1. < Neuroendocrine Tumors (NETs)
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Mentor

Welcome to the NETs Group! Come say hi.

Posted by Teresa, Volunteer Mentor @hopeful33250, Jan 20, 2017

Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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ce1b | @ce1b | Oct 22, 2022
In reply to @newbienet "Hi @ce1b thank you for sharing with me. Did you get referred to that NET specialists..." + (show)
Profile picture for newbienet @newbienet

Hi @ce1b thank you for sharing with me. Did you get referred to that NET specialists through the VA? Right now, all I have a gastroentologist. His name is richard strong through the va. I don't see oncology until this friday coming up. And that will be my first oncology appointment. Just wondering if i should ask for a referral to see someone else...

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NuB
The VA sent me to a cancer clinic close to my home. I did not get to see a NET Dr. And from what I was finding the treatments didn't line up. My cancer is in my lung, and it has spread to my lymph node.
Smart money would print the questions you should ask from the Net Cancer website. Take that with you when you see the oncologist.
Your testing should include PET scan.. , brain scan, and biopsys on anything that lights up.
I also believe the VA has one of the hospitals doing NET studies. I'll try to find that link and forward it to you.
My second opinion is coming from a NET specialist at the Mayo Clinic.. Thankfully he is in my local area. I'll be seeing him on the 15th I think..

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mrrnet | @mrrnet | Oct 22, 2022
In reply to @hopeful33250 "Hello @mrrnet and welcome to Mayo Connect. I'm sorry to hear about your diagnosis of NET..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @mrrnet and welcome to Mayo Connect. I'm sorry to hear about your diagnosis of NET but glad to hear that you are getting your energy back after surgery. You mention your night sweats have decreased. Are you taking monthly injections to keep them controlled?

Do you have any follow-up appointments scheduled?

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My dr hasn’t put me on any meds or injections. I have to go every three months for tests and scans.

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newbienet | @newbienet | Oct 22, 2022
In reply to @ce1b "Hi, I'm a vet too being treated through the VA. What I have found is that..." + (show)
Profile picture for ce1b @ce1b

Hi, I'm a vet too being treated through the VA. What I have found is that the VA is limited as to their skills and knowledge when it comes to the treatment of NETs.
You are getting good advice from the mentors at this site. Knowledge is your best tool as you progress through your illness.
I have found a NETs specialist here in Phoenix, AZ that is involved in clinical trials. I now have an appointment with him for a second opinion on my treatment plan... My advice is to make sure you are speaking to a doctor that is “NETs” qualified when seek or decide on your treatment plan.
Good luck in your journey. Lower your stress, meditate a couple times a day, stay as physically fit as possible, and prepare yourself for the upcoming proposed treatments. Your body will thank you.

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Hi @ce1b. thank you for sharing with me. I don't know why my messages are posting here

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newbienet | @newbienet | Oct 22, 2022
In reply to @ce1b "Hi, I'm a vet too being treated through the VA. What I have found is that..." + (show)
Profile picture for ce1b @ce1b

Hi, I'm a vet too being treated through the VA. What I have found is that the VA is limited as to their skills and knowledge when it comes to the treatment of NETs.
You are getting good advice from the mentors at this site. Knowledge is your best tool as you progress through your illness.
I have found a NETs specialist here in Phoenix, AZ that is involved in clinical trials. I now have an appointment with him for a second opinion on my treatment plan... My advice is to make sure you are speaking to a doctor that is “NETs” qualified when seek or decide on your treatment plan.
Good luck in your journey. Lower your stress, meditate a couple times a day, stay as physically fit as possible, and prepare yourself for the upcoming proposed treatments. Your body will thank you.

Jump to this post

Hi @ce1b thank you for sharing with me. Did you get referred to that NET specialists through the VA? Right now, all I have a gastroentologist. His name is richard strong through the va. I don't see oncology until this friday coming up. And that will be my first oncology appointment. Just wondering if i should ask for a referral to see someone else...

REPLY
1 reply
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ogcen | @ogcen | Oct 22, 2022

Hello everyone. I have bilateral Pheochromocytoma's on both my adrenal glands. I live in Oregon. This has been a 3 year ordeal that recently got me a diagnosis about 4 months ago. I'm currently phenoybenzamine currently and am feeling about 60% better but it's a daily struggle. I'm feeling pretty low and I'm pretty sure this is not the worst. I am wondering if I need to be at a tertiary center with bilateral lesions. My doctor has mentioned it but has not pushed it. Anyone here with bilateral Pheos?

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ce1b | @ce1b | Oct 22, 2022
In reply to @newbienet "Hi, I'm new here, and I'm a wreck. I'm a 42 yr old male who had..." + (show)
Profile picture for newbienet @newbienet

Hi, I'm new here, and I'm a wreck. I'm a 42 yr old male who had an upper endoscopy done because my ferritin levels (iron stores) were at a 3.3 when it should be at least at a 40. Doctor performed endoscopy and found an abnormal mucosa in my gastric antrum. Did a biopsy on it, and didnreally get a clear answer on it. The doctor called it a well differentiated neuroendocrine with carcinoid syndrome. I'm having flushing in my face and ears, and loose stools for that come and go. Some tingling in the face, and a little bit of abdomen pain. I tried to look up online and put all this together and i just couldn't. I'm a veteran and have my insurance through the VA. My follow up appointment isn't until Nov 22nd which is more than a month away. From the stuff that I have read online, it seems like if i have carcinoid syndrome, this tumor is well advanced?? It's a scary thought. Is it possible that this tumor is not cancer? The doctor hasn't come straight out and said this is cancer, but could it be anything else? I still have bloodwork to do, a pet scan, and a 2r hour urinalysis, but I am worried and have no where else to turn. Can someone please help...

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Hi, I'm a vet too being treated through the VA. What I have found is that the VA is limited as to their skills and knowledge when it comes to the treatment of NETs.
You are getting good advice from the mentors at this site. Knowledge is your best tool as you progress through your illness.
I have found a NETs specialist here in Phoenix, AZ that is involved in clinical trials. I now have an appointment with him for a second opinion on my treatment plan... My advice is to make sure you are speaking to a doctor that is “NETs” qualified when seek or decide on your treatment plan.
Good luck in your journey. Lower your stress, meditate a couple times a day, stay as physically fit as possible, and prepare yourself for the upcoming proposed treatments. Your body will thank you.

REPLY
3 replies
Profile picture for Teresa, Volunteer Mentor
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 21, 2022

Hello @mrrnet and welcome to Mayo Connect. I'm sorry to hear about your diagnosis of NET but glad to hear that you are getting your energy back after surgery. You mention your night sweats have decreased. Are you taking monthly injections to keep them controlled?

Do you have any follow-up appointments scheduled?

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1 reply
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mrrnet | @mrrnet | Oct 21, 2022

Hello from Indiana. I was diagnosed in August with a NET in my intestine. Pet scan showed a possible spot on my liver. Had surgery in September for the intestine tumor removal. Surgeon couldn’t get the the spot on liver to do a biopsy. I’m starting to get some energy back. My night sweats have decreased since surgery. Has that been a symptom for anyone else?

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newbienet | @newbienet | Oct 21, 2022

Hi @amandajro I was wondering what happened to my post 😳. The last doctor I talked to was my gastroentologist. He was the one that gave me the results of my pathology report, calling it a neuroendocrine tumor with carcinoid syndrome. He said that other departments were supposed to reach out to me to start setting up other appointments, but no one has yet. This was on Wednesday, 2 days ago. I have a followup appointment with my gastroentologist on the 22nd of Nov.

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Amanda Roe | @amandajro | Oct 21, 2022
In reply to @newbienet "Hi, I'm new here, and I'm a wreck. I'm a 42 yr old male who had..." + (show)
Profile picture for newbienet @newbienet

Hi, I'm new here, and I'm a wreck. I'm a 42 yr old male who had an upper endoscopy done because my ferritin levels (iron stores) were at a 3.3 when it should be at least at a 40. Doctor performed endoscopy and found an abnormal mucosa in my gastric antrum. Did a biopsy on it, and didnreally get a clear answer on it. The doctor called it a well differentiated neuroendocrine with carcinoid syndrome. I'm having flushing in my face and ears, and loose stools for that come and go. Some tingling in the face, and a little bit of abdomen pain. I tried to look up online and put all this together and i just couldn't. I'm a veteran and have my insurance through the VA. My follow up appointment isn't until Nov 22nd which is more than a month away. From the stuff that I have read online, it seems like if i have carcinoid syndrome, this tumor is well advanced?? It's a scary thought. Is it possible that this tumor is not cancer? The doctor hasn't come straight out and said this is cancer, but could it be anything else? I still have bloodwork to do, a pet scan, and a 2r hour urinalysis, but I am worried and have no where else to turn. Can someone please help...

Jump to this post

Hello @newbienet and welcome to Mayo Clinic Connect. Let me start by saying that I am glad you have reached out for support. Learning bits and pieces of information at a time with an appointment a month out can be very trying, no doubt.

Before I go on, you will notice that I have moved your post into the welcome discussion on NETs so you can more easily meet others and get started connecting. While Connect isn't comprised of doctors who can confirm anything for you, you will meet others who have their own experiences that they can share with you, and you with them.

Members such as @hopeful33250 @lisaonthegoco and @tdylanbrowning have been recent contributors here and may be able to come in and share more with you.

When are your other appointments for bloodwork, pet scan, and urinalysis scheduled for?

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