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Respiratory Disorders (Expert Forum)
Sarcoidosis or something else?
Answered by
This forum is for questions and support regarding lung and respiratory issues such as: Allergies, Asthma, Bronchitis, Colds - Flu, Chronic Cough, COPD, Cystic Fibrosis, Emphysema, Fibrosis, Lung Abscess, Nasal Polyps, Pleurisy, Pneumonia, Sarcoidosis, Sinusitis, Tuberculosis
Sarcoidosis or something else?
by April04, May 08, 2004 12:00AM
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.
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.
Doctor's Answer
by National Jewish, May 14, 2004 12:00AM
, May 14, 2004 12:00AM
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.
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.
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/
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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