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.

cathyprince50 | @cathyprince50 | Jan 7, 2023
In reply to @hopeful33250 "Hello @cathyprince50 and welcome to Mayo Connect. I'm sorry to hear of your daughter's diagnosis. As..." + (show)
@hopeful33250

Hello @cathyprince50 and welcome to Mayo Connect. I'm sorry to hear of your daughter's diagnosis. As you may know, here on Connect we are not medical professionals, just patients who support and encourage each other. Therefore, I cannot explain your daughter's diagnosis other than to say that she needs to address her concerns with her doctor.

I would encourage her to consult with a NET specialist. As you probably know, NETs are a rare form of cancer and not every oncologist is equipped to treat NETs. If you go to the Carcinoid Cancer Foundation, you can view Patient Resources and find information on specialists. Here is the link to the website, https://www.carcinoid.org/for-patients/

If you are comfortable with sharing more, what type of symptoms was your daughter experiencing when the diagnosis came about? Has she had surgery for the NET in the colon?

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Hello Theresa. Thank you for your interest in my daughter. I forgot to mention that my daughter was diagnosed with stage four colon cancer. During the Mayo Connect on Thursday evening I noticed that the contributors to the meeting were well spoken about living with their NETs. In august of 2022, my daughter thought that she had Crohn’s disease because of the pain and diarrhea she was experiencing. Her family doctor said that she could get a CT scan in several months. After attending at her family doctor three times she was eventually sent to the emergency department for a CT. That revealed a tumour on her descending colon. She had an emergency operation the next day and the tumour and perforated bowel were removed. The cancer had metastasized to the stomach lining and liver. It was a week later that the pathology results reported that she had a NET with carcinoid syndrome. The thirty-three week time line was very difficult on the family. Right now her quality of life is very poor and palliative help has just begun to step in. It is so heart wrenching to see my daughter suffering so much. I really appreciated listening to all the NETs people on the zoom meeting. The meeting was most helpful to me. Thank you again for listening to me recounting my daughters story. All the best to you all. P. S. She does appear to have a very good oncologist who specializes in NETs.

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 7, 2023
In reply to @cathyprince50 "Hello Theresa. Thank you for your interest in my daughter. I forgot to mention that my..." + (show)
@cathyprince50

Hello Theresa. Thank you for your interest in my daughter. I forgot to mention that my daughter was diagnosed with stage four colon cancer. During the Mayo Connect on Thursday evening I noticed that the contributors to the meeting were well spoken about living with their NETs. In august of 2022, my daughter thought that she had Crohn’s disease because of the pain and diarrhea she was experiencing. Her family doctor said that she could get a CT scan in several months. After attending at her family doctor three times she was eventually sent to the emergency department for a CT. That revealed a tumour on her descending colon. She had an emergency operation the next day and the tumour and perforated bowel were removed. The cancer had metastasized to the stomach lining and liver. It was a week later that the pathology results reported that she had a NET with carcinoid syndrome. The thirty-three week time line was very difficult on the family. Right now her quality of life is very poor and palliative help has just begun to step in. It is so heart wrenching to see my daughter suffering so much. I really appreciated listening to all the NETs people on the zoom meeting. The meeting was most helpful to me. Thank you again for listening to me recounting my daughters story. All the best to you all. P. S. She does appear to have a very good oncologist who specializes in NETs.

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Hello @cathyprince50

I'm so glad that you attended the online NETs support group meeting! The people in that group are very supportive and encouraging. I'm sure it is difficult for you to see your daughter so ill. "Heart-wrenching" is undoubtedly the right description.

Try to remember, that it takes at least six months to recover from surgery and since your daughter is also having chemo now, her recovery will be longer. I'm glad to hear that she has palliative help now. That will help her deal with the emotional and physical aspects of her condition.

Do you happen to know the name of the chemo that she is getting?

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peggymariejackson | @peggymariejackson | Jan 31, 2023

I was diagnosed in 2021 of a NET in my stomach,Every 6 months to a year I have EGD done and Catscans and labs.I have had to have a EGD done they always fine polphs and almost everytime they come out as NET.
They scan to make sure it hasen't spread.I have not had any treatment just removing them.I have a good doctor at the University of Michigan Oncologist,He told me these type of cancer is not life threating and they do have an injection to help it from spreading .I am still scared I have alot of cancer in ancestory and siblings.My mom died from anal rectal cancer.They found my NET originally in Jume 2021 which was a EGD.I recently went on 1/5/2023 and they found 2 NET again.I have had at least 7 hemoclips all are gone except 3.I read a certain types of medications with the ingredients of secukinumab please give me feedback

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 1, 2023
In reply to @peggymariejackson "I was diagnosed in 2021 of a NET in my stomach,Every 6 months to a year..." + (show)
@peggymariejackson

I was diagnosed in 2021 of a NET in my stomach,Every 6 months to a year I have EGD done and Catscans and labs.I have had to have a EGD done they always fine polphs and almost everytime they come out as NET.
They scan to make sure it hasen't spread.I have not had any treatment just removing them.I have a good doctor at the University of Michigan Oncologist,He told me these type of cancer is not life threating and they do have an injection to help it from spreading .I am still scared I have alot of cancer in ancestory and siblings.My mom died from anal rectal cancer.They found my NET originally in Jume 2021 which was a EGD.I recently went on 1/5/2023 and they found 2 NET again.I have had at least 7 hemoclips all are gone except 3.I read a certain types of medications with the ingredients of secukinumab please give me feedback

Jump to this post

Hello @peggymariejackson and welcome to the NETs discussion group at Mayo Connect. Given your family history of cancer, I can certainly understand your concern about your own NETs history. I have also had three surgeries for NETs in the upper digestive tract and like you, I also go to The University of Michigan. I have had no other treatment, however, just the surgeries.

Have you had any symptoms of carcinoid syndrome such as facial flushing, diarrhea, etc.?

You mentioned a medication with the ingredient of "secukinumab." Was this recommended by your oncologist or is it to treat another health condition?

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 1, 2023
In reply to @cathyprince50 "Hello Theresa. Thank you for your interest in my daughter. I forgot to mention that my..." + (show)
@cathyprince50

Hello Theresa. Thank you for your interest in my daughter. I forgot to mention that my daughter was diagnosed with stage four colon cancer. During the Mayo Connect on Thursday evening I noticed that the contributors to the meeting were well spoken about living with their NETs. In august of 2022, my daughter thought that she had Crohn’s disease because of the pain and diarrhea she was experiencing. Her family doctor said that she could get a CT scan in several months. After attending at her family doctor three times she was eventually sent to the emergency department for a CT. That revealed a tumour on her descending colon. She had an emergency operation the next day and the tumour and perforated bowel were removed. The cancer had metastasized to the stomach lining and liver. It was a week later that the pathology results reported that she had a NET with carcinoid syndrome. The thirty-three week time line was very difficult on the family. Right now her quality of life is very poor and palliative help has just begun to step in. It is so heart wrenching to see my daughter suffering so much. I really appreciated listening to all the NETs people on the zoom meeting. The meeting was most helpful to me. Thank you again for listening to me recounting my daughters story. All the best to you all. P. S. She does appear to have a very good oncologist who specializes in NETs.

Jump to this post

Hello @cathyprince50

It has been a few weeks since you last posted. I was thinking about you and wondering how your daughter was doing with her treatments.

Also, the NETs support group will be meeting this Thursday, Feb. 2, via Zoom. I hope you can join the group.

Could you post an update when it's convenient for you?

REPLY
peggymariejackson | @peggymariejackson | Feb 1, 2023
In reply to @hopeful33250 "Hello @peggymariejackson and welcome to the NETs discussion group at Mayo Connect. Given your family history..." + (show)
@hopeful33250

Hello @peggymariejackson and welcome to the NETs discussion group at Mayo Connect. Given your family history of cancer, I can certainly understand your concern about your own NETs history. I have also had three surgeries for NETs in the upper digestive tract and like you, I also go to The University of Michigan. I have had no other treatment, however, just the surgeries.

Have you had any symptoms of carcinoid syndrome such as facial flushing, diarrhea, etc.?

You mentioned a medication with the ingredient of "secukinumab." Was this recommended by your oncologist or is it to treat another health condition?

Jump to this post

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

REPLY
1 reply
tennisfan | @tennisfan | Feb 2, 2023
In reply to @hopeful33250 "Hello @peggymariejackson and welcome to the NETs discussion group at Mayo Connect. Given your family history..." + (show)
@hopeful33250

Hello @peggymariejackson and welcome to the NETs discussion group at Mayo Connect. Given your family history of cancer, I can certainly understand your concern about your own NETs history. I have also had three surgeries for NETs in the upper digestive tract and like you, I also go to The University of Michigan. I have had no other treatment, however, just the surgeries.

Have you had any symptoms of carcinoid syndrome such as facial flushing, diarrhea, etc.?

You mentioned a medication with the ingredient of "secukinumab." Was this recommended by your oncologist or is it to treat another health condition?

Jump to this post

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.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 2, 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.

Jump to this post

@tennisfan

I appreciate the update but sorry to hear that an inoperable tumor was found. You must be very disappointed. What type of scan/test was used to find this tumor?

I look forward to hearing from you again and I hope that you continue to post during this process.

Was the tumor found based on symptoms you were having?

REPLY
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

Jump to this post

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?

REPLY
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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