Scarring in lung

[maria garcia]

CT scan chest results :Normal CT scan of the chest except parenchymal scar in the left lower lobe. Im trying to understand, she has never had any involvement in the chest(lungs) 6 months ago X-ray was Completely normal no findings. now CT SCAN is showing scar. When she was diagnosed with vasculitis it was from scar tissue in her eyelid then a biopsy was performed. Can this also be wegeners in her lung? If you have ever had scar in the lung let me know. Anthing would help me. Her appointment is on Dec. with the Rheumy. I will also be making an appointment with the pulmonologist.

[jeriorleans]

My son's x-ray was clear also, however the CT scan showed nodules in his lungs which resulted in scarring. IT would never had been detected if I hadn't insisted on a CT scan because he had a cough for about 2 weeks.

[Al]

CT scan chest results :Normal CT scan of the chest except parenchymal scar in the left lower lobe. Im trying to understand, she has never had any involvement in the chest(lungs) 6 months ago X-ray was Completely normal no findings. now CT SCAN is showing scar. When she was diagnosed with vasculitis it was from scar tissue in her eyelid then a biopsy was performed. Can this also be wegeners in her lung? If you have ever had scar in the lung let me know. Anthing would help me. Her appointment is on Dec. with the Rheumy. I will also be making an appointment with the pulmonologist.

This is most likely from the vasculitis. It is a common occurrence with Wegener's. But the rheumy will give you the definitive interpretation. But there is apparently little involvement so far (the pulmo will most likely give a pulmonary function test to check this out). (My own lung scarring was much worse, but my PFTs are still at 95-plus percent of normal.) In all cases, your daughter's treatment was begun early enough that this involvement should advance slowly if at all.

Al

[maria garcia]

Did the nodules go away and how? Are the nodules from wegs? Thank for the infor.

[Al]

Did the nodules go away and how? Are the nodules from wegs? Thank for the infor.

In my case, Maria, I had no nodules--only a "ground glass" pattern on the scan. But a tissue sample from a bronchoscopy revealed fibrosis (scarring). Later scans are pretty clean.

Al

[Thakator]

Hi Maria,
Nodules in the lungs is one of the more clear indicators of Wegs. even though they can be caused by other things. They can develop quite quickly, are customarily the size of peppercorns but can get considerably larger (golfball sized in my case) and they can disappear on their own. My pulmonologist says they sometimes simply get assimilated by the lungs themselves. Also, with Wegs. it is not uncommon for a scan to show clear lungs and then to reveal nodules, bleeding and the ground glass granulomas just a few days later. Such is the nature of our beast and just one more reason why vigelence becomes such a part of our life post diagnosis. Ron

[maria garcia]

Al, I read in a site about another vasculities that produces ground glass pattern on lungs. How often can a CT scan be done? Thats another new concern. My husband says to wait a year. I said no way! I know that radiation is bad but how then do we keep our eyes on them. Ok so now its another organ who is started to be affected. I think Im def. going to have to find a weg specialist and change insurance. The rheumy didn't even suggest the ct scan it was me. I just need to keep checking for more involvement without over exposing her to radiation. How to do that? Im so sorry shes going to have to find out another organ has been affected and we need to keep are eyes on. Poor girl!

[maria garcia]

Hi Maria,
Nodules in the lungs is one of the more clear indicators of Wegs. even though they can be caused by other things. They can develop quite quickly, are customarily the size of peppercorns but can get considerably larger (golfball sized in my case) and they can disappear on their own. My pulmonologist says they sometimes simply get assimilated by the lungs themselves. Also, with Wegs. it is not uncommon for a scan to show clear lungs and then to reveal nodules, bleeding and the ground glass granulomas just a few days later. Such is the nature of our beast and just one more reason why vigelence becomes such a part of our life post diagnosis. Ron
How often can we do CT scans so we can be vigelence of our lung and the damage? Im afraid of too much radiation.

[Thakator]

Having personally had over 20 chest x-rays in the past seventeen months and eight to ten chest ct scans in the past twelve months, I have questioned both my rheumie and pulmonologist about just how much of this stuff we can stand. They've consistently said that even with these numbers I am within the range of safety - - they've also said that the risks of higher exposure to the scans is outweighed by the risk of what the Wegs. can do if one waits too long to take a good look. It's also not uncommon for the lungs to look clear on an x-ray but to show nodules on the ct scan. The scan is much better.

[Al]

How often can we do CT scans so we can be vigelence of our lung and the damage? Im afraid of too much radiation.

I'd say, as much as necessary, but no more! I know this is nebulous, but this is the best we can do. As Ron says, do it when then benefit outweighs the risks. But talk to the pulmo, and voice your concerns about excess radiation. A good doctor will not over-order scans. The contrast (with iodine) might not be needed for every scan, so that would cut down on the risk. The bigger risk, though, is to not know anything.

Al

[Lightwarrior]

[QUOTE=Al;50695]In my case, Maria, I had no nodules--only a "ground glass" pattern on the scan. But a tissue sample from a bronchoscopy revealed fibrosis (scarring). Later scans are pretty clean.

I had ground glass and nodules which went away once the cytoxan and prednisone were started.

[Sangye]

Maria, don't go too far down the road of thinking "now your daughter has yet another organ involved." Scarring can happen from any number of things and it doesn't necessarily indicate active lung involvement even if it's from Wegs. Do not rush into another CT scan. One chest CT scan is an enormous amount of radiation, more if they use contrast dye. Especially since your daughter is young, you have to be extremely conservative with her exposure.

In the past 5.5 years I've had over 50 chest x-rays and over 25 CTs (mostly to chest, and at least 1/3 with contrast). Most of that occurred in the first 2 years. It's a major risk for cancer. My docs don't order CTs or x-rays on me unless we absolutely have to.

[delorisdoe]

My docs don't order CTs or x-rays on me unless we absolutely have to.

same for me

[NicShaf]

Maria,
I had nodules in my lungs when I was diagnosed, they did a CT in the hospital, and another one 6 months later that showed minimal scar tissue where the largest nodule was. My pulmonologist doesn't see any reason for another CT since it is healed. I've had a couple chest x-rays done when I've gotten a cold to check my lungs, but those are only a fraction of the radiation a CT has. As long as your daughter is monitoring her symptoms and is being treated, I don't think the scar tissue would be a problem. What did the doc say?

I think the way I would look at this is that if it is scar tissue, it is healed now, and that is a good thing. Maybe there was some slight involvement in the begining that her x-rays didn't show?