ground glass opacity and nodules

In 2010 they thought I had mac disease, but the tests were all negative. I do have myasthenia gravis a neruomusclar disease. I also had kidney cancer last year.

At the end of April my shortness of breath took a nose dive and no matter what I do I am short of breath.

I had a chest xray done and it showed fluid on the lungs. My lung doctor had me do a ct scan and it shows again ground glass opacity and lung nodules which I new I had as they were watching them.

I go on the 26th for a bronschopy again. I am assuming she will do biopsys and if that is not the plan I am going to ask her to do so since kidney cancer does spread to the lungs.

Has anyone else had the ground glass opacities?

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I have a 5mm, stable ground glass nodule which I am going to ask my doctor about next week. I was at National Jewish Hospital in Denver in December for a week of testing and am going back next week for a follow up and tests. I will post anything I learn about it when I return. Toni

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thanks Toni, I hope your test and results go good.
I will let you know how the bronscopy goes.
Annette

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Hi Tonis I am thinking of going to National Jewish for a second opinion please let me know how it goes with your appt. Do you recomment any certain Dr.s there?? Sending good thoughts and prayers your way. :)) Beth

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saw a copy of my ct scan and it shows 6 new nodules, will have to pull out the past ones but I am thinking this may make 9 or 10 in my right lung. I will be glad when Tuesday gets here.

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I am just back from National Jewish Hospital and learned more about my stable ground glass nodule. It turns out that it is an anomaly that could turn into an infection or cancer. As long as it is stable, they do nothing and just watch it. As was the case when I was there in December, I learned so much. I would recommend it to anyone who needs a really compressive evaluation or second opinion. Hope everyone is well. Toni

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Beth
My doctor is Gwen Huitt and I think she is terrific. Toni

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Toni,

that is great news... my ground glass is 2.5cm then all the nodules. since I had kidney cancer last year I am concerned about cancer since it can spread to the lungs. I have been very short of breath and my legs swell very bad.

I feel the doctor will do biopsys on Tuesday. I will report back after the test.

Annette

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Hi Kiki,
I had ground glass opacities and "tree in budd" patterns along with many nodules in lung fields on both sides along with in mediastinum (area between lungs) when diagnosed with MAC. The ground glass opacities are seen with MAC. Did they do all the necessary testing like several sputum tests when they thought you had MAC?? Also, what did they say the fluid on lungs was from. Hope you get some answers soon and keep us posted.
Best of luck, Linda

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Hey Linda,

yes my lung doctor in 2010 did a wash and other things and sent off took 6-8 weeks to grow and came back normal. I had back then another ct scan in 3 months and there were no ground glass but nodules. The doctor feels it might have been from aspiration since I also have Myasthenia Gravis which part of the things it causes me is choking issues.
I have had 3 cts since then to monitor the nodules. Since I had the fluid and sever shortness of breath I went back to see her and that is when I had the most recent ct without contrast and it showed the ground glass opacity and 6 new nodules. I go for a bronschopy on Tuesday and will be glad to get past it.
The lung doctor and my cardio doctor are concerned about the fluid and I also have bad swelling in my legs.

What are they treating you with for the mac? I know when they first thought it was that I found that high doses of anitbotics was given for it.

Let me know how you are doing. my email adress is txkiki53@gmail.com

Annette

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In 2000 my CT scan showed the ground glass and nodules in both upper lobes. I have always tested positive when they did a TB skin test. I had 2 bronchs where they took sputum, and many sputum tests over the years that were all negative. In 2011 I was hospitalized with what they thought was pneumonia, over a month later I found out that it was a mycobacterium infection. My Dr thinks I may have had it all along because it can be hiding in the damaged lung tissue. If you don't get a sample from the infected area you will get a negative result. It just so happens that I had so much of it in 2011 that my numbers were off the charts. Your Dr should be able to get a good sample, I pray you dont have MAC, the antibiotics are dreadful.
Good Luck!

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Lady S,
Thank you for sharing, I hope you are doing better.

yes, that is what I remember that the antibotics were awful.. Which I pray is not mac, as due to the myasthenia gravis, there are so many antibotics I can not take due to them making my disease worse. A double edge sword...

I also fear it might be cancer, since kidney cancer can spread to the lungs.

I will let you all know what they find.
Annette

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Hi Beth,
If hyou go to the National jewish Hospital up in Denver, Co, let me know what they say.
Mare9Toro)

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Beth
I have just returned from National Jewish and continue to be incredibly impressed. My doc is Gwen Huitt and I think she is terrific. I would recommend the hospital and Dr. Huitt unreservedly. Asked her a lot of questions which I didn't ask when I saw her in December and she was very patient and thorough. Am still stable so no meds. Have been doing my Acapellamtherapy faithfully and everything else they recommended and it seems to be paying off. Hope all is well with you. Toni

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I had the bronschopy yesterday and the culture was sent off and should be back in 6 weeks. The biopsys should be back
by Friday. I had a very hard time breathing and coughing issues after the procedure, it also made my myasthenia gravis act up so
I was admitted over night. I am better but still very short of breath and cough if I do anything.

I will post the findings when I get them.
Annette

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YES, my Dr. says I have the ground glass sound in my lungs. Actually, I've had 3 dr.s tell me that. At first she thought I might have had pnumonia, but after other pulminary Dr.s said its P.F., she sort of sat up & took notice. I'm on all kinds of medicines, and now I'm diagnosed with ATRIL-FIB. What ever that is? But, I'm still hoping for a miricle. I've been taking a few herbal substances, but do not know if they are doing any good. I'll just keep hoping. I'm 71 yrs. old , but with this heart problem, I doubt if I would ever be a candidate for a transplant. I don't think they would trrow good after bad.
I guess I'll just take day by day and try to be as constructive for my family as I can. Hiram

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Thaks for sharing and will wait to her about your recent tests.
Where do yu live.
I am in Las Vegas. I was in Schererville, In for 10 years and 50yr in Chicago, born and raised there.
Toro

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Kiki53,
How did they find your diease? Do you have MAC also? Whre do you live? How long have you had your diease?
What are they doing for it? I cough , cough, cough all the time and and something always comes up with the cough.
Curious
Mare(toor)

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At the end of April, I started getting very short of breath, low grade fevers, night sweats, and bad swelling of my legs. I went back to my lung doctor, so she had me do the ct scan. I had started some periodic coughing but only a could of times coughed up junk.

The cultures won't be back for 6 weeks. The biopsies were to be back on Friday, and when they were not she called the pathologist and said they it did show cluster small cell inflamtion, she is doing further testing this weekend to determine what it is . So I have something, just don't know what. every thing I find about cluster small cell is cancer. Since I had kidney cancer last year and it can spread to the lungs, it could be a possiblity. Hopefully not, but if it is I am one to take the bull by the horns and run..

I live in Texas.
best of luck to all
Annette

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Hi Annette,
Stay positive, it sounds like you do and that is part 9of the battle no matter what it is.
I will pray that your test comes bak negative.
Mare(toro)

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About a year ago, I visited a friend in Delaware. Sightseeing with him was a task. I kept getting out of breath. Well, I did not take it to serioualy. In this past Jan., I had a knee replaced and they found I.P.F. I have been running to Dr.'s ever since. Its funny that all my "G.P."s say my lungs sound OK. Only one, in the begunning said I had the ground glass effect, and thought it was pnumonia. I then wen't to a pulminary in Corning, and he Diag. I.P.F.
I have seen the x-rays, but no new ones. The Dr.s I see now said my lungs sound clear. I don't know thats a way to keep me happy, or has this condition gone away. ME, I think its has to do with all the suppliments I take. Some well known, some from some "Fish-oil salesman" and these are the ones that seem to make me sit up and take notice. I guess there is no harm chasing some guy selling a product that might help me. Well, time will tell.

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