How were you diagnosed

What deteremined your diagnosis? I had a pulmonologist tell me that he would base my diagnosis and treatment on my ACE level and CT. He said he would only do a biopsy if I wanted to be 100% sure. I work for my family physician and when he got my reports back my ACE level was elevated and my CT showed enlarged lymph nodes, scarring, calcified lymph nodes and granulomas. He said I needed a biopsy. When I told him what the consulting pulmonologist had said about the biopsy, my family doc said it would be very dangerous to treat me for sarcoidosis if I didn't have it and a biopsy is the only way to be sure.
My question is....how was everyone else diagnosed? Did everyone have a biopsy? Any suggestions as I am so confused since the lung specialist said I didn't need the biopsy but my doctor (who I do trust, I just don't want an unnecesarry procedure)says I do.

Thanks

Edited September 16, 2010 at 1:39 pm

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I was diagnosed with biopsy. However my case is a little different. I had granulomas growing on my eye socket. Mine wasn't a lung biopsy, but rather a biopsy of the granulomas on my eye socket. You are very fortunate to have a knowledgeable pcp.

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2001 had eye problems, hey did a battery of blood tests and scans to 'rule out' other diseases. Determined Sarcoid.

2007 more issues. They did a lymph node biopsy. definitely sarcoid

2008 skin biopsy, again sarcoid

But I agree with your doctor. It could be dangerous to treat as if it were sarcoid and not know for sure. I would definitely do a biopsy.

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Bronchoscopy

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My daughter had a pet scan which showed many enlarged lymph nodes. Sarcoidosis mimics renal cell cancer therefore a lung biopsy was done to confirm sarcoidosis.

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They were reasonably sure I had lymphoma, but said to rule out sarc they would need to biopsy several lymph nodes. They went in through the base of the neck and fished out 5 lymph nodes all in the lung area and it turned out to be sarc. It would be good to have the biopsy done. 100% sure is the only way to go. If by some odd chance it was lymphoma, it would be sad to waste time treating something that is not.
Jp

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They were reasonably sure I had lymphoma, but said to rule out sarc they would need to biopsy several lymph nodes. They went in through the base of the neck and fished out 5 lymph nodes all in the lung area and it turned out to be sarc. It would be good to have the biopsy done. 100% sure is the only way to go. If by some odd chance it was lymphoma, it would be sad to waste time treating something that is not.
Jp

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A biopsy would be nice but it is not absolutely necessary. Your CT has probably settled the matter and you should proceed to treatment but it is your call. A biopsy does have it's own problems and if your pulmo is satisfied I would not really be worried unless the treatment is ineffective. Gene

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Bronchoscopy

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I say bronchoscopy....For me, it was super easy and GREAT drugs!!! Honestly, I would need to know COMPLETELY before starting such an extensive medication regimen. My bronchoscopy was the easiest thing I have had to do all year...

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Sarcoidosis is a diagnosis of exclusion, last time I looked into it there were over sixty recognized diseases that caused granulomas. Since the symptoms of Sarcoidosis mimic various other diseases you keep ruling out other diseases with tests until all you have left is sarcoidosis. I had bronchoscopy not to specifically diagnose Sarcoidosis but to rule out lymphoma. The results of the biopsy showed granuloma formation but that alone was not a diagnosis, that combined with the rest of symptoms allowed them to make a diagnosis of sarcoidosis. If you doctor is satisfied it is probably due to the whole of the symptoms you are presenting. That is my two cents worth.

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Hi,
I was diagnosed after a very painful, invasive lymph node biopsy through the side of my chest into the lung area. For me it was the absolute way to be diagnosed because everythig else they were testing CT, MRI, blood, PET was pointing toward lymphoma(as sarc is a very good mimic). The specialist told me the biopsy is the definitive way to diagnose sarc. Wish it hadnt been the case for me tho, it was awful. Good luck!

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What kind of biopsy was the pulmonologist talking about? I had the bronchoscopy, but I had two different doctors recommend it. That is how I was diagnosed. I was told that the bronchoscopy is one way to biopsy the lymph nodes in the chest but not the only way. Ask questions and maybe get a second pulmonologist opinion. Good luck!

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Lung biopsy.

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My doctor thought I had lung cancer or possibly lymphoma, so I had a bronchoscopy which revealed nothing, then a mediastinoscopy to remove some of the swollen lymph nodes in my chest for a biopsy. The results came back as sarcoidosis. Blood work did not help establish the diagnosis; all of mine including ACE was normal at the time.

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The perfect 3rd opinion and doc to manage Sarc is a rheumatologist. He is an inflammatory disease specialist who treats sarc as a multisystem disease. He will refer you to specialists as needed to collect more info on which to base his treatment. Since all your specialists (and you will end up with many) can not treat your sarc and should not treat outside their area of expertise (nor do they know how to monitor Sarct as thoroughly as the rheumie) it makes sense that the rheumie should be the 'capt.' of your sarc health care team.

Just my two cents - works for me :)

Regards,
I.

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Bronc/biopsy to make sure it was not lung cancer. It was sarc.

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Ace is not a dependable measurement. I had mine diagnise by biopsy and have not been in remission forever (4+ years).

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ACE level showed high, ultra sound of liver and spleen showed them enlarged & spleen with lumps. Did a biopsy of neck lymph node - out patient -no problem just an extra neck wrinkle. Showed granuloma and PCP said sarcoidosis. Definately have a biopsy.

The rest of my sarc symptoms I have self diagnosed, and my opthomologist agrees. I have yet to see any other specialist about sarc. I do have an appointment with a dermatologist in a few weeks to look at a skin sore.

DJ

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After being on Prednisone since Feb after comfirmed dx for neuro-sarc, I would never go on Pred without knowing without a doubt that I had Sarc. Pred is usually the treatment they start with for sarc. It has to many bad side effects to take it if you don't need it. My two cents worth.

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I was in your situation over 10 years ago (when I was diagnosed). I do not know about sarc in other areas but it can be very difficult to diagnose in the lungs (especially if you do not have it in your lymph nodes). I had two bronchoscophy's and they both came back inconclusive. My plum told me I could have a open lung biopsy but it is a major operation (they can get a bigger sample to test). He also told me that It was my choice but he didn't feel it was woth the risk since the biopsy might yield the same results as the bronc did. All other tests and bloodwork ruled out other diseases and granduloma could be seen on the CT scans. I decided not to get the biopsy and my Dr did not start me on pred until I started to decline rapidly which was approx 2 years after diagnosis. I have been off and on pred, metotrexate, humira for the last 7 years or so. I am currently on 10mg of pred after being drug free for a year or so (had a flare up). Y ou have to weigh the pro's and con's. Good Luck!

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