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.

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?

kellywally | @kellywally | Jan 2, 2023

In reply to @bellpch9 "Yes" + (show)

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

bellpch9 | @bellpch9 | Dec 12, 2022

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

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

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?

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)

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.

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)

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.

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)

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?

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)

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

bellpch9 | @bellpch9 | Dec 4, 2022

Yes

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)

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?