How to Treat Castleman Disease
Find a doctor that specializes in Castleman Disease., Ask the doctor questions., Inform the doctor of any changes in symptoms., Undergo tests.
Step-by-Step Guide
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Step 1: Find a doctor that specializes in Castleman Disease.
Since CD is rare, your doctor or oncologist may not be experienced in treating it.
Try to find an oncologist with experience in treating CD.
The Castleman Disease Collaborative Network (CDCN) maintains a database of known skilled doctors.
Note that over the course of your treatment, you might have to see a hematologist, oncologist, and surgeon.These doctors may diagnose your condition as being either localized or multicentric CD.
Localized (unicentric) Castleman Disease is the most common type.
It only affects a single group of lymph nodes.
It is usually treated with surgical removal of the mass.
Multicentric Castleman Disease (MCD) is a rarer form, wherein the masses appear on multiple lymph nodes and organs.
It may be treated with both surgery and chemotherapy.Make sure that your doctor knows if you are HIV-positive.
While not all cases of MCD are caused by HIV, HIV puts you at increased risk for it. -
Step 2: Ask the doctor questions.
It is important that you are informed about all possible treatment options for your CD.
You also want to make sure that your doctor has the right experience and tools to treat this disease effectively.
You might ask:
Have you ever treated this disease before? If not, can you refer me to a doctor who has? What types of tests are you going to need to do? Do you think that my CD is related to HIV? Was my biopsy reviewed by a pathologist who has experience with CD? Is the CD localized or multicentric? When do I need to start treatment? How long will treatment last? Do I qualify for any current clinical trials? Will I need to undergo follow-up care after treatment? , If you have localized CD, you may not exhibit any symptoms, but if symptoms develop, let your doctor know immediately.
These symptoms may indicate that the disease is worsening.
They may also demonstrate that you have MCD instead of unicentric.
These symptoms may include:
Enlarged lymph nodes Fever Night sweats Loss of appetite and weight loss Weakness and fatigue Shortness of breath Nausea and vomiting Skin rashes , There are a number of tests your doctor may administer to determine the exact type of CD that you have.
This will help your doctor decide which type of treatment is right for you.
Typical tests for CD include:
Blood and urine tests:
Your doctor will take samples of blood or urine to test for elevated levels of a substance called Interleukin-6 (IL-6).
Imaging tests:
Imaging tools including CT scans, PET scans, MRI scans, or ultrasound will look for growths on your lymph nodes to identify where the affected nodes are located.
Lymph node biopsy:
Through a minimally invasive surgery, your doctor will extract a sample of the affected tissue and study it.
This may help diagnose a microscopic subtype of your CD.
This subtype will help identify how aggressively the CD might spread as well as your prognosis. -
Step 3: Inform the doctor of any changes in symptoms.
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Step 4: Undergo tests.
Detailed Guide
Since CD is rare, your doctor or oncologist may not be experienced in treating it.
Try to find an oncologist with experience in treating CD.
The Castleman Disease Collaborative Network (CDCN) maintains a database of known skilled doctors.
Note that over the course of your treatment, you might have to see a hematologist, oncologist, and surgeon.These doctors may diagnose your condition as being either localized or multicentric CD.
Localized (unicentric) Castleman Disease is the most common type.
It only affects a single group of lymph nodes.
It is usually treated with surgical removal of the mass.
Multicentric Castleman Disease (MCD) is a rarer form, wherein the masses appear on multiple lymph nodes and organs.
It may be treated with both surgery and chemotherapy.Make sure that your doctor knows if you are HIV-positive.
While not all cases of MCD are caused by HIV, HIV puts you at increased risk for it.
It is important that you are informed about all possible treatment options for your CD.
You also want to make sure that your doctor has the right experience and tools to treat this disease effectively.
You might ask:
Have you ever treated this disease before? If not, can you refer me to a doctor who has? What types of tests are you going to need to do? Do you think that my CD is related to HIV? Was my biopsy reviewed by a pathologist who has experience with CD? Is the CD localized or multicentric? When do I need to start treatment? How long will treatment last? Do I qualify for any current clinical trials? Will I need to undergo follow-up care after treatment? , If you have localized CD, you may not exhibit any symptoms, but if symptoms develop, let your doctor know immediately.
These symptoms may indicate that the disease is worsening.
They may also demonstrate that you have MCD instead of unicentric.
These symptoms may include:
Enlarged lymph nodes Fever Night sweats Loss of appetite and weight loss Weakness and fatigue Shortness of breath Nausea and vomiting Skin rashes , There are a number of tests your doctor may administer to determine the exact type of CD that you have.
This will help your doctor decide which type of treatment is right for you.
Typical tests for CD include:
Blood and urine tests:
Your doctor will take samples of blood or urine to test for elevated levels of a substance called Interleukin-6 (IL-6).
Imaging tests:
Imaging tools including CT scans, PET scans, MRI scans, or ultrasound will look for growths on your lymph nodes to identify where the affected nodes are located.
Lymph node biopsy:
Through a minimally invasive surgery, your doctor will extract a sample of the affected tissue and study it.
This may help diagnose a microscopic subtype of your CD.
This subtype will help identify how aggressively the CD might spread as well as your prognosis.
About the Author
Jacob Ryan
Experienced content creator specializing in pet care guides and tutorials.
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