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.

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.

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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?

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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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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?

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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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1 reply
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?

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bellpch9 | @bellpch9 | Dec 12, 2022

They have done no lab work on the adrenal. All other blood work is good

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kellywally | @kellywally | Jan 2, 2023
In reply to @bellpch9 "Yes" + (show)
@bellpch9

Yes

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Why does report state metastatic lesion, does that mean tumor started elsewhere besides the adrenal gland?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 4, 2023

Hello @kellywally and welcome to Mayo Connect and the NETs discussion group. I'm sure that you do have questions regarding the report where you read the "metastatic lesion." Have you previously had a diagnosis of NETs or other type of cancer? If so, where was it located?

If this is your first cancer diagnosis, would you share what symptoms you were having?

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cathyprince50 | @cathyprince50 | Jan 5, 2023

Hello Theresa. Can you tell me how serious a descending colon NET that has metastasized to the stomach lining and 83% (at least) to the liver. My daughter of 39 years was first diagnosed at the end of October.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 5, 2023
In reply to @cathyprince50 "Hello Theresa. Can you tell me how serious a descending colon NET that has metastasized to..." + (show)
@cathyprince50

Hello Theresa. Can you tell me how serious a descending colon NET that has metastasized to the stomach lining and 83% (at least) to the liver. My daughter of 39 years was first diagnosed at the end of October.

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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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