Radiology versus Clinical

Fact: Bronchiectasis is a progressive disease.
A second opinion is always a good idea if you have doubts about the first one.

Thanks - that is my instinct. The doctor was confident in his assessment so it is tempting to take the good news and move on. I just don’t want to give something that may be in the beginning stages to progress. I wish I had asked the doctor if his disagreement with the radiologists was about the actual presence of dilation or whether he thought it was too minor to be significant.

Agree: second opinion. I had mild bronchiectasis show up 13 years ago & was first told by my otherwise good PCP it was "idiopathic" and didn't need to be followed once the nodules were confirmed to be stable over several CT scans 6 mos apart (which they were). I did get seen for a while by a nice but unconcerned pulmonologist and it wasn't until I eventually ended up at a specialized bronchiectasis & Mac center that I got respiratory therapy & training in airway clearance and was finally able to bring up enough sputum to determine that I have MAC. Might I have had it already for a long time, and it was lurking without causing issues? Maybe, but I'd rather know and be able to understand and choose options vs find out later I might have been able to prevent or slow down permanent damage and serious illness.

Thanks for the reply. I did have nodules show up on previous CT scans that were stable but did not appear on this scan. So again maybe part of a slow moving process. Glad you eventually got to a specialized center. I would definitely rather be proactive than reactive. Thanks for sharing your experience.

You don't mention your age, history of pneumonia or smoking, or other lung conditions, but here is something I have noticed, especially in the era of many CT scans, is incidental finding of asymptomatic bronchiectasis. I personally would be reassured by the expert and only consider a follow-up CT in 2 years unless I started having frequent lung infections.

Thanks for your input. Helpful to know incidental findings are a thing. I am 60, non-smoker, no pneumonias - one previous protracted respiratory infection lasting four months with a few rounds of antibiotics but that was over thirty years ago. No other lung conditions but a history of chronic nasal congestion. I also have an inherited intestinal malrotation. And because I had whole genome sequencing done - I found out I have three single variant mutations for Primary Ciliary Dyskensia but the diagnosis usually requires two copies of the same variant as well as a history of infections. The doctor did say given the malrotation and the genes it is possible I could have a mild phenotype for PCD which could somewhat affect the cilia in the lungs. If I don’t get a second opinion, I do think your suggestion of a follow up CT in two years would be the way to go. Thanks.

I always go with my gut feelings. If you think the Dr was gaslighting you or just not giving you what you needed, I suggest another opinion. I've experienced this kind attitude more than once and I always go with my gut feelings. You have more wisdom than you know inside you - use it.

Thanks for your reply. I really don’t think he was trying to gaslight me. I just think he felt whatever he saw on the scan combined with my clinical picture, in his judgement, was minor or mild enough to not warrant any further attention which I understand given the fact that he sees patients with severe issues. I just think he didn’t explain the discrepancy between having an experienced radiologist grade the issue as moderate and diffuse bronchiectasis while he basically said he saw nothing of concern. If the second radiology report had said the issue was mild or limited I probably wouldn’t consider a second opinion. The difference in interpretation is what is still confusing for me. Maybe I am giving too much weight to the radiologist. Either way, I won’t just ignore it. I’ll either get second opinion or a 2 year follow up scan. Thanks.

@annalaine I can’t speak to your CT’s and the level of damage that they may demonstrate but if you have Bronchiectasis (BE), and it sounds like you do, if it were me, I would want a full work up as to why I have BE, which would include sputum testing. The fact that you didn’t have that done, to me, suggests the pulmonologist you saw is not in fact a BE specialist. Myself, I feel fine. My PFT’s are normal. I was diagnosed with BE when a chest X-ray I had done in the ER showed infiltrates but I was asymptomatic. The ER doctor insisted we do a CT. At that time I would have told you there was nothing wrong with my lungs, I was even hesitant to get the chest xray as it seemed unnecessary. Obviously the CT said otherwise. My local doctor did an initial work up which came back positive for MAC/MAI. My CTs show more advanced disease and I was recently told at National Jewish Health, one of the top hospitals treating NTM, that my lack of symptoms and normal PFT’s are not relevant in the decision to treat in my case, given the advanced damage on CT. Again, let me stress: I feel fine. I will also add that I have had four CTs in the last year and every single doctor that has commented on what my CTs “show” has described something different (radiologists, pulmonologists, infectious disease). Every. Single. Doctor. Often failing to report significant findings. Hopefully your BE is mild with little to no other damage. But don’t trust marketing. My first “second opinion” was with a local doctor that claimed to specialize in BE. He clearly did not. I eventually took myself to NJH. As others have noted, BE is progressive and the fact that you are asymptomatic now, does not mean you will be asymptomatic in the future. Moreover, without sputum testing, you don’t know if you actually have an active infection or not that may be driving the BE. Do you know how many lobes the BE is in? One report says “diffuse” which to me, a non-doctor, suggests it is not focal and possibly in multiple lobes. That said, traction BE is a little different than traditional BE and as I understand it traction BE is associated with interstitial lung disease. After an initial full work for the BE, at a minimum, again, if it were me, I would want semi-annual to annual sputum screening just to make sure that my lungs stay clear of infection. I have obviously had my NTM for years. I had no idea I had any infection. I had no idea I had BE. In my case, it is a true chicken egg scenario as to whether I had BE first, or my BE was caused by my NTM. Regardless, NTM is a bummer diagnosis, and if I had known I had BE before I had NTM, I would have done everything in my power to avoid an NTM infection, including regular AC. I have a friend who was diagnosed with
Pseudomonas at the same time she was diagnosed with BE. I am certain she feels the same. Learning you have BE before you have symptoms can be an opportunity. The fact that none of this was discussed with you, to me, suggests the pulmonologist you saw is not a BE specialist. From your post, your gut is telling you something is off. Trust that instinct. There are a lot of great BE resources posted in this group. Spend sometime educating yourself, you will see what I am discussing above are standard protocols for BE. If these aren’t being discussed with you, at a minimum ask why. Preferably, get yourself to true BE specialist. If you let the group know your general geographic area, we may be able to suggest practitioners near you. Lastly, it is worth noting that it is not uncommon for asymptomatic people to find out they have BE/NTM from the calcium score test CT.

Thank you for sharing your experience. Traction BE was the initial read but the second more specific read was diffuse cylindrical BE. I am in the DC area. There is a clinic at UVA for BE and also PCD. I did read a study that was done with NJH that showed some of their patients with BE were heterozygous for PCD or alpha 1 anti trypsin. I am heterozygous for both. I definitely think I have some risk factors at the very least. So I think I am off to UVA. Thanks again.