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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 10, 2022
In reply to @bellpch9 "THANK YOU for your reply, ❤️🎄 I want to know if it’s cancerous before I cash..." + (show)
@bellpch9

THANK YOU for your reply, ❤️🎄
I want to know if it’s cancerous before I cash pay 700 MRI the CT scan already shows it’s adrenal gland. A blood and urine tests can do testing to see if it’s cancerous by the levels.
Why can’t they tell me if the adrenal gland MRI will tell if it is cancerous or not no one has answered this serious question.

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@bellpch9

It would be good to ask them that question and let them know of the financial concerns you have. Could you share what sort of blood tests (or other lab work) that you have had so far?

REPLY
bellpch9 | @bellpch9 | Dec 10, 2022
In reply to @hopeful33250 "Hello @bellpch9 CT scans and MRIs are both used to view and diagnose problems. In some..." + (show)
@hopeful33250

Hello @bellpch9

CT scans and MRIs are both used to view and diagnose problems. In some cases, an MRI will give the doctor a better picture of what is going on. Once during a CT scan, cysts were seen on my pancreas. Since the pancreas is better viewed with an MRI, I now have follow ups with an MRI, rather than a CT scan. It could be that the reason your doctor is requesting an MRI is for a better picture of the adrenal gland tumor.

I'm wondering why you are questioning the need for an MRI. Have you had an MRI previously? Do you feel frightened by the MRI or about any further diagnosis?

Jump to this post

THANK YOU for your reply, ❤️🎄
I want to know if it’s cancerous before I cash pay 700 MRI the CT scan already shows it’s adrenal gland. A blood and urine tests can do testing to see if it’s cancerous by the levels.
Why can’t they tell me if the adrenal gland MRI will tell if it is cancerous or not no one has answered this serious question.

REPLY
1 reply
outlawcancer | @outlawcancer | Dec 9, 2022
In reply to @colleenyoung "Hi @wagneriandreamer, I hope your surgery went well on the 15th. I just wanted to let..." + (show)
@colleenyoung

Hi @wagneriandreamer, I hope your surgery went well on the 15th. I just wanted to let you know that I was thinking of you and look forward to your update when you're able.

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Hello @wagneriandreamer , I’m new to this chat. I was just recently diagnosed with PNET. I was just checking in to see how your surgery went. Hope all is well and that your on the road to recovery.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 4, 2022
In reply to @bellpch9 "I was told to get a MRI but I think I need a blood test CT..." + (show)
@bellpch9

I was told to get a MRI but I think I need a blood test CT should be enough and a specialist.

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Hello @bellpch9

CT scans and MRIs are both used to view and diagnose problems. In some cases, an MRI will give the doctor a better picture of what is going on. Once during a CT scan, cysts were seen on my pancreas. Since the pancreas is better viewed with an MRI, I now have follow ups with an MRI, rather than a CT scan. It could be that the reason your doctor is requesting an MRI is for a better picture of the adrenal gland tumor.

I'm wondering why you are questioning the need for an MRI. Have you had an MRI previously? Do you feel frightened by the MRI or about any further diagnosis?

REPLY
1 reply
bellpch9 | @bellpch9 | Dec 4, 2022
In reply to @hopeful33250 "Hello @bellpch9 and welcome to Mayo Connect. From your post, it looks as if you have..." + (show)
@hopeful33250

Hello @bellpch9 and welcome to Mayo Connect. From your post, it looks as if you have a tumor on the adrenal gland. Is that correct? Is the urine test to determine if this is a NET?

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I was told to get a MRI but I think I need a blood test CT should be enough and a specialist.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 3, 2022
In reply to @bellpch9 "Urine results are very important I was told. I’m at that stage just got CT scan..." + (show)
@bellpch9

Urine results are very important I was told.
I’m at that stage just got CT scan on adrenal gland back they want MRI but we are cash pay stuck across country, I asked for urine sample first. Stuck in between 😳
Praying for your success.

Jump to this post

Hello @bellpch9 and welcome to Mayo Connect. From your post, it looks as if you have a tumor on the adrenal gland. Is that correct? Is the urine test to determine if this is a NET?

REPLY
1 reply
bellpch9 | @bellpch9 | Dec 3, 2022
In reply to @wagneriandreamer "I feel much better after talking to the surgeon again. My 24 HR urine results are..." + (show)
@wagneriandreamer

I feel much better after talking to the surgeon again. My 24 HR urine results are in but the endocrinologist hasn't called yet. Most of the results were within range but the meta -nephrine was low as well as the epinephrin. according to the surgeons notes from my visit she will be starting me on some kind of blockers before the surgery . hopefully all the pre open stuff is taken care of now and I can concentrate on trying to have a positive attitude.

Jump to this post

Urine results are very important I was told.
I’m at that stage just got CT scan on adrenal gland back they want MRI but we are cash pay stuck across country, I asked for urine sample first. Stuck in between 😳
Praying for your success.

REPLY
1 reply
triveraderubio | @triveraderubio | Nov 20, 2022
In reply to @char1962 "I’m so happy to announce I had a good report on yesterday, November 7 my cat..." + (show)
@char1962

I’m so happy to announce I had a good report on yesterday, November 7 my cat scan show no growths from the tumors on my liver and ovaries so the sandostatin shots are working , I cried with tears of joy the anticipation was a roller coaster of emotions but I kept the faith , my faith in God is what keeps me grounded, I thank God for this support group it’s been so helpful to me during this health journey in my life 💕

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God is Good! Amén! Thank you for sharing! 🥰

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 19, 2022
In reply to @wagneriandreamer "it's scheduled for the 15th of this month. i will definetly update you. How's that for..." + (show)
@wagneriandreamer

it's scheduled for the 15th of this month. i will definetly update you. How's that for being positive??? several weeks ago i didn't think it would make it through surgery. i'm really trying to stay positive.

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Hi @wagneriandreamer, I hope your surgery went well on the 15th. I just wanted to let you know that I was thinking of you and look forward to your update when you're able.

REPLY
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