Describe your recovery from lung NET surgery

Hi , I am 72 . I was diagnosed with Carcinoid tumors all over my lungs. I was diagnosed 8 years ago. I am very active and other than that in good health . Last year they suggested I removed lower lobe as one of the tumors was starting to grow . I had the surgery by a robot , thus less invasive . A small hole in my back is where they entered. The most uncomfortable thing was the breathing tube which they kept in for 12 hours. I left the hospital after 24 hours . Recovery took a few weeks , but after a week I was running about . Although it has been over a year , sometimes I still get a pain where the tube was . I was told tissue damage can take years to repair . I travel the world and do almost everything. My only challenge is walking up a hill or up a stairway. Other than that I can walk for miles and bike for miles . If you are contemplating the surgery , do it …..get it over with and you will be fine. Best of luck to you. If you wish to discuss further you can email me directly ( ronalgold@yahoo.com).

Thank you for your reply. I’m vert glad that your recovery was so smooth.

My surgery will also be robotic. I’m not convinced my recovery will be as easy as yours. Logically I know I should have surgery but emotionally I’m still very hesitant. I guess I just need time.

Thanks again. Emily

@emilyfaith
Last year I talked to a lady who had a very large carcinoid tumor at 70, had one lobe removed, healed up great, no residual breathing issues. She is 80 now, has had a yearly scan every year and never had another issue. One and done. Prayers for your healing and peace of mind.

See comments by annj as I also had my left lower lung removed due to a 1.3 cm neuroendocrine carcinoid. Lymph nodes were removed and path stated clear. No symptoms prior just happened to discover in another scan 13 years ago so watched it periodically. Post-op is painful but manageable. Once the chest tube is removed, felt so much better. Historically, I am a walker so lungs were in great shape. Began walking again in increments and was feeling 'normal' after a couple of weeks.

Wow, what good news! Thank you for your reply. I think I need time to overcome my emotional hesitancy.

Thank you again, Emily

Thank you for your reply. So glad you are feeling healthy. Intellectually I think I should have the surgery. I think I need time to work it through emotionally.

Thank you again. Emily

@emilyfaith

It’s a very significant decision and your emotions are understandable and justified. I would feel the same way as you do as I’m not one to go for elective surgeries. I dread every procedure because of course I'd rather not do it. It always feels different when it’s our own body. Hopefully your tumor is slow growing so there is no rush. Once you make peace with it, it’s just good to know as the magic 8 ball would say, “Outlook looks good!” 😊

I like your 8 ball’s prediction. I think I’ll go get my own!

Thanks! Emily

In 2019 it was accidentally discovered that I had a lesion on the lower right lobe of my lung. We watched it, and, in 2024, it showed growth and lighting up on PET scan. I will be seeing Dr Andrew Brownlee at Cedars Sinai at the end of May for a consult and set a surgery date. The lesion is now 2.1 cm by 1.9 cm. I've decided to have it removed rather to continue to "wait and see" and subject myself to more observations tests and radiation over the next few years. I'd also rather have the lesion removed while I'm still young @ 66 yrs - HA!! and while my heart is still working as it should. I've been a bit nervous wondering about what post-op would look like so thank you for describing it, now I know what to expect. Hoping this also is a "one and done".

Wishing everyone good health for the remaining years. xo

EmilyFaith, l can hear your fear in your words. My question is do you have a Team of NET. Specialist that can help you through your decision? I know both my lungs have baby Nets. right side slowly getting larger. I have gotten independent, who saying the same thing, at 74, taking a love out will slow the progression down. I have had the Roboic arm for two other procedures and l trust them over a human mind and hand. I didn't count on the surgeon reading the pathology report wrong. I would want the Robot to read it. You will heal, l will send you blessings for strength to make your decision.