Describe your recovery from lung NET surgery

Posted by emilyfaith @emilyfaith, May 2, 2024

77, female, diagnosed withNET carcinoid tumors in LLlung and left lymph nodes. No other organs lighting up on scans, of which there were many. No symptoms, and otherwise in good health. Tumor board recommends surgery removal of entire lower left lobe. Please describe your surgery experience.

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sbrown959 | @sbrown959 | 4 days ago

In reply to @tomrennie "@sbrown959 What symptoms did you have prior to surgery?" + (show)

@tomrennie falling, bumping into walls, heliotropic rash, coughing, coughing up lots of goo, chest tightness, gotrons papules, papura, sinus infections and severe swelling in my face, dry mouth, dry eyes, bladder infections, diverticulitus, autoimmune hell, brain fog, intense fatigue, hip and neck pain with difficulty walking.

sbrown959 | @sbrown959 | 4 days ago

In reply to @sbrown959 "@tomrennie falling, bumping into walls, heliotropic rash, coughing, coughing up lots of goo, chest tightness, gotrons..." + (show)

@sbrown959 once they finally went looking, a dotate scan lit up my lung. Next week, they took out the lobe, I almost instantly felt better, even thought they had just punched through my ribs in six places.

sbrown959 | @sbrown959 | 4 days ago

In reply to @sbrown959 "@sbrown959 once they finally went looking, a dotate scan lit up my lung. Next week, they..." + (show)

@sbrown959 a year later, my gait is still unsteady and i have pain when walking, but it is much better that it was.

Turkey, Volunteer Mentor | @tomrennie | 4 days ago

In reply to @sbrown959 "@tomrennie falling, bumping into walls, heliotropic rash, coughing, coughing up lots of goo, chest tightness, gotrons..." + (show)

@sbrown959 Wow. What was your official diagnosis?

haelsky | @haelsky | 4 days ago

In reply to @pantfan "@haelsky Thank you for responding. It seems as you had a major surgery. Sorry to hear..." + (show)

@pantfan
In NYC only Mt. Sinai is a designated NET center
I see a thoracic oncologist who is knowledgeable
and a pulmonologist but this is not their specialty at the Perlmutter Cancer Center
Do you see a NET specialist?

haelsky | @haelsky | 4 days ago

In reply to @pantfan "@haelsky Thank you for responding. It seems as you had a major surgery. Sorry to hear..." + (show)

Dr. Michael Zervos is my surgeon.

pantfan | @pantfan | 4 days ago

In reply to @haelsky "@pantfan In NYC only Mt. Sinai is a designated NET center I see a thoracic oncologist..." + (show)

@haelsky I am waiting for Mt. Sinai to call me with an appointment once they receive my slides.

haelsky | @haelsky | 4 days ago

In reply to @pantfan "@haelsky I am waiting for Mt. Sinai to call me with an appointment once they receive..." + (show)

@pantfan
Thank you for your response
I hope all goes smoothly for you!
I will wait until my second surveillance scan in July to determine my ongoing care needs.