Multiple Pulmonary Cysts yet never smoked

I am 43 yr old female that was recently hospitalized over night for c/o of chest pain and pressure with intermittent SOB and chronic fatigue.  Stress test showed to be normal yet by chance a CAT scan showed "multiple/numerous" pulmonary cysts. One yr ago I had a normal/clear chest xray, therefore I was sent to a Pulmonary specialist.  She has stated she is not sure what is going on with me but does not feel we are looking at the big C.  I am scheduled for a bronchoscopy and biopsies on the 23rd. I am so unsure of what I am facing, there is such limited information regarding pulmonary cysts available online.  I am a RN of over 20 years, so I am looking for some type of information... anything to point me in a direction of "possibles".  I have NEVER smoked, not a day in my life... I continue to have pressure and discomfort in my sternum that takes my breath at times.  I still find myself so fatigued, I feel I could sleep 12 hours or more a day and still not feel rested.  Any suggestions or information you can share would be so much appreciated. Thank you...

[National Jewish Health]

What you describe on the CT scan suggests the diagnosis of intrapulmonary bronchogenic cysts.  These usually occur near the tracheal bifurcation into right and left main-stem bronchi, but also not uncommonly more peripherally in the substance of the lung.  The differential diagnosis of such cysts includes:  1) congenital cysts, often asymptomatic but can become infected and usually evident earlier in life; 2) infection such as Echinococosis a tapeworm or tuberculosis (TB); and diseases of uncertain cause such as sarcoidosis and lymphangiomyomatosis (LAM).  Your pulmonologist is correct in her assertion that these cysts are very unlikely to be cancer.

One’s liver is commonly infected by the Echinococosis (>60%) but less frequently when the lungs are the primary site.

Sarcoidosis is a common disease that rarely presents only as bilateral multi-cystic disease.

A more likely explanation for your CT findings, fatigue and shortness of breath would be the relatively uncommon disease, lymphangiomyomatosis (LAM), this disease associated with another disease, tuberous sclerosis complex (TSC).  The CT scan is the most sensitive technique for detecting this disease, much more sensitive than the chest x-ray, and often abnormal when the chest x-ray and pulmonary function tests (PFTs) are normal.  The gross appearance of LAM lungs is of enlarged lungs, diffusely cystic, with dilated air spaces as large as 2.0 cm in diameter.  The microscopic findings are quite specific.  The diagnosis of LAM is most definitively established by open lung biopsy, rather than by bronchoscopy.  Successful bronchoscopic diagnosis with transbronchial biopsy, even with proper staining, is uncommon.

I suggest that you discuss the above with your pulmonologist and ask if she thinks that any of the above diagnoses would be consistent with the CT scan.  If infection is a strong consideration, bronchoscopy could be very useful.  If not, diagnostic studies might appropriately include an open lung biopsy, the least invasive being video assisted thoracic surgery (VATS).  This allows for a more generous sampling of lung tissue.

You might also want to request that the CT scan be reviewed by a sub-specialist, a thoracic radiologist.

Please let us know how this works out for you.

Good luck.