What happens after treatment for Castleman disease?
For many people with Castleman disease (CD), treatment may remove or destroy the disease. Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about the CD growing or coming back. (When the disease comes back after treatment, it is called recurrence.) This is a very common concern in people with serious diseases such as CD.
For some people, the CD may never go away completely. These people may get regular treatments with chemotherapy, corticosteroids, or other therapies to help keep the CD in check for as long as possible. Learning to live with CD as a more of a chronic disease can be difficult and very stressful. It has its own type of uncertainty.
If you have completed treatment, frequent follow-up exams are very important for several years after the treatment is finished. The doctors will continue to watch you for signs of recurrent disease, as well as for short-term and long-term side effects of treatment. It is important that you report any new symptoms to the doctor right away, so that relapse or side effects can be treated.
Checkups usually include careful physical exams, imaging tests such as CT scans when needed, and lab tests to look for signs of CD or treatment side effects.
Almost any type of treatment can have side effects. Some may last for a few weeks to months, but others can last the rest of your life. This is the time for you to talk to your health care team about any changes or problems you notice and any questions or concerns you have.
CD may recur (come back) in some people. Multicentric CD may come back as soon as the first year after treatment. If the CD does recur at some point, further treatment will depend on what treatments you've had before, how long it's been since treatment, and your health.
Some people with multicentric CD (especially those who are HIV-positive) may develop non-Hodgkin lymphoma or Kaposi sarcoma at some point. These cancers can be hard to treat, so it helps to diagnose and treat them as early as possible.
Last Medical Review: 06/11/2012
Last Revised: 06/11/2012