Treating Castleman Disease

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 be based on whether the CD is localized (unicentric) or multicentric, as well as other factors when these are important. 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.

Thinking about taking part in a clinical trial

Clinical trials are carefully controlled research studies that are done to get a closer look at promising new treatments or procedures. Clinical trials are one way to get state-of-the art treatment. In some cases they may be the only way to get access to newer treatments. They are also the best way for doctors to learn better methods to treat illnesses such as Castleman disease. Still, they are not right for everyone.

If you would like to learn more about clinical trials that might be right for you, start by asking your doctor if your clinic or hospital conducts clinical trials. See Clinical Trials to learn more.

Considering complementary and alternative methods

You may hear about alternative or complementary methods that your doctor hasn’t mentioned to treat your disease or relieve symptoms. These methods can include vitamins, herbs, and special diets, or other methods such as acupuncture or massage, to name a few.

Complementary methods refer to treatments that are used along with your regular medical care. Alternative treatments are used instead of a doctor’s medical treatment. Although some of these methods might be helpful in relieving symptoms or helping you feel better, many have not been proven to work. Some might even be dangerous.

Be sure to talk to your treatment team about any method you are thinking about using. They can help you learn what is known (or not known) about the method, which can help you make an informed decision. See Complementary and Alternative Medicine to learn more.