“It’s estimated that at least 90% of patients with sarcoidosis will experience lung involvement. Chest x-rays are often used to determine the nature of the disease. However, the results of this imaging can cause confusion for sarc patients- your doctor might tell you that the images indicate a certain “stage” of sarcoidosis. What does this mean? Is it like the stages of cancer? Being told you have “stage three” or “stage four” pulmonary sarcoidosis sounds bad- but what does it really mean?

Hopefully, your doctor gives you an accurate explanation of what the stages mean. However, too often we hear from patients who are concerned about which stage they have, what it means, or how long until they progress to the next stage. The stages of sarcoidosis should not be viewed in the way that stages of cancer are- they do not indicate progression of the disease.

In cancer, staging is a way to indicate the size of the cancer tumors, if it has spread to surrounding tissue, or spread to other organs entirely. It indicates progression- in stage IV cancer, the cancerous cells have spread to other parts of the body, making it harder to recover from and requiring a more aggressive, full-body treatment.

In sarcoidosis, staging is a way to indicate the location of granulomas- the lungs, the lymph nodes, or both- and the nature of the disease. If anything, the stages are an easy way for doctors to categorize their sarcoidosis patients, and should not be seen as an indication of severity.”

Foundation for Sarcoidosis Foundation (The Stages of Pulmonary Sarcoidosis- What Do They Really Mean? — Foundation for Sarcoidosis Research)