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Just got the news… stage 2 Carcinoid tumors

Neuroendocrine Tumors (NETs) | Last Active: Oct 23, 2022 | Replies (15)
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@nathanb1979

I just learned I have a prostate neuroendocrine tumor I did the urine test first by my endocrinologist and it was 11 on first one and 16 a week later I had a pet scan lit up my prostate areas like a Christmas tree? So I am not as far along as you in diagnosis l. I have a biopsy not my prostate Oct 14th and a cystoscopy? I don't know what that will tell them if anything do you? I'm 42 so... I'm scared but I seen a endocrinologist in Milwaukee and he said he doesn't think I have one even though I tested positive after I told him my Dr put me on pain meds because it's hard to walk and I've been having liver pain and duodenum pain I had a stent in there but it's gone and missing now? So.. I don't know do you know your urine levels how high they are? They told me usually people are in the 100's when they find it. I just had my thyroid out with 2 parathyroid tumors but not N.E.T.s so.... Tell me more about what you know and how you found out your numbers etc? I'm new to this only a month in started with bladder spasms, and testicle hydroceles, and pain in prostate?! You?

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Replies to "I just learned I have a prostate neuroendocrine tumor I did the urine test first by..."
Teresa, Volunteer Mentor | @hopeful33250 | Oct 3, 2022

Hello @nathanb1979

Welcome to the NETs discussion on Mayo Connect. I am sorry to hear of your recent diagnosis. It certainly is a difficult diagnosis to get your head around, isn't it?

As with any new NETs diagnosis, I recommend that you have a consult with an oncologist who is a NETs specialist. As this is a unique form of cancer, not every oncologist is equipped to provide the best testing and follow up care as is needed.

With that said, Mayo Clinic has some excellent NET specialists. If you are not close enough for an in-person visit, perhaps a video consult would be helpful. Here is the information for requesting an appointment, http://mayocl.in/1mtmR63.

Have you had a Gallium 68 scan? This type of scan is good at catching NETs, more so than regular CT scans. Here is some information that you might find helpful.
--68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
Regarding your urine test, was this the 24 hour urine test? Have you had other blood work done to test for NETs? I'm thinking of blood tests like Serotonin levels?

As neuroendocrine tumors seem to be a new diagnosis for you, I recommend that you educate yourself on this rare disorder. Education is a great way to be prepared for dealing with health issues such as this. The Carcinoid Cancer Foundation (CCF) is a good resource with information about NET specialists and the types of diagnostic tests, etc. Here is the CCF website,
--Carcinoid Cancer Foundation
https://www.carcinoid.org/
Here is some information from Mayo Clinic's website,
--Neuroendocrine Tumors
https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/symptoms-causes/syc-20354132
As you wait for your October 14 appointment, what is your most difficult symptom right now?

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