Lung biopsy results and sarcoidosis probability

[Tinker]

Hi everyone,

My lung biopsy was on Dec 8th and despite being terrified, the entire experience was great.  I had very little pain (thanks to Fentanyl.)  no pneumothorax or bleeding except on the skin surface (and that was a huge bruise.)  The facility was wonderful and everyone treated me with professionalism and kindness.  I was able to observe the entire procedure as I was on my back and the large screen was on my right.  The nurse in me found this fascinating!

Anyhow, the results came back in 4 days and it was benign!  However, the final pathology indicated "inflammation."  I saw another oncologist who advised me that this may mean sarcoidosis.  I had read about this previously but it sounded so off the wall that I didn't think it would happen to me. 

So, the next step is visiting the pulmonologist.   Sure hope we can take a conservative approach to treating this (if this is indeed what I have) cause I'm not crazy about taking steroids or anything else. 

Does anyone here have sarcoidosis?  I'd be grateful for any info you have.  I've done reading about symptoms but personal experience is what I'd find most informative.  Thanks in advance.

I did a search here to see if anyone had sarcoidosis and found very little info. 

[irish]

Glad you made it through this event without too much negative effects. Good luck with the pulmonologists. Also, Linda196 has sarcoidosis if I remember right and there may be others. Have a good New Year. Irish

[Tinker]

Thanks, Irish.  I'm hoping Linda sees this and gives me some insight.  Happy New Year to you and yours !!  And I'm sooo glad Christmas is over.  lol

[Linda196]

Yes, i was diagnosed with Sarcoidosis in 1979, but one of about 10% with no pulmonary involvement. Because of that, the initial working diagnosis was non-Hogkins, but the differential was made with a scalene node biopsy, since there was nothing to target in the lungs for a biopsy.

At the time of Dx, I was young, mother of a toddler and an infant, anemic, working full time as an ICU nurse, and convinced I just needed more sleep! I had a history of Hashimoto's and chronic inflammatory arthritis, so my doctor was quick to climb on the Autoimmune bandwagon, and within a week and a half of my first complaint (fatigue, grossly swollen ankles and generalized joint pain) and the day of my first Dr visit,  I was in hospital for the biopsy, and 6 days later had a confirmed diagnosis.

I was offered a steroid/chemo regime, heavy duty TB treatment, or a rest and watch approach, and choose the last, looking at a possible 2 years of as much inactivity as I could manage with young children. I think the hope was that I would have the most common form of Sarcoid that would "burn out" in 18 months to two years, the doc could claim a cure, and I'd be off and running again LOL

Didn't quite work out that way, and I developed into what my doc called chronic quiescent Sarcoid with flares, but after 18 months I had recovered sufficiently to return to work, and continued to do so until my Sjogren's Diagnosis in 2003, with occasional leaves to deal with flares, and a minor stroke attributed to the sarc. Flares were mostly limited to clustered formation of gramulomatous lesions, either kidney, liver, intestine or skin, and once in uterine tissue, found incidentally after a scheduled hysterectomy (the surgeon was totally amazed by the pathology report); accompanied by fever (41^oC plus) and fatigue. All resolved within a few months of onset, with symptomatic treatment.

Even now, with my regime of Prednisone, Plaquenil and MTX , I still have sarc flares, so I'm fairly certain that avoiding the "big guns" in early stages didn't cause any change in the course of the disease or alter the outcome so far, and my rheumy agrees with that.

This has been a part of my life for so long, I'm not sure anymore whats pertinent to it specifically, so if you have any questions, please feel free to ask, and I'll try to answer.

[Tinker]

Linda, thanks for your detailed reply.  I am a bit in awe of what you have endured and yet you are still here administering this website. 
You must have a lot more energy than me as I'm just floundering about with undone housework and yard work (actually any kind of work lol)  You do a spectacular job here, Linda!

Wow, you were off work for 18 mos so that tells me you really felt poorly.  Kudos to your doc for his quick diagnosis. 

I'm meeting my local pulmonologist on the 29th and will find out where we go from here.  Were your scalene nodes enlarged?  How many did they take? So glad you avoided the "big guns"  treatment in the beginning.

I don't even know if the tissue recovered in my lung biopsy is available for future testing.  It appears that they have only ruled out CA, AFB, and GMS.

Thanks for sharing your experience with sarcoidosis and how it has impacted your health.  I know where to come with questions in the future.  This website is invaluable.

[Linda196]

Thank you for your kind words, Tinker, and in all honesty, we are very proud of this website, founded by two remarkable women, Spring, on whom we still depend, and Care, whose memory sustains us. We also rely on our wonderful members, who are helpful, supportive, informative and very caring!

As to my energy levels, they are more a matter of compromise than energy! I'm lucky enough to be in a position where my only non-flexible activity is helping in the care of my elderly Mother in Law, and my husband, two sisters in law and a home care worker all take a lot of the impact of that, mine is becoming more of an organizational and advisory role, as is my role in a youth education activity I'm part of, so can be done on my own time, at my desk, just like administrating here. Housework, yard work, even car care has been downsized big time, and even at that, I allow days to complete tasks that used to take hours. The hardest part was accepting that. I have to credit my past nursing experience with the ability to triage and prioritize, both invaluable.

I had bilateral palpable scalene nodes, and the biopsy was obtained from the right, to avoid the thoracic inlet. The node bearing fat pad and only one underlying node made a sufficient specimen. My only post op complication was hiccups! Probably due to a previous thyroidectomy, the nerve distribution was slightly disrupted resulting in temporary irritation to the phrenic nerve. It resolved with the post op swelling. As you can probably tell, I've told this story a few times LOL. I worked with newly diagnosed patients for some time as a counselor at the request of my rheumy.

[Tinker]

Still in awe of all you do!  What used to take you hrs. takes days you say...well, I'm at weeks to completion.  If I push myself and do things anyway even if my body is telling me STOP. I surely pay for it for the next 3 days.  It seems most of the time I'm too tired to even read the computer and with a brace on my left wrist, typing can be slow.  Thanks for all your invaluable info but I'll have more questions after I see the pulmonologist.  Not sure, but I think she may want to wait and see how things go before meds.