What does my CT scan mean?

[eellis]

I am 37,female, diagnosed via a CT scan / PFT's w/ Sarcoid on 8/12/03.  This is my  CT from 2/18/04. What radiographic stage of Sarcoid am I in?  Was told I had asthma all my life but my PFT's show I don't  have it. Is it possible to have had Sarc since I was a kid? My first experience with shortness of breath was when I was 6.

Lungs: Again seen are conglomerate masses within the upper lobes bilaterally with associated traction bronchiectasis and architectural distortion. There is high density consistent with calcifications seen within these masses. These masses are unchanged in comparison to the prior study. Also again identified are numerous bilateral bronchovascular and subpleural nodules. There is mild air trapping which is improved in comparison to the last study.

Pleura: There is no pleural effusion or pleural thickening. Again noted are numerous tiny nodules seen along the pleura bilaterally consistant with paralymphatic distribution of nodules.

Mediastinum: There is paratracheal and subcarinal lymphadenopathy as well as bilateral hilar lymphadenopathy. Some lymph nodes are calcified. The heart is normal in size. There is no pericardial effusion.

Impression:
1. Conglomerate masses with associated traction bronchiectasis seen within the upper lobes bilaterally. Perilymphatic / peribronchovascular distribution of tiny nodules. There is mediastinal and bilateral hilar lymphadenopathy. Some lymph nodes are calcified. These findings are consistant with Sarcoidosis.

2. Evidence for mild air trapping. This is improved in comparison to the prior study

Thank you-
eda

[National Jewish]

Sarcoidosis can mimic asthma, but not from age 6 to age 37.  The results of your pulmonary functions tests (PFTs) may be skewed by the sarcoidosis changes.  You probably have asthma.  To really test for asthma it is best to repeat the PFTs after using a rescue inhaler, an inhaled bronchodilator.  This measures how much the bronchodilator helps your lungs by reversing the problem.  When there is a 20% increase the test is positive for asthma.  There is a complex asthma test that is the gold standard for diagnosing asthma.  This is called a methacholine challenge.  You will blow into a spirometer before and after each increasing dose of an inhaled medicine.  This test is positive for asthma if the result after the inhaled medicine is 20% lower than it was before the inhaled medicine.

Sarcoidosis is a disease that causes small clusters of inflammation, called granulomas.  The granulomas can occur in any area of the body, but are most common in the lungs, lymph nodes, eyes, and skin.  When the inflammation occurs in the lungs it may show up as cloudy areas on the CT scan.

There are 5 stages of sarcoidosis.  The term “stage” refers to the extent of the disease.  Generally this is based upon the chest x-ray.  Stage 0 sarcoidosis is when the chest x-ray looks normal.

When sarcoidosis affects the lungs, it can cause enlarged lymph nodes in the chest.  Adenopathy is another term for enlarged lymph nodes.  In fact, enlargement of the hilar lymph nodes is the most common finding when sarcoidosis affects the lungs.  The effect on the lungs is usually watched over time by checking PFTs.  Hilar adenopathy is considered stage 1 sarcoidosis.  The lung hilar is the area at the center of the lungs near the heart.  Hilar adenopathy can occur by itself without any other health problem.  When this happens it usually causes no symptoms and is of no consequence.

In stage 2 sarcoidosis there are changes in the lungs in addition to the hilar adenopathy.  With stage 3 sarcoidosis there are changes in the lungs that show up as cloudy areas on the chest x-ray or CT scan, but there is no hilar adenopathy.  At stage 4 sarcoidosis there is damage to the lungs in the form of scarring or fibrosis.  Check with your doctor to be sure, but you seem to be at stage 4 sarcoidosis.

[Meg, RN]

Yes, it's possible that you've had sarcoidosis since you were a child. It is common to be misdiagnosed with asthma. Sarcoidosis is a systemic disease, meaning it affects all of your body. The staging system only attempts to determine disease progression involving your lungs.  Dr. Marc Judson had this to say about it:

"It is important to make several points about the staging system. First, is only a chest X-ray staging system. It tells you nothing about involvement of sarcoidosis outside of the lungs. Second, it is in general, a poor staging system. Most sarcoidosis experts do not use it because it's so poor. It has a few major problems. The first is that it's inaccurate. When you do much better views of the lungs by chest CT scans, you find out that the actual stage is different than what appears on chest X-ray. The next problem with the staging system is that it does not predicit the need for therapy, the level of disability, or the prognosis IN AN INDIVIDAL PATIENT with any good degree of accuracy. That is, if you had 100 patients with stage 1 disease and 100 with stage 2, the stage 1 would have better pulmonary function, less pulmonary symptoms, and a better prognosis. BUT many in the stage 2 group would have better pulmonary function, less pulmonary symptoms, and a better prognosis than in the stage 1 group...you can't tell what will happen to one specific patient. Probably the most useful part about the staging system is that patients with stage 4 generally have poor pulmonary function and have the worst prognosis. But I don't put too much weight on this staging system...it is antiquated and doesn't help me much at all."

It is important that you have the correct tests done to determine your systemic sarcoidosis involvement. You can get accurate, up-to-date information about sarcoidosis at www.sarcinfo.com  This is a medical "website" which was created by Dr. Trevor Marshall to conduct an Internet-based observational-clinical-trial of therapies which can cure sarcoidosis.

Many of the patients in the SarcInfo study are health care workers-- Doctors, Nurses and ex-Nurses. Therapy is prescribed and monitored by the patients’ personal physicians. There are over a hundred patients on the Marshall protocol now and over 95% are showing a dramatic improvement without further risk to their health.

Meg Mangin, R.N.