1. < Neuroendocrine Tumors (NETs)
Profile picture for emilyfaith

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.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Profile picture for sbrown959
sbrown959 | @sbrown959 | 3 days ago
In reply to @tomrennie "@sbrown959 Wow. What was your official diagnosis?" + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

@sbrown959 Wow. What was your official diagnosis?

Jump to this post

@tomrennie slow growing neuroendocrine lung tumor 2.2cm removed, a year later nothing on dotate scan seen. With additional Hashimotos Disease, MDA 5 postive Dermomatomyositis, Sjogrens, and Reynauds. Before the cancer was removed there was also NXP2 showing in my tests, it is gone now. They would say thats rare might be a mistakr and then a different lab would pick it up and they would say we just dont know, there os very little known about it. While, I still struggle with intense pain in my legs and neck, it is better without the tumor. No one really knows what to do to treat it. Some days are very difficult others are better.

REPLY
2 replies
Profile picture for haelsky
haelsky | @haelsky | 1 day ago
In reply to @sbrown959 "@tomrennie slow growing neuroendocrine lung tumor 2.2cm removed, a year later nothing on dotate scan seen...." + (show)
Profile picture for sbrown959 @sbrown959

@tomrennie slow growing neuroendocrine lung tumor 2.2cm removed, a year later nothing on dotate scan seen. With additional Hashimotos Disease, MDA 5 postive Dermomatomyositis, Sjogrens, and Reynauds. Before the cancer was removed there was also NXP2 showing in my tests, it is gone now. They would say thats rare might be a mistakr and then a different lab would pick it up and they would say we just dont know, there os very little known about it. While, I still struggle with intense pain in my legs and neck, it is better without the tumor. No one really knows what to do to treat it. Some days are very difficult others are better.

Jump to this post

@sbrown959
My surgery was on 9/22/25
Everyday is different
GERD
SHORT OF BREATH
INTERMITTENT COUGH
NERVE PAIN
Weather impacts if I can go
outside- humidity and heat
extreme cold all impact
me

No other option but surgery
It is an ongoing adjustment

REPLY
Profile picture for Turkey, Volunteer Mentor
Mentor
Turkey, Volunteer Mentor | @tomrennie | 1 day ago
In reply to @sbrown959 "@tomrennie slow growing neuroendocrine lung tumor 2.2cm removed, a year later nothing on dotate scan seen...." + (show)
Profile picture for sbrown959 @sbrown959

@tomrennie slow growing neuroendocrine lung tumor 2.2cm removed, a year later nothing on dotate scan seen. With additional Hashimotos Disease, MDA 5 postive Dermomatomyositis, Sjogrens, and Reynauds. Before the cancer was removed there was also NXP2 showing in my tests, it is gone now. They would say thats rare might be a mistakr and then a different lab would pick it up and they would say we just dont know, there os very little known about it. While, I still struggle with intense pain in my legs and neck, it is better without the tumor. No one really knows what to do to treat it. Some days are very difficult others are better.

Jump to this post

@sbrown959 Other than the neuroendocrine lung tumor, I don't know what any of the other diagnoses are. Have you sought out input from a palliative care doctor to help with the pain?

REPLY
1 reply
Profile picture for sbrown959
sbrown959 | @sbrown959 | 1 day ago
In reply to @tomrennie "@sbrown959 Other than the neuroendocrine lung tumor, I don't know what any of the other diagnoses..." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

@sbrown959 Other than the neuroendocrine lung tumor, I don't know what any of the other diagnoses are. Have you sought out input from a palliative care doctor to help with the pain?

Jump to this post

@tomrennie yes, but all I get is, "I don't know." They say it is all rare and there is not much research, but AI seems to have a lot.

REPLY
1 reply
Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 1 day ago
In reply to @sbrown959 "@tomrennie yes, but all I get is, "I don't know." They say it is all rare..." + (show)
Profile picture for sbrown959 @sbrown959

@tomrennie yes, but all I get is, "I don't know." They say it is all rare and there is not much research, but AI seems to have a lot.

Jump to this post

Hello @sbrown959

I think @tomrennie's suggestion (to see a palliative care doctor) is a good idea. They can help with pain management. It would be good to ask your oncology team to refer you to a palliative care team. Here is a link with information about palliative care from Mayo Clinic's website:
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637
Here is a link to a Mayo Connect discussion group where members discuss their experiences with palliative care:
--How to Care for Chronic Pain
https://connect.mayoclinic.org/discussion/how-to-care-for-chronic-pain/
I look forward to hearing from you again. Will you post about your progress in dealing with this pain?

REPLY
Please sign in or register to post a reply.