Cure Alveolar Soft Part Sarcoma International (iCureASPS)

So it is now 2 months since my surgery. The incision no longer hurts, but I have a definite discomfort in my chest. It is kind of hard to describe. The pain is most noticable when I wake up in the morning. I feel almost a tightness, resulting from a reluctance to breath in too deeply. There is also a dryness to the pain, like my lungs are dehydrated? I had this feeling mildly before the surgery, but it is much worse now.
I had been pretty sick for almost two weeks prior, so maybe it is just residual infection pains?

On a scale of 1 to 10, what is the pain?

Your lungs won't ever feel 100% normal, but you shouldn't feel much pain. They'll be 95% for capacity After 2 months you should be running and biking full effort. Your mild pain should diminish with more exercise as you stretch your lungs out. You should hear rubbing and wheezing noises, etc. This should diminish over time, but it's not going to completely go away. There should be no sharp pain at any point. A complete recovery will take six months to a year.

Ivan wrote:On a scale of 1 to 10, what is the pain?

It had almost gone away until I got moderately sick for like two weeks plus (stayed home for part of a day once). When I wrote this message it was probably a 2-3 up to a 4 when I first wake up. It's hard to judge because all those pain killers seem to make pain much more pronounced as you come off of them, so I may just be over-sensitive. I think you are right about the exercise. I hadn't been doing much while I was sick, but I did some yoga and some jumping jacks last night and felt much better this morning. I will definitely continue those, and look in to talking my boss in to letting me use the stationary bike at work.
I have an appointment with my PCP tomorrow so I will talk to him about it also. I had mentioned a similar pain to him last year, before surgery, and he had suggested it might be pleurisy. I have what the radiologist called "mild" pectus excavatum too, so that effects my pulmonary function to a degree.

Would you describe your post-op pain in a similar fashion? I wish I could describe it better--this will sound odd, but my lungs almost feel "ashy" at times.

Do cardio (such as stationary bike) which gets your lungs to work. 30 minutes of moderately high effort. The more you do it, the less pain you should feel over time. If it gets worse, something is definitely wrong.

4 is pretty damn high. Yes, an ache with deep breathing is normal but it should be more like 1 or 2. If you exercise it will go almost completely away after 6 months or so. Just get the lungs working so that they can recover.

Josh, have you had any X-Rays since you came back from the surgery?
There is a bit of the gray zone in the follow up after the laser assisted surgery in Germany - technically the local docs are not following you as they would if the open lung surgery was done at home - the control of the lung being fully inflated and no airleaks etc. is not done. I suggest to anyone who is going for the surgery in Germany, at least notify your primary physician or oncologist. While in Germany, request an information letter to be written by Dr.Rolle in English describing the nature of surgery and its extend. When you came back, visit the GP or oncologist and submit a copy of that letter for their information. Ask them to hear your breathing and for the simple post-op X-ray in about a week after you are back.
Ivan had a pneumothorax in 1 month after the first laser assisted surgery in Germany - there was a tear in one of the treated spot inside of his right lung, then the airleak developed and the air filled the volume between the lung and the pleura and pushed the lung down, it has partially collapsed. It is a very rare complication after the lung surgery but some complications are not rare and the recovery takes time and training so the lung is fully expanded and there is no fluid.
The other thing is that you might have some temporary airways damage from the intubation during the surgery. Or have some co-existing condition - one of our patient's was found on the pre-op work out at the hospital in Coswig to have asthma that they were not aware about.