Sarcoidosis or lymphoma?

[Stormbringer]

I've been pretty absent from the forum for some time now as I've been undergoing tests for the above.

Anybody familiar with sarcoidosis? "They" think I have this or lymphoma. The symtoms are almost identical but I'm putting my money on sarcoidosis.

About six weeks ago my ankle started killing me. After four days it subsided and I blew it off as "I guess I must've twisted it". It came back three weeks ago so I went to the doctor. I also mentioned my shortness of breath after walking a flight of stairs. (I had attributed that to being out of shape). While getting the ankle xrayed they also did a chest xray. The ankle came back clean but here's letter they sent me.

"PA and lateral chest radiographs were performed on the above patient on 2/28/07.

There is abnormal soft tissue density in the paratracheal regions particularly on the right as well as lobulated soft tissue density in the hilar regions compatible with adenopathy. There does appear to be some prominence of the lung interstitium in the left lower lung zone. This possibly could represent sarcoidosis. Lymphoma is also a consideration. A correlation with prior studies and clinical history is necessary. No associated pleural effusion is visualized. Both hemidiaphragms are well visualized. The cardiac silhouette is normal in size.

IMPRESSION:

Hilar and paratracheal adenopathy with possible interstitial disease left lung. Differential includes sarcoidosis and lymphoma. Please correlate with any prior imaging studies and clinical history."

This was written by the Xray MD who had no idea the lymphnodes on the back of my neck have started to swell. Upon receipt, my dr. sent me for a chest CT scan last Friday. Although they're in, I do not know the specific wording, but my doctor said they show lymphnodes swelling in my chest (whether or not in the lung, i don't know). I also had a lymphnode removed from my chin yesterday morning for biopsying. My pulmonolgist seems to be leaning towards sarcoidosis but needs to do further tests to confirm.

For the past week, I thought for sure the biopsy results will show lymphoma, but just today I decided to investigate this little heard of disease called sarcoidosis. What made me practically fall out of my chair was this:

"Joint pain, stiffness, and/or swelling that usually occurs in the first 6 months of the disease, begins suddenly in one or both of the ankles."

I know I'm jumping the gun without the biopsy report but my gut is telling me that i got this: http://www.stopsarcoidosis.org/

Although there is no known cause, as is the case with lymphoma, I've been doing tons of home renovations over the past four years and have been exposed to lots and lots of paint fumes, saw dust, drywall dust, mdf dust, etc... sometimes not with the best dust protection and sometimes with none . I can only attribute this as the cause.

Anybody know anybody that has/had this?

Thanks,
Greg

[MilDoc]

You found the best site for sacrcoidosis, and if that's what the biopsy shows, find an expert in your area even if you have to travel to do it. It can be a very nasty disease. You might also ask about research studies going on at NIH. In NY there should be docs experienced in treating it at any of the major medical schools.

Good luck.

[Sugarman]

I have sarcoidosis. I was diagnosed in 1970 (in my 30's) after eliminating everything else. Initially, I was told it was Hodgkin's disease. My ankles would swell up overnight and it was very painful to walk. Everything would subside during the day. X-rays showed swollen lymph nodes behind my lungs. No other nodes were affected. They wanted to open my chest to look around. I refused. A team of Chinese doctors were in the area with a new procedure using a small probe with a camera and device to take a biopsy. They told me it had never been in this country before. I never tried to verify that. Common practice today. Can't think of the proper term for it. I let them do it and nothing was found. Back then they knew nothing about it and surmised it was spread by birds.
The symptoms went away as quickly as they came and have not resurfaced since. I was told it could start again anytime and in any organ. What organ is attacked determines the seriousness.
I have never done any research since so I don't know what knowledge they have these days. I think I'll check it out.
I hope your symptoms go into remission as well. I wish you the best.

[Greg in Maryland]

Greg

I worked for the Leukemia & Lymphoma Society in their home office in White Plains, New York for a few years. If the diagnosis is lymphoma they are a great resource for patient information and support. Their web address is www.lls.org.

Good luck.

Greg

[Stormbringer]

You might also ask about research studies going on at NIH.

Paul,
Forgive me, but what NIH?
Thanks.

I have sarcoidosis. I was diagnosed in 1970 (in my 30's) after eliminating everything else. Initially, I was told it was Hodgkin's disease. My ankles would swell up overnight and it was very painful to walk. Everything would subside during the day. X-rays showed swollen lymph nodes behind my lungs.

Sugerman,
Glad to hear your great news. Like you at the time, I too am in my 30's. I have read that in some cases it goes into remission on its own, however I don't think I will be that lucky. As I'm sure you know, Hodgkins disease is now classified as a lymphoma, thus Hodgkins Lymphoma or NHL (Non- Hodgkins Lymphoma). The waiting for the results is just as hard as coming to grips with the diagnosis.

Thanks,
Greg

[MilDoc]

Sorry - NIH = National Institutes of Health. First place to usually check for research studies underway or recruiting.

www.nih.gov

[Ed62]

I don't know anything about it, but I just want to say good luck. I'll say a prayer for you.

Ed

[germdoc]

Sounds like sarcoidosis. This should generally be confirmed with a biopsy. If your biopsy shows "non-caseating granulomas", sarcoid's your diagnosis.

If there's just enlarged glands and minimal symptoms, generally it will go into remission and not cause problems. If there is involvement of the lung tissue--interstitial disease--it can cause problems and is often treated. I agree with the above--would find a lung specialist experienced in sarcoid in your area and consult with him. Check with your doctor. You are in a high-density area for doctors!

[Stormbringer]

Greg, thanks for the link, I hope I can stop my lymphoma research
Paul, thanks for the clarification.
Ed, thanks for the kind words.
Jeff, thanks for your positive prognosis.

What's of concern to my pulmonologist are the "oversized noduals" (his words not mine) in the lungs. If you click the pic below to enlarge it you can see the dozen or so that are present. He said they're all relatively small. I wonder if they could be the start of the granualomas. Appointments next week should provide definitve answers.

From my chest CT scan. Click to enlarge.

[germdoc]

Those tiny things are not worrisome at all. There is some major enlargement of the mediastinal (upper chest) lymph nodes there that needs to be pursued. (That ain't normal, in other words.) If your external lymph node biopsy is diagnostic for sarcoid, then I think most docs would not require biopsy of those mediastinal nodes. If not, then you may need a procedure called a mediastinoscopy which is a "minor" surgical procedure. But, we do need some confirmation that non-caseating granulomas are at the root of the lymph node enlargement. There are some rare fungal infections that can simulate sarcoidosis and also tuberculosis, so you would want to have the pathologist stain and if possible culture the node material for these organisms as well.

If you have not have fevers, chills, night sweats, weight loss, or extreme fatigue (what we call "B symptoms"), this would be much less suggestive of a bad problem like lymphoma and more suggestive of sarcoidosis.

Keep in mind the usual disclaimers--I am not your doc, haven't seen you as a patient, this is general advice, consult with your own doc, etc.

[Rand]

I have a good friend who was diagnosed with sarcoidosis a couple years ago. He was uncomfortable for about 2 months but he got better and hasn't had any symptoms since. My bet is that you will be fine.

Rand