Castleman Disease

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Talking With Your Doctor TOPICS

What should you ask your doctor about Castleman disease?

As you cope with Castleman disease (CD) and its treatment, we encourage you to have honest, open discussions with your doctor. Feel free to ask any question that's on your mind, no matter how small it might seem. Here are some questions you might want to ask. Be sure to add your own questions as you think of them. Nurses, social workers, and other members of the treatment team may also be able to answer many of your questions.

  • 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?
  • Are there other tests that need to be done before we can decide on treatment?
  • Are there other doctors I need to see?
  • How much experience do you have treating CD?
  • Should I get a second opinion before starting treatment? Can you suggest someone?
  • What treatment choices do I have? Do we need to start treatment right away?
  • Which treatment do you recommend, and why?
  • What side effects are there to 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 involve? 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?
  • What would we do if the treatment doesn't work or if the CD recurs?
  • What type of follow-up will I need after treatment?
  • Am I eligible for clinical trials of any new treatments?

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.


Last Medical Review: 06/11/2012
Last Revised: 06/11/2012