Questions to Ask About Castleman Disease

It’s important to have honest, open discussions with your cancer care team. Ask any question, no matter how small it might seem. Some questions to consider:

When you’re told you have Castleman disease (CD)

  • Is my CD localized or multicentric?
  • Has my biopsy been reviewed by a pathologist who is an expert on CD?
  • Do I also have HIV infection and AIDS? If so, how does it influence my prognosis (outlook) and treatment of CD?
  • Do I need other tests before we can decide on treatment?
  • Are there other doctors I need to see?

When deciding on a treatment plan

  • How much experience do you have treating CD?
  • Should I get a second opinion before starting treatment? Can you suggest a doctor or treatment center?
  • What treatment choices do I have? Do we need to start treatment right away?
  • Am I eligible for clinical trials of any new treatments?
  • Which treatment do you recommend, and why?
  • What are the side effects of the treatments that you recommend?
  • What can I do to help reduce the side effects I may have from the treatment?
  • What should I 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 my daily activities?
  • What is my outlook for survival?
  • What are the chances of the CD coming back with these treatment plans?

During treatment

  • What would we do if the treatment doesn’t work or if the CD comes back?
  • What type of follow-up will I need after treatment?
  • What symptoms or side effects should I tell you about right away?
  • How can I reach you on nights, holidays, or weekends?
  • Do I need to change what I eat during treatment?
  • Are there any limits on what I can do?
  • Should I exercise? What should I do, and how often?
  • Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed? 

After treatment

  • Are there any limits on what I can do?
  • What symptoms should I watch for?
  • What kind of exercise should I do now?
  • What type of follow-up will I need after treatment?
  • How often will I need to have follow-up exams and tests?
  • How will we know if the cancer has come back? What should I watch for?
  • What will my options be if the cancer comes back?

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 activity schedule.

Keep in mind that doctors aren’t the only ones who can give you information. Other health care professionals, such as nurses and social workers, can answer some of your questions. For more about speaking with your health care team, see Talking With Your Doctor.


The American Cancer Society medical and editorial content team

Our team is made up of doctors and oncology certified nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Last Revised: February 8, 2018

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