Castleman Disease

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Treating Castleman Disease TOPICS

How is Castleman disease treated?

This information represents the views of the doctors and nurses serving on the American Cancer Society's Cancer Information Database Editorial Board. These views are based on their interpretation of studies published in medical journals, as well as their own professional experience.
The treatment information in this document is not official policy of the Society and is not intended as medical advice to replace the expertise and judgment of your health care team. It is intended to help you and your family make informed decisions, together with your doctor.
Your doctor may have reasons for suggesting a treatment plan different from these general treatment options. Don't hesitate to ask him or her questions about your treatment options.

General treatment information

Once you have been diagnosed with Castleman disease (CD), your health care team will discuss treatment options with you. Several different types of treatment can be used for CD:

Your treatment options will depend on the whether the CD is localized (unicentric) or multicentric, as well as other factors. Because CD is rare, it has been hard to do studies to learn the best ways to treat it. Of course, no two patients are exactly alike, so treatment is tailored to each person’s situation.

Based on your treatment options, you can have different types of doctors on your treatment team. These doctors might include:

  • A surgeon
  • A hematologist: a doctor who treats disorders of the blood and lymph system, including CD
  • A medical oncologist: a doctor who treats cancer and similar diseases with medicines
  • A radiation oncologist: a doctor who treats cancer and similar diseases with radiation therapy

Many other specialists might be part of your treatment team as well, including physician assistants, nurse practitioners, nurses, nutrition specialists, social workers, and other health professionals. See Health Professionals Associated With Cancer Care for more on this.

It’s important to discuss all of your treatment options, including the goals of treatment and possible side effects, with your doctors to help make the decision that best fits your needs. In choosing a treatment plan, consider your health and the type of CD. Be sure that you understand all the risks and side effects of the various treatments before making a decision. Ask your health care team questions. You can find some good questions to ask in the section “What should you ask your doctor about Castleman disease?

CD is a rare disease, so not many doctors have much experience treating it. If time allows, it’s often a good idea to seek a second opinion. Getting a second opinion can give you more information and help you feel confident about the treatment plan that you choose. Your doctor should be willing to help you find another doctor who can give you a second opinion.

The next few sections describe the types of treatment used for Castleman disease. This is followed by a discussion of the typical treatment options based on whether the CD is localized (unicentric) or multicentric, as well as other factors when these are important.

Last Medical Review: 07/07/2014
Last Revised: 07/07/2014