This can be a scary time, waiting for your consult. And then at that time you still may not have solid answers. I don't have any answers for you but thought I'd share a few things and you can decide if it spurs some questions for you. have some lung issues but more so, my husband has been dealing with several things. He just saw his pulmonologist today. He had a 3 mm mas that has changed in the last 6 months. That was picked up by an abdominal ct scan while they were looking for something else. He is getting another ct scan to look at it again more specifically. To compare lung ct scan to lung ct scan. He's had quite a bit of breathing issues and he is not expelling his breath enough, in effect it is staying in his body and becoming toxic. He is pretty physically fit and because of that is numbers appear normal but really are not normal because his physical capacity is at a different level than most so his breathings tests actually were not reflecting his true condition. So we wait.

I will say a prayer your find some answers and they are good answers for positive health for you. - zen

I have extensive lung damage, and a few lung conditions that complicate my CVID. I get tons of nodules. They come and go. There is potential for GLILD to be added to my list if lung conditions as lymphocytic nodules, or granulomas are a known complication of CVID and have a specific presentation in the lungs. That is in the more serious side. Having said that, I get nodules in my lungs that come and go with infection. This can happen with anybody that experiences a pulmonary infection. It can also be a benign finding. You could find a random nodule or two in the lungs of somebody healthy. It could be something, and could be nothing. If they only found one small nodule I would assume that they will just do a repeat scan in about 6 months to see if it has changed or disappeared. I know it is stressful to hear things like that, and be given worse case scenario, but one nodule isn't typically a major concern. Best of luck and keep us updated on what you hear.

Excuse that post. No way to remove it. I'm distracting myself while I can't sleep and misread. Your talking about a larger mass and not a nodule. Haven't experienced that, but still wish you the best.

Hi there,

So did you have a baseline ct done at diagnosis of cvid? With diagnosis, its super normal to request one as a baseline, checking for bronchectasis, nodules, etc. Very common in us. Anyways, they found a nodule on me at diagnosis and we watched and waited. I got a ct every 6 months and it did not grow or go away, that was good. Then one ct the pulmo freaked out saying I had them everywhere and I also asked if it was lung cancer and he said "if it was lung cancer, its so bad, you would be dead already" lol I felt better believe it or not. So we started with a fine needle biopsy to check the biggest nodule and I got the GLILD diagnosis (thats the short story). So for the last several years all of my nodules have come and gone, meaning old ones go away and new ones grow. LAST time however, my old ones did not go away and I still grew new ones, but the old ones got bigger. Have one or 2 over 1 cm now. From my own personal experience they will do one of 2 things - some sort of biopsy (fine needle is a piece of cake) or wait and watch it to see if it grows. Ask your doc: is it scar tissue? We get granulomas/scar tissue from ALL of our infections. Will they biopsy (I actually wish I would have opted for open lung biopsy because my current doc won't treat me without one so I'll have to end up getting one eventually), are they going to to a PFT as well? Ask if it can be GLILD - granulomatous lymphocytic interstitial lung disease or LIP or heck since you've been sick it could be BOOP (bronchiolitis ...shoot can't remember but its treatable, comes from infections)...anyways, better to get to the bottom of it. With lungs tho be prepared, it seems like NOTHING happens fast. It can be very stressful, deep breaths k?

Keep us posted. This could be simply related to respiratory infections. I've known of a couple similar situations and they both came back negative for cancer.



Dennis

Hi Count, As Zen and others stated it can be scary and freak you out..Last Aug they found a mass in my lungs, while in the hospital with pneumonia. I get a ct scan every 6 months. It has been stable since March. My doctor says since it's not growing anymore, not to worry about it..Guess they can tell by the scans and blood work if it's cancer.

Will keep you & Zens hubby in my prayers..

Hugs
Cheryl

Thank you all for the great info. Kelli, at diagnosis I got a chest X-ray but not a ct. I had thought that I should add a pulmonologist to my growing list of 'ologists' but I assumed a clean chest X-Ray was good.

I am a little concerned because I have been complaining of back pain for over a year but had chalked that up to a crohns flare and increased inflammation. After my pop did a chest X-ray in May she thinks pain is muscular and suggested PT ( I start next week). But I got sick again three weeks later and another urgent care location did a chest X-ray and they sent me a letter to follow up with PCP due to abnormal X-ray. I don't understand how I could have a good X-ray and then a few weeks later one showing a calcified mass. I thought it took time to calcify. Anyway I will ask that too.

Appreciate all the info. Going to arm myself with some great questions. Thanks for the well wishes.

None of my granullomas show up in X-ray - it's just not sensitive enough to pick them up. Should always be a ct at diagnosis. I would think it was there during X-ray and it just didn't detect it, I doubt it's just some rapidly growing mass. I'm not a doc but this is my personal experience with them.

So many opportunities to face fear and gain courage in this journey. I hope bravery comes up and over takes you. We all need a good measure of it.

Update. Pulmonologist thinks the mass is likely from a fungal infection and waiting for blood and urine tests to prove that. If not then will need biopsy and pet scan. It turns out to be a good sign that the mass was fast growing. That indicates infection and not a mass/malignancy.

If this is fungal it likely means that I will have to stop my remicade treatments for my crohns because it suppressed my immune system too much and my body couldn't fight off the fungal infection.

Just wanted to share that with my crohns buddies.

Waiting for answers but optimistic. Thanks for the well wishes.

http://www.pdr.net/labels/AMSAlerts/Files/1000040-614827_EducationGuide_Ltr_v1_E_ver.pdf

Link to info about fungal infections and remicade.