays?
• Who can we talk to if we have questions about costs, insurance coverage, or social support? 
• What are the chances of the cancer coming back after treatment? What might our options be if this happens?
• What type of follow-up and rehab will be needed after treatment?
• Are there nearby support groups or other families who have been through this that we could talk to?

Along with these sample questions, be sure to write down some of your own. For instance, you might want more information about recovery times so that you can plan your work or school schedules.

Also keep in mind that doctors aren't the only ones who can provide you with information. Other health care professionals, such as nurses and social workers, may have the answers to some of your questions. You can find out more about speaking with your health care team in The Doctor-Patient Relationship and How to Talk to Your Child's Cancer Care Team.