Diagnosis of Castleman’s Disease

Because Castleman’s Disease is rare, and its symptoms are often similar to those caused by other diseases, it can be hard for a doctor to diagnose. Your doctor may first suspect you have a different illness, and, unfortunately, this can cause the diagnosing process to take longer.

To find out what is causing your symptoms, your doctor will probably take the following steps:

Take a medical history

Your doctor will ask about your symptoms. He or she will also want to know about any other medical conditions you have, your family history, and any possible risk factors you may have for Castleman's Disease.

Have a physical examination

During the examination, your doctor will check your lymph nodes, spleen, and liver. The most common cause of swollen lymph nodes is infection, so your doctor will also be looking for any kind of infection.

Order tests

Your doctor may order blood tests to check for infections, elevated IL-6 levels, or any other signs of Castleman’s Disease. He or she might also order imaging tests. These could include X-rays, computed tomography (CT) scans, magnetic resonance imaging (MRI), ultrasound, or positron emission tomography (PET) scans, which may show swelling or lumps (swollen lymph nodes) or other problems that could be causing your symptoms. Imaging tests might be especially important if you don’t have any swollen glands that your doctor is able to see or feel.

Take a biopsy

While the results of the examination and tests may lead your doctor to believe you have Castleman’s Disease, the only way to be sure is to do a biopsy. This means surgically removing an enlarged lymph node and then having a pathologist (a doctor who studies tissue changes) examine it under a microscope. There are specialists known as hematopathologists who have specific training and experience to examine and diagnose lymphoproliferative disorders such as Castleman’s Disease. You may want to ask your doctor if a hematopathologist will review your lymph node if it is removed.

Helpful tips for preparing for your doctor’s appointment

  • Bring a pen and paper so you can take notes.
  • Consider bringing along a friend or family member so you will have help keeping track of the information you get.
  • Keep track of your symptoms so that you can talk about how you have been feeling. We have created a tool to help you do this. It is called the Symptoms Checklist.
  • Bring a list of all your questions. The tool we have created to help you get the information you need is called Sample questions for your doctor if you have been diagnosed with Castleman's Disease.

Hear from Carl about the path to his diagnosis, and how he learned about Multicentric Castleman’s Disease.

Recognizing Symptoms and Receiving the Diagnosis