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JBG

Lung nodules found on X-Ray and CT Scan

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I wanted to know if anyone else experienced lung nodules, as well as a PFT result that showed that there maybe a possible obstruction. I have no symptoms. I do have CREST/Systemic with severe Raynauds. The CREST was diagnosed in '98.

 

Please give me your thought.

 

Thanks,

JBG

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Hi JBG,

 

I have several lung nodules (along with granulomas, fibrosis, and thymic something and mediastinal cyst) and they have all resulted in nothing at all. They followed it all by CT scan for several years and then said I was free and clear (from the nodules, who ever knows for sure about fibrosis, but it is not active now.) If you look that stuff up online, all of it sounds horrific!

 

But what happens is that the technology is so great today that the imagining is able to pick up zillions of things that old x-rays never could and they are discovering more and more that many/most changes like these are very common and never lead to further disease of any sort.

 

However, they seem to have some sort of obligation to scare the living daylights out of those of us who have such results, and keep us on tenderhooks for at least several years before giving the all-clear and then happily assuring us that is the usual outcome (nothing at all). Personally, I think they should tell us right from the start that odds are great nothing will ever come of it and we'll sorely regret every minute we spent worrying about it! It frayed my nerves for a few years -- totally unnecessarily, and I'm still a bit peeved that my doctor didn't offer reassure in the beginning instead of only at the end. Of course, with scleroderma they are probably half-terrified of every one of our test results, too, and thinking we are the unlucky ones to flunk out on this stuff.

 

You can take comfort in my experience, I hope. That was over, what, maybe almost 10 years ago now that I got the all-clear on that round. <Knock on wood!> Just because it's probably nothing doesn't get you out of the follow-up though, since of course they are worried about the few percent where it really is something.

 

I don't know about obstruction. I think that is related to emphysema (not scleroderma, which is more often restrictive, I think, but my head could be on crooked tonight, who knows?). And the lungs can survive a ton of damage before drastic steps like oxygen are necessary. You can even live just fine on just one lung! So here's hoping you get to keep both and that, overall, they continue to function and that nothing life-threatening immediately serious becomes of it.

 

Keep us posted on what more you find out, okay? Meanwhile, all I can say is I really wish I hadn't wasted one moment worried about all the crud that turned out to be cruddy, but harmless, as last I checked, I still have a pulse and can breathe room air.

 

:yes:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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I also have a nodule in the lung, they scanned it every so often, for my sake really, but it hasn't changed in size or anything.

 

My PFT DLCO has also been declining, due to have another PFT next weeks after around 15 months of not having one.

 

Summer

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I've had lung nodules. They were either cysts or "pulmonary adenoma" - which is some sort of benign cyst.

 

I had bronchioscopies to remove the cysts. They go in with (the nose) a tube with a microscopic camera, find the cysts and burn them (cauterize)? On one occasion, a cyst was blocking part of the lung. This could result in infection.

 

The procedure is not as bad as it sounds. They either put you out completely, or give you so much anti-anxiety meds that you don't mind.

 

Craig

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Hi JBG,

 

I have fibrosis on my lungs but have never had any nodules, as far as I'm aware.

 

Like Craig, I had a bronchioscopy when my consultant was trying to determine the type and extent of my lung damage. Naively I hadn't realised that the tube goes up the nose into the lungs, not down the throat as I'd imagined, but as Craig has said, it's not as horrible as it sounds. During the actual procedure I wasn't put out completely but given a sedative and spent most of the time as high as a kite! ;) Afterwards I went through all the symptoms of a bad head cold (sore throat, streaming sinuses and sneezing) but it only lasted 24 hours.

 

As Shelley has said, hopefully the nodules will remain as they are and will never worsen.... I do hope so. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thanks so much for your responses. I'll get the official PFT results next week. In addition, my rheumatologist is arranging for me to see a pulmonologist.

 

I'll keep you posted.

 

Regards,

JBG

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