Describe your recovery from lung NET surgery

@wushirl
An interventional pulmonologist does biopsies - minimally invasive procedures. Pulmonologist only medications.

@haelsky Good to know, thank you! A thoracic surgeon had done my lung biopsy. I was told I didn't need a pulmonologist, but after months of struggling to breathe post-lobectomy I went and saw one anyway.

@wushirl
I am glad that you advocated for yourself and saw a pulmonologist. Was the pulmonologist helpful? Did he offer you any other suggestions or medications?

@hopeful33250 She was not helpful and had awful bedside manner. She refused to do a PFT for another 6 months. The respiratory therapist who did the PFT had me use an albuterol inhaler halfway through, and remarked that my breathing improved with it. She suggested I make use of mine more, and that I discuss a maintenance inhaler with the doctor. The pulmonologist didn't get back to me about the results until a month later and said via Portal message that "asthma is noted." I never had asthma before the surgery, I guess post-lobectomy it's like I have asthma sometimes? I had to message her back to ask about the maintenance inhaler, she didn't suggest it. Her nurse messaged back to say I can have one with "proper oral hygiene." I was very annoyed, I asked "Can you tell me what that entails? I can guess, but I've never had to use a maintenance inhaler so it would be helpful to spell it out for me." At my friend's insistence I also asked for a spacer, which has helped me get the powder in my throat rather than sprayed on my tongue. I'm still not sure this dosage is enough, I don't feel super different on the maintenance inhaler, but leaning more on the albuterol in freezing temperatures, on humid days, and before any heavy cardio has made a difference.

At my initial visit, the pulmonologist also acted like I was a hypochrondriac for asking about pulmonary therapy, saying it seemed like I had "unresolved anxiety." About having had cancer?? Or having difficulty breathing months later? Are you kidding?? Yes, I know mine was a "best-case scenario," but the diagnosis process felt traumatic, not least because of the additional false positives and extra biopsy, and I did not recover well for some time from the lobectomy.

It's on my to-do list to find a new pulmonologist. Do you have one? Do you have any advice?

@wushirl
I'm sorry to hear that your pulmonologist appointment was not as helpful as you had hoped. While I do have asthma, I have not had lung NETs (my NETs have been in the digestive tract).

I would like to invite other members (@rogo, @emilyfaith @californiazebra, @nannybb, and @nannybb and @jhhaas) with lung NETs to share their experiences with inhalers and post-surgery issues.

How long ago was your surgery?

@wushirl
I'm sorry to hear that your pulmonologist appointment was not as helpful as you had hoped. While I do have asthma, I have not had lung NETs (my NETs have been in the digestive tract).

I would like to invite other members (@rogo, @emilyfaith @californiazebra, @nannybb, and @nannybb and @jhhaas) with lung NETs to share their experiences with inhalers and post-surgery issues.

How long ago was your surgery?

Hello @wushirl
As you can see, two members, @nannybb and @jhhaas, have discussed their post-surgery recovery. Feel free to click on the"Reply" button beneath their posts and ask them any questions you might have.

Just going for my 3 rd Broncoscopy, this time with biopsy as they are checking to see if I have 2 types of lung nodules. Very worried as 3 of them are growing over 3mm. Surgeon seems very keen on research. I have tried 4 types of inhalers and they all make me cough harder and provide no relief. I really do not cough much but when I do it is a fit. Hoping to keep up to date here and get help deciding the issues as they arise. Had the carcinoid tumors discovered 30 years ago at age 40. They have been watched sporadically for growth only for the last 6 years but only difference is that I now sleep with oxygen and a CPAP. I use oxygen over 7000 ft. And with strenuous exercise.

@hopeful33250 She was not helpful and had awful bedside manner. She refused to do a PFT for another 6 months. The respiratory therapist who did the PFT had me use an albuterol inhaler halfway through, and remarked that my breathing improved with it. She suggested I make use of mine more, and that I discuss a maintenance inhaler with the doctor. The pulmonologist didn't get back to me about the results until a month later and said via Portal message that "asthma is noted." I never had asthma before the surgery, I guess post-lobectomy it's like I have asthma sometimes? I had to message her back to ask about the maintenance inhaler, she didn't suggest it. Her nurse messaged back to say I can have one with "proper oral hygiene." I was very annoyed, I asked "Can you tell me what that entails? I can guess, but I've never had to use a maintenance inhaler so it would be helpful to spell it out for me." At my friend's insistence I also asked for a spacer, which has helped me get the powder in my throat rather than sprayed on my tongue. I'm still not sure this dosage is enough, I don't feel super different on the maintenance inhaler, but leaning more on the albuterol in freezing temperatures, on humid days, and before any heavy cardio has made a difference.

At my initial visit, the pulmonologist also acted like I was a hypochrondriac for asking about pulmonary therapy, saying it seemed like I had "unresolved anxiety." About having had cancer?? Or having difficulty breathing months later? Are you kidding?? Yes, I know mine was a "best-case scenario," but the diagnosis process felt traumatic, not least because of the additional false positives and extra biopsy, and I did not recover well for some time from the lobectomy.

It's on my to-do list to find a new pulmonologist. Do you have one? Do you have any advice?