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.
Stage one sarcoidosis indicates granulomas in the lymph nodes. Stage two indicates lymph node involvement in addition to granulomas in the lungs. At first, this might appear to be a progressive diagnosis compared to stage one. However, stage three sarcoidosis indicates granulomas present in the lungs, but not in the lymph nodes. This demonstrates how the stages are not a progression. A patient may even go between these stages- you might have stage two sarcoidosis, and then with treatment or time become stage one, or three, or go into remission altogether.
Stage four sarcoidosis is a little bit different than the other three. Stage four indicates scarring in the lungs- pulmonary fibrosis- which is irreversible. Because of this, stage four is the most severe presentation of sarcoidosis. This also contributes to the misconception that the stages of sarcoidosis follow a progression.
The stage of sarcoidosis does not indicate a level of severity- in fact, each “stage” can be at a different level of severity. An individual might have granulomas in their lungs but nowhere else (stage three) and be completely asymptomatic. This kind of sarcoidosis is often caught by accident on an x-ray for another injury or illness, and may not even require treatment. In another case, someone might have granulomas only present in their lymph nodes (stage one), but experience severe pain and swelling, or other complications.
Make no mistake- all stages of pulmonary sarcoidosis can be severe. Any stage could cause serious symptoms and debilitating fatigue. They can require treatments that lead to nasty side effects or other complications. Sarcoidosis is often mistakenly portrayed as a disease that isn’t serious and will go into remission, and here at FSR we know that is unfortunately not always the case. That’s why we make a point to provide patients and physicians alike with as much educational information as we can. Below is a resource explaining the stages of sarcoidosis. Download the brochure to share with your friends, family, doctor’s office, sarc support groups- whoever you think could benefit from it!