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 doctors. 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 might 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?
  • Do I need other tests 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 a doctor or treatment center?
  • What treatment choices do I have? Do we need to start treatment right away?
  • 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?
  • 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?
  • 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.

The American Cancer Society medical and editorial content team
Our team is made up of doctors and master’s-prepared nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Last Medical Review: July 7, 2014 Last Revised: May 23, 2016

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