1. < Neuroendocrine Tumors (NETs)

Newly diagnosed - neuroendocrine tumor in intestines

Posted by wagneriandreamer @wagneriandreamer, Oct 31, 2022

on routine ct scan found a small abdominal mass. wasn't clear where it was originating from . went to gyn oncology. finally decided it wasn't gyn. had mri. was scheduled for surgury but surgeon wanted endodrine to clear me first. she did labs, 24 hr urine and pet scan. some labs and first urine got "screwed up by lab. my tumor has gotte.n much ,much larger. it has been a month since this happened. my surgury has been rescheduled twice. i am scared!!!! i feel like by the time i can have surgury they will tell me "it is to late. i had faith in all my drs seen here but now worried i should have gotten 2nd opinions at the start and now it is to late.

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tennisfan | @tennisfan | Feb 3, 2023
In reply to @tennisfan "Hi. I ask have had three surgeries and to date no other treatment. However, I was..." + (show)
@tennisfan

Hi. I ask have had three surgeries and to date no other treatment. However, I was just diagnosed with another tumor that for numerous reasons is inoperable. Protocols not yet determined. I will post you. Smart to take your case to a university/teaching hospital.

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Just off a virtual call with the doctors. They are putting me on a regimen of monthly Octreotide injections to shrink the tumors and reduce the carcinoid symptoms.

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1 reply
tennisfan | @tennisfan | Feb 3, 2023

Get to a university hospital/teaching hospital. Nets are very slow growing. I have had mine for almost 20 years. They are rare hence the recommendation to a university hospital.

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Teresa, Volunteer Mentor | @hopeful33250 | Feb 4, 2023
In reply to @tennisfan "Just off a virtual call with the doctors. They are putting me on a regimen of..." + (show)
@tennisfan

Just off a virtual call with the doctors. They are putting me on a regimen of monthly Octreotide injections to shrink the tumors and reduce the carcinoid symptoms.

Jump to this post

@tennisfan

I hope that the Octreotide injections are helpful to you in managing the carcinoid symptoms as well as reducing the tumors.

When will you be having your first injection?

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1 reply
tennisfan | @tennisfan | Feb 5, 2023
In reply to @hopeful33250 "@tennisfan I hope that the Octreotide injections are helpful to you in managing the carcinoid symptoms..." + (show)
@hopeful33250

@tennisfan

I hope that the Octreotide injections are helpful to you in managing the carcinoid symptoms as well as reducing the tumors.

When will you be having your first injection?

Jump to this post

Not scheduled yet, I’m waiting to hear back on the appointment. So many possible side effects.

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