Castleman disease

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Preparing for your appointment

By Mayo Clinic staff

If you have signs and symptoms associated with Castleman disease, you're likely to start by seeing your family doctor or a general practitioner. You may then be referred to a doctor who specializes in treating blood disorders (hematologist).

Because appointments can be brief, and there's often a lot of ground to cover, it's a good idea to be well prepared. Here's some information to help you get ready, and know what to expect from your doctor.

What you can do

  • Write down any symptoms you're experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
  • Write down key personal information, including any major stresses or recent life changes.
  • Make a list of all medications, vitamins and supplements that you're taking.
  • Ask a family member or friend to come with you to your appointment. Sometimes it can be difficult to remember all the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
  • Write down questions to ask your doctor.

Your time with your doctor is limited, so preparing a list of questions can help you make the most of your time. List your questions from most important to least important in case time runs out. For Castleman disease, some basic questions to ask your doctor include:

  • What's the most likely cause of my symptoms?
  • Are there other possible causes for my symptoms?
  • What kinds of tests do I need? Do these tests require special preparation?
  • Can surgery cure me?
  • What's my prognosis?
  • What medications are available, and which do you recommend?
  • What types of side effects can I expect from these drugs?
  • I have other health conditions. How can I best manage them together?
  • Is there a generic alternative to the medicine you're prescribing?
  • Are there any brochures or other printed material that I can take with me? What websites do you recommend?

What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over points you want to spend more time on. Your doctor may ask:

  • Do you have any other health conditions, such as HIV/AIDS or Kaposi's sarcoma?
  • When did you first begin experiencing symptoms?
  • Have your symptoms been continuous, or occasional?
  • How severe are your symptoms?
  • Does anything seem to improve your symptoms?
  • What, if anything, appears to worsen your symptoms?
References
  1. Aster JC, et al. Castleman's disease. http://www.uptodate.com/home/index.html. Accessed July 19, 2011.
  2. Castleman disease. American Cancer Society. http://www.cancer.org/acs/groups/cid/documents/webcontent/003093-pdf.pdf. Accessed July 19, 2011.
  3. About Castleman's disease. International Castleman's Disease Organization. http://www.castlemans.org/ICDO_booklet_v3.pdf. Accessed July 19, 2011.
  4. Pica F, et al. Transmission of human herpesvirus 8: An update. Current Opinion in Infectious Diseases. 2007;20:152.
  5. Bandera B, et al. Treatment of unicentric Castleman disease with neoadjuvant rituximab. Chest. 2010;138:1239.
  6. Reddy D, et al. HIV-associated multicentric Castleman disease. Current Opinion in Oncology. In press. Accessed [month day, 2011]. Accessed July 19, 2011.
DS01000 Sept. 3, 2011

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