Sarcoidosis or something else?

[April04]

I've had breathing difficulties for about a year.  In February they finally figured out I had pneumonia.  A followup CT scan in April also found inflammation of the nodes in the upper central lungs...and fluid in the 'fissure' between lobes in lungs plus something 'dark' in opposite lung.
Within 2 weeks I had a lung biopsy and bronchoscopy...and now hold my breath waiting for results.  After bronchoscopy I was told lungs are clear and whatever it is is only in nodes in upper chest - has not moved into the lungs.
As I read about sarcoidosis it sounds like it affects multiple organs.  Has anyone only had lungs affected?  What were symptoms?  My other options are 'more malignant' such as lymphoma (cancer).  Could there be other options other than sarcoidosis or lymphoma?   Has anyone else been through this waiting game?  Any tips to share or things to watch for?
I also have significant pain in lower right abdomen and fibroids in uterus.  I'll know more about those after another CT scan next week.  After upper CT scan I'm afraid of what they'll find in an abdominal scan.  
I'm looking for information, shared experiences and helpful web sites.  Thanks for sharing.

[National Jewish]

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.  However, sarcoidosis usually effects only the lungs or hilar lymph nodes in the upper central lungs.

The granulomas that are caused by sarcoidosis can appear the same as those in other diseases such as tuberculosis, interstitial lung disease, fungal diseases, farmer’s lung, and berylliosis.  The first step in determining if sarcoidosis is the cause is a careful examination.  Only after the known causes of granulomas have been "ruled out" is the diagnosis of sarcoidosis made.  When the inflammation occurs in the lungs it may show up as cloudy areas on the CT scan.  An experienced radiologist who specializes in the chest may be able to recognize the changes in the CT scan for each of these lung diseases.  However it is more common for a biopsy to be needed.  This is a procedure where tiny pieces of tissue are taken for further testing.  When the lung is effected this can be done through a bronchoscopy, like you had done.  This is a procedure where a tube is passed through your nose into your windpipe to look into your lungs.  A biopsy provides more specific information about the cells of the granuloma.  Generally this testing is needed to know for sure which lung disease is causing the changes on the CT scan.

Inflammation in the lungs can cause shortness of breath, wheezing or cough, often a dry cough.  In some people, the symptoms go away completely with or without treatment.  In other people the inflammation leads to permanent scarring or fibrosis.  There is no way to predict the chances of fibrosis for a particular individual.  The cause of sarcoidosis is unknown.

[Ellis7]

If lymphoma or cancer is suspected, a PET scan may be in order.
http://cpmcnet.columbia.edu/dept/radiology/pet/p_scan.html
Who Should Have a PET Scan?
Excerpt:
"An essential diagnostic technique for cancer patients, PET can help refine cancer findings, alter treatment plans, and sometimes help patients avoid unnecessary surgeries. Oncology PET is used to:

Diagnose lung, colorectal, esophageal, head and neck cancers, as well as lymphoma "
===================================
http://www.lymphomainfo.net/lymphoma/whatis.html
What is Lymphoma?
Excerpt:
"Lymphoma is a serious condition. Lymphoma has indeterminate symptoms so it is sometimes hard to diagnose.  Unfortunately, other medical problems often appear as lymphoma symptoms (infections and "Cat Scratch Fever" are two).  "
=====================================
http://www.epler.com/wsarc.html Sarcoidosis
http://www.sarcoidosisonlinesites.com/
http://www.sarcoidcenter.com/
==============================
It sounds like you need to have more test results before a diagnosis can be made. I've been thru a similar thing; unknown mass in lungs; despite 3 bronchoscopies, lung needle biopsy,
numerous CT scans, and PET scan, they couldn't diagnose it. I was recommended for lobectomy RLL several times but didn't have it;
I would have lost 25% of my lung but they might have been able to
diagnose the mass. Latest CT scan 2 mo ago showed size had not increase in over 2 yr and probably a benign process.  My pulmonologist would say my lung mass could be any of 50 different things; among those mentioned as possibilites; BOOP, chronic necrotizing aspergillosis, Valley Fever, MAC, hammertoma, carcinoid, BAC, blood vessel tangle.

I was diagnosed with prostate Ca last summer; just finished Cyberknife radiation treatment.

So hang in there, get the necessary tests; PET scan is expensive but you might need it.

[Jane1]

I have sarcoid diagnosed 2002 after Needle Biopsy and mass was in the upper right lobe of the lung - a small(?) shadow, fingernail sized.  You are right Sarcoidosis is Sytematic - But it only affected my Lung and 8 months ago the mass had vanished!
I did suffer shortness of breath, prior to diagnosis and also tiredness, cold sweats and some tingling sensations in my face and hands ( which is also a symptom of Pernicious Anemia which I suffer from ) I know the waiting game - My bronchoscopy was clear too, having to have a biopsy was a shock but the result was a relief! As I said Sarcoid can affect many parts of the body but is most prevelant in the lung, I hope you will get a result soon, the waiting game is the worst of all, I sympathise with you and know exactly how you feel.  But can't offer you any answers, the only thing is try not to let the fears of results take too much out of you, even after my diagnosis which was better than I expected it took me months to lose that horrible feeling that the doctors got it wrong.  

All the best
J

[April04]

Thank you for the great information and links.  You don't know how good it feels to not feel so alone in this.

[Riker1964]

If you do find you have Sarcoidosis, please visit http://www.sarcinfo.com

They are leading a clinical study using ARB's and ABX that is actually putting Sarcoidosis into remission.

Take care and God Bless.