Cavity and headed to Big 3

@jgb1997 I was in a very similar position to you. There is SO MUCH I could say on this topic, but short version is I decided to treat. I can honestly say I have no idea if that was the right choice long term (I am in month 7, and it has been BUMPY). But in my case “stable” wasn’t in fact “stable” but progressive cavitary disease. I had being doing 7% saline for 8 months before my visit to NJH, and that did not have any discernible impact. In fact, at NJH, where they give actual counts for the AFB, I was above 400 for MAI, their highest measure, on all three sputum, and one AFB was smear positive (for the first time). In other words, my MAI infection was significant and progressing and saline/airway clearance was not enough to stop it. My sense is all doctors recommend treatment with cavitary disease because it is associated with advanced infections which are not likely to respond to lesser measures (like saline/airway clearance). And with progression comes more and more damage. I don’t know if you are seeing an NTM expert, but going to NJH helped me to get accurate information which led me to my decision. If I were you, I would want a true NTM expert to opine if 1) I truly have cavitary disease (CTs are much trickier to read accurately than patients realize); 2) what are my MAC and Abscessus bacterial counts (how do they know the MAC is causing the cavity and not the Abscessus or something else?); 3) rule out any other (easier to treat) causes for cavitary disease - you could have MAC and … aspergillus, for instance). Of course, getting in to a NTM expert can often take up to 6 months and further progression is always a risk. Hopefully one of your three pulmonologist is a true NTM expert and the above analysis has already been done. Again, I have SO MUCH I could say on my own decision to treat, if you would like to have a phone call to discuss in depth feel free to private message me.

I have Bronchiectasis and was diagnosed with a lung cavity 1.2 x 0.7 cm two years ago. The following year it got a little smaller. Not sure but I think I have two. The second year it’s 1.4 x 0. 9 cm. Not sure what the wall thickness is but the doctor said it wasn’t thick. He’s having me wait six months to see any changes. If there is he wants to do a bronchoscopy and a biopsy . I’ve been worried and I have two months to go.

I have Bronchiectasis and was diagnosed with a lung cavity 1.2 x 0.7 cm two years ago. The following year it got a little smaller. Not sure but I think I have two. The second year it’s 1.4 x 0. 9 cm. Not sure what the wall thickness is but the doctor said it wasn’t thick. He’s having me wait six months to see any changes. If there is he wants to do a bronchoscopy and a biopsy . I’ve been worried and I have two months to go.

@jgb1997 I was in a very similar position to you. There is SO MUCH I could say on this topic, but short version is I decided to treat. I can honestly say I have no idea if that was the right choice long term (I am in month 7, and it has been BUMPY). But in my case “stable” wasn’t in fact “stable” but progressive cavitary disease. I had being doing 7% saline for 8 months before my visit to NJH, and that did not have any discernible impact. In fact, at NJH, where they give actual counts for the AFB, I was above 400 for MAI, their highest measure, on all three sputum, and one AFB was smear positive (for the first time). In other words, my MAI infection was significant and progressing and saline/airway clearance was not enough to stop it. My sense is all doctors recommend treatment with cavitary disease because it is associated with advanced infections which are not likely to respond to lesser measures (like saline/airway clearance). And with progression comes more and more damage. I don’t know if you are seeing an NTM expert, but going to NJH helped me to get accurate information which led me to my decision. If I were you, I would want a true NTM expert to opine if 1) I truly have cavitary disease (CTs are much trickier to read accurately than patients realize); 2) what are my MAC and Abscessus bacterial counts (how do they know the MAC is causing the cavity and not the Abscessus or something else?); 3) rule out any other (easier to treat) causes for cavitary disease - you could have MAC and … aspergillus, for instance). Of course, getting in to a NTM expert can often take up to 6 months and further progression is always a risk. Hopefully one of your three pulmonologist is a true NTM expert and the above analysis has already been done. Again, I have SO MUCH I could say on my own decision to treat, if you would like to have a phone call to discuss in depth feel free to private message me.

Cavitation usually means you waited too long to start treatment. If scar tissue forms in or around the cavity, it will probably be permanent (like mine). Don't be surprised of they add amikacin or arikayce in the future if not resolved.

@maxraether Does the doctor have you doing any airway clearance to keep your lungs as one as possible. If you have a cough, have they had you produce a sputum sample too test for infection?

@maxraether
Thank you for your post. I do hope your next scan is better news. Interesting that your bronchiectasis caused your cavity. You don’t have MAC?