Mucinous adenocarcinoma of lung Stage 1

Hi @pb50, you have been through a major surgery, I hope you start to feel better soon, but it can certainly take some time to heal when so many nerves are involved.
You may want to check out this discussion on lung surgery, if you haven’t already seen it. Some of this can be scary to read, so try to keep it in perspective, but there others that feel similar to you.
https://connect.mayoclinic.org/discussion/had-lobectomy-in-2020-still-having-radiating-severe-nerve-pain/
Has your new pulmonologist weighed in on your questions? Sorry that I don’t have an answer, but I’d be interested to hear what they say about the air travel.

* Is this pain typical this long after surgery? Yes, I had my upper right and middle right lobes removed in 2000 because of 10-12 cm mucinous adenocarcinoma (what we used to call bronchial alveolar carcinoma in 2000). It took about a year before I could wear my bra. I still have pain 23 years later especially when the weather changes which I have learned to block out. Like you, I can't take pain meds.

* should I have full lung capacity back? I never got my full capacity back. I was an active 46 year old when they took out my tumor in 2000. Ever since then I've had shortness of breath going up the slightest incline. Speak to your family doctor and see if they can do a pulmonary function test to check your lung capacity.

* Are there guidelines somewhere about flying cross country in pressurized cabin? Sorry, don't know.

* is there something else I should be doing? Walking really helps. Healthy weight helps. I tried very hard to regain my lung function the first 10 years by walking and taking 3-6 hours of yoga classes per week. But eventually I just gave up and accepted I will never get my lung function back.

I am so sorry this happened to you. Did you do a PET before surgery? I am curious what the SUV was on your spot before they took it out.

Dear PB50 - I know your feeling...
1) I had VAT surgery (wedge resection) on 5/19. In the beginning I had a lot of pain and took Gabapentin which helped. I am now off of it. I have occasional needle pricks, and I am still sore with a violent sneeze, and my chest feels stiff when I take a deep breath. Also I have very numb feeling under breast and to side - my Mayo surgeon told me it can take up to a year for nerve pain to go away.
2) This was my second VAT surgery and my breathing was not quite the same after the first. I could do lots of walking on flat ground without much issue, but I get short of breath if I am moving and bending. This is now a bit more pronounced. I don't really think it will go back to "normal". Can be heart as well as lungs when it comes to shortness of breath.
I have several oximeters and check my oxygen levels. At rest I am very good but with exertion my oxygen level goes down even below 88
3)I took an international trip before second VAT - no problem. I did check with my Pulmonologist before and did an oxygen titration test on a treadmill. I needed temporary night oxygen after both surgeries, and then went off of it at 3 months. I did overnight oximeter test to be sure.
4) What else to do? WALK and take good care of yourself

Thank you so much!! I do walk. And I have few problems with walking a continuous 1/4 - 1/3 mile. Beyond that I do need to stop and catch my breath. My heart rate gets up to 120-130 just changing a fitted sheet but my O2 gets higher as my heart rate increases. Must be due to hyperventilating I guess.

My nerve pain - largely across my breast and upper abdomen on the side of the incision - is still a bit present - more now as numbness than sharp pain, though occasionally I will get that electrical type pain.

I’d hate to think I’ve gotten about all the recovery in lung capacity I’m going to get, so I will stay after it.

Again, many thanks.

Thanks!!! I was lucky in that my module was about a tenth the size of yours (15mm or 1.5cm) and located right on the edge of the lower left rib cage. Like I said, I try to find gratitude.

I had CT every year since 2019 when it was detected at 7mm on chest X-ray. They did the PET in 2021 and the max uptake was 1.2 of the nodule, which at that time was 9x9m. This year it was 15mm on CT so they decided to remove it and therefore didn’t do the PET again.

Thank you so much! I feel very supported and that is very helpful

Vic83. The surgeons all say the pain will go away after a year, but it is the patient that goes away I think. LOL.

I think this is awful and have RA as well as 4th stage CKD, I'm facing some of these same decisions and have stage 1 adenocarcinoma.

I would just say get second opinion and/or consider a consultation with oncologist first. I know some have had radiation vs surgery for stage 1. Or they go into surgery with a default decision of wedge resection only if margins are clean. In my case, the surgeon stated emphatically that if nodule was malignant when they removed the wedge and sent it to pathology, he would remove the lobe it sat in. I didn't expect it to be malignant since he said it was only a 25% chance of that, so I didn't react to his statement. I deeply regret not seeking another opinion since I now believe I will never regain my lung capacity and will have some degree of chest constriction for eternity. I KNOW I have RA for life, so regret saddling myself with perhaps unnecessary restrictions.

pb50 Reading your post sounded like a scene in a horror movie. Vats was an acronym I was not familiar with.
I had "Robotic surgery" a" lobectomy of the left upper lobe The surgeon sat remotely but in the same room. Like a video game watching a screen while operating the controls with both hands and feet and voice recording in detail every procedure. VAT? The anesthesiologist was more hands-on. I had two small incisions, one for the camera, and the other for the "DaVinci Machines" tools, which were closed after surgery. Then another incision for a drain, and the receiver hung on the mobile tree next to my bed. When I was ready to go home they attached a similar but smaller container to my body and a nurse came to my house every day to check it, shortly thereafter she removed it, stitched it, gave me pads to cover it, and a kit to remove the stitches. I am 85 and seldom have pain except when my brain is trying to make me aware of something being untreated, no BS. They gave me oxycodone which I still have un-opened. It has been 5 years. A year ago I started aspirating, they discovered during my surgery they had severed the nerve to my left vocal (fold) chord, it is paralyzed and had become distorted allowing things I swallow to enter my airway. That's a story for another day, I am dealing with it.