Outlook (Prognosis) for People With Castleman Disease

Survival rates are often used by doctors as a standard way of discussing a person’s outlook (prognosis). Some people may want to know statistics on the outlook for those in similar situations, while others may not find the numbers helpful, or may even not want to know them. If you don’t want to know about the outlook for people with different types of Castleman disease (CD), stop reading here and skip to the next section.

It’s hard to get accurate numbers on the outlook for people with CD because it is rare. Most statistics on the disease come from small numbers of patients who were treated at a single center or hospital. These numbers might not accurately reflect the outcomes for all people with CD.

The numbers below come from a study of nearly 200 people treated for CD in many different centers. The study divided people into groups based on whether the CD was unicentric or multicentric, its microscopic subtype, and whether the patient was infected with HIV (HIV+) or not infected (HIV-).

The 3-year disease-free survival (DFS) rate refers to the percentage of patients who were still alive and had no signs of CD at least 3 years after it was diagnosed. Of course, many people went much longer than 3 years without any signs of CD (and many were likely cured).

Type of Castleman Disease

3-Year Disease-Free Survival

Unicentric, hyaline vascular, HIV-

93%

Unicentric, plasma cell or mixed, HIV-, OR
Multicentric, hyaline vascular, HIV-

79%

Multicentric, plasma cell, HIV-

46%

HIV+ (multicentric)

28%

Even when taking the factors above into account, disease-free survival rates are at best rough estimates. If you have CD, your doctor can tell you how well these numbers might apply to you, as he or she knows your situation best.

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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