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40 yo, Alpha-1 Antitrypsin Deficiency (ZZ), innumerable lung nodules

Posted by bailey81 @bailey81, Jul 5, 2022

Husband w/AATD type ZZ, severe emphysema. (Dx w/AATD April 1, 2021.)
Former smoker (quit 7+ years ago)
Weekly plasma infusions. Uses trelegy daily, along with Proair rescue inhaler, and albuterol nebulizer as needed daily.
Last year CT findings showed a few lung nodules, some were on the larger side and spiculated. Had PET done after that CT. Dr said after reading the report, to repeat tests in one year, but at that time the thought was that the nodules were caused from former infections, scarring, inflammation etc. but did not appear to be cancerous... paraphrasing of course!
This years CT scan (done june 17th 2022) showed "innumerable" new small nodules, in both lungs, that were not present 2021 AND a couple new larger spiculated nodules. R lung- 12mm spiculated, L lung- 10mm spiculated.
Dr ordered another PET, done about a week later, these are the results:

Focal low metabolic uptake (maximum SUV 1.7), corresponding to a left
apical spiculated nodule, measuring up to 0.9 cm, seen on previous chest
CT from June 17, 2022, however new from PET scan study from May 11, 2021.
This compares with blood pool 1.7. Right lower lobe nodule
The PET study maximum SUV 0.9. Note that this of the former nodule are
metabolically active on the uncorrected data.

Subcentimeter new bilateral lung nodules seen on recent CT chest study
from June 2022, are below PET threshold and are not very hypermetabolic.

Partially visualized focal metabolic uptake at the cutaneous region
lateral to the left masticator zone, likely sebaceous cyst.

Remainder of radiotracer uptake is physiologic.

ADDITIONAL CT FINDINGS:

As above no interval pneumonia.
No pathologic adenopathy by size criteria
Focal bone island right femur intertrochanteric region, unchanged. Left
ischial focal bone island, unchanged.

IMPRESSION:

1. Morphologic progression of low-level metabolically active nodules
likely low-grade bilateral primary nodules rather than metastatic
disease.

2. Additional very small nodules are difficult to assess as they're below
PET threshold.

END.

We're waiting on next steps but Dr had said that he recommends biopsy even before latest PET results came back. We called his Dr to get some insight and he is now out of office for the next week! This is just so stressful, almost too stressful to tolerate and now it seems like we'll have to worry and wait another week?! I could just throw up and he's terrified.
Seeing the words "innumerable new small nodules" when compared to last years scan, nearly made us fall over.
Any advice? Any others here experience anything similar?

Interested in more discussions like this? Go to the COPD: Chronic obstructive pulmonary disease Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 6, 2022

@bailey81, deep breath. Getting test results before your appointment with the doctor can be so stressful. It is near impossible to calm the worry. Phrases like "innumerable new small nodules" are scary. I'm sorry that you have to wait a week.

As you know, lung nodules are quite common and small nodules are less likely to be cancerous (https://www.mayoclinic.org/diseases-conditions/lung-cancer/expert-answers/lung-nodules/faq-20058445)

Your doctor has likely ordered a biopsy even before the PET scan because there have been changes. I'm glad that he is being proactive and monitoring your husband closely. I'm not a doctor or qualified to interpret a PET scan, but there are indications that are hopeful. The nodules are very small and "not very hypermetabolically active".

Does your husband have a lung condition since he uses the Trelegy, an inhaler and nebulizer?

REPLY
bailey81 | @bailey81 | Jul 7, 2022

Hi Colleen.

He was diagnosed around age 30 with COPD. (He's 40 now)
Then Emphysema was mentioned shortly after.
He did the best he could for about 9 years with that diagnosis and the inhalers and nebulizer treatments, he wasn't smoking, still doesn't. He definitely struggled more and more as the years went by with shortness of breath, and he seemed to get respiratory infections more, and seemingly very easily. I nudged him a bit to look for a new dr. It just seemed like something was "missing." The deterioration didn't make sense. He was relatively young. He quit smoking at 28. Yet he would be out of breath after walking up stairs to get to the bathroom at home. We have family members in their late 60s who still smoke, have emphysema and dont experience shortness of breath like he does. I know everyone is different, but something just seemed off..
It was only when he finally got a new pulmonologist did he immediately get tested for Alpha-1 Antitrypsin Deficiency, and that's what he has. He's type ZZ, and we learned that his liver produced almost NONE of the protein that it normally would to help protect his lungs.(He now does weekly Prolastin-C infusions.) For his entire life he's had no idea that he has this genetic deficiency, and therefore didn't know he had even more than the obvious reasons to make different lifestyle choices- like with smoking and other environmental/work place hazards.
Anyway, that's the same pulmonologist he has now. He is very proactive and calls to speak to my husband over the phone himself if my husband has questions. I know that probably seems small, but for us it's been huge. It makes things feel more personal.
We just got the call to scheduled his biopsy yesterday, so he'll have that done in about a week.
It's been hard going on about our days with knots in our stomachs. As much as I'm worried, it can't compare to what he's feeling.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 8, 2022
In reply to @bailey81 "Hi Colleen. He was diagnosed around age 30 with COPD. (He's 40 now) Then Emphysema was..." + (show)
@bailey81

Hi Colleen.

He was diagnosed around age 30 with COPD. (He's 40 now)
Then Emphysema was mentioned shortly after.
He did the best he could for about 9 years with that diagnosis and the inhalers and nebulizer treatments, he wasn't smoking, still doesn't. He definitely struggled more and more as the years went by with shortness of breath, and he seemed to get respiratory infections more, and seemingly very easily. I nudged him a bit to look for a new dr. It just seemed like something was "missing." The deterioration didn't make sense. He was relatively young. He quit smoking at 28. Yet he would be out of breath after walking up stairs to get to the bathroom at home. We have family members in their late 60s who still smoke, have emphysema and dont experience shortness of breath like he does. I know everyone is different, but something just seemed off..
It was only when he finally got a new pulmonologist did he immediately get tested for Alpha-1 Antitrypsin Deficiency, and that's what he has. He's type ZZ, and we learned that his liver produced almost NONE of the protein that it normally would to help protect his lungs.(He now does weekly Prolastin-C infusions.) For his entire life he's had no idea that he has this genetic deficiency, and therefore didn't know he had even more than the obvious reasons to make different lifestyle choices- like with smoking and other environmental/work place hazards.
Anyway, that's the same pulmonologist he has now. He is very proactive and calls to speak to my husband over the phone himself if my husband has questions. I know that probably seems small, but for us it's been huge. It makes things feel more personal.
We just got the call to scheduled his biopsy yesterday, so he'll have that done in about a week.
It's been hard going on about our days with knots in our stomachs. As much as I'm worried, it can't compare to what he's feeling.

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Bailey, that is just too young, isn't it. I'm hoping fellow members like @discerning1 @nancyjac @sakota @windwalker @marty1996 @lindayoungquist will join you in this discussion.

In the meantime, you may also be interested in the related discussions:
– COPD: Is it genetic? alpha-1 antitrypsin deficiency https://connect.mayoclinic.org/discussion/copd-is-it-genetic/
- Alpha-1 Antitrypsin Deficiency - just been diagnosed https://connect.mayoclinic.org/discussion/alpha-1-antitrypsin-deficiency-just-been-diagnosed/
– Alpha-1 Antitrypsin Deficiency: Is it considered autoimmune? https://connect.mayoclinic.org/discussion/alpha-1/

I love how proactive and involved your pulmonologist is in your husband's care. This must be a great assurance. I hope you can focus on something that brings you pleasure and peace this weekend. What helps you refocus the racing thoughts?

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