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.

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

janmar1960 | @janmar1960 | Feb 17 3:17am
In reply to @rogers5870 "Had your first primary tumor that was removed already spread ? I’m trying to understand if..." + (show)
@rogers5870

Had your first primary tumor that was removed already spread ? I’m trying to understand if they found the NET IN 2011 and removed it how in 2022 the tumor spread ? Was this a new tumor found ?

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You need to understand NET cancer , it regularly stays in the body and needs minitoring for years to for spread. Yes surgery can be curative but as a sufferer it regularly spreads

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rogers5870 | @rogers5870 | Feb 15 8:12am
In reply to @char1962 "It’s never to late you come to the right place , I’m a Neuroendocrine survivor I..." + (show)
@char1962

It’s never to late you come to the right place , I’m a Neuroendocrine survivor I had surgery to remove a tumor in 2011 from my small intestines and I didn’t know what it was I suffered with stomach pain for years and was misdiagnosed with IBM , fast forward 2022 the tumors spread ,I was told carcinoid cancer is a slow growing cancer by many oncologists and it was from 2011 to 2022 I had no problems , I understand the fear you have. the surgeon that wanted to check the endocrine first , must feel like your case is not life threatening but with the continued growth you have to be proactive and seek second opinion, I pray you get resolution soon

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Had your first primary tumor that was removed already spread ? I’m trying to understand if they found the NET IN 2011 and removed it how in 2022 the tumor spread ? Was this a new tumor found ?

REPLY
1 reply
rogers5870 | @rogers5870 | Feb 15 1:47am
In reply to @char1962 "It’s never to late you come to the right place , I’m a Neuroendocrine survivor I..." + (show)
@char1962

It’s never to late you come to the right place , I’m a Neuroendocrine survivor I had surgery to remove a tumor in 2011 from my small intestines and I didn’t know what it was I suffered with stomach pain for years and was misdiagnosed with IBM , fast forward 2022 the tumors spread ,I was told carcinoid cancer is a slow growing cancer by many oncologists and it was from 2011 to 2022 I had no problems , I understand the fear you have. the surgeon that wanted to check the endocrine first , must feel like your case is not life threatening but with the continued growth you have to be proactive and seek second opinion, I pray you get resolution soon

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How big and what grade was your initial tumor in 2011? Had it spread at that time?

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splendrous | @splendrous | Nov 11, 2024
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.

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I understand you have had neuroendocrine tumors for many years. Were you receiving any treatment prior to Feb 2023 when you started octreotide shots?

I was recently diagnosed with metastatic liver neuroendocrine tumors, well differentiated, grade 2 KI-67 6-8%. I am looking at starting octreotide shots are to watch and wait. Thanks for sharing.

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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?

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

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Mentor
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.

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@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 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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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.

REPLY
2 replies
peggymariejackson | @peggymariejackson | Feb 2, 2023

Thank you Ladies I am really sorry about the other tumor, It is very weird with the Net that is why my doctor has a Cat scan done to make sure it hasn't spread.Does anyone else take Biologics I could not help but take my cosentyx this morning my arthritis not doing good.I dont even know if that is what caused it.My thoughts and prayers that we all get through this

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 2, 2023
In reply to @peggymariejackson "I take cosentyx for arthritis which I sometimes wonder if this could be causing my NET..." + (show)
@peggymariejackson

I take cosentyx for arthritis which I sometimes wonder if this could be causing my NET for I found info that Cosentyx causes NET,By looking over my meds I take more than Cosentyx with secukinumab in it.It is a biologic drug I have reached out to my doctor and the FDA both say it is not researche with causing it.I am so wishy washy about taking it,It helps alot because mine gets so bad that I cant move plus fibro.Just a mess.My Dr Enzler he is really good so I am sure he knows what he is doing.Just wonder because so many people have treatment.I feel better knowing someone is out there.I do have the flushing and diahrrea and have been having it for been years always said it was IBS.I get nausea alot.It hard to say for I am insulin dependent for diabetes.I live in the upper peninsula the care is not good at all.I wish you luck

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Hello @peggymariejackson,

I appreciate your response. It is confusing to try and figure out the reasons for NETs, isn't it? You mentioned that you have had diarrhea and flushing. These can be symptoms of carcinoid syndrome and there are monthly injections to help with those symptoms if carcinoid syndrome is the culprit.

Have you mentioned these symptoms to your U of M oncologist?

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