1. < Neuroendocrine Tumors (NETs)
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.

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?

REPLY
2 replies
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)
@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
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)
@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. I don't know why my messages are posting here

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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)
@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?

Jump to this post

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

REPLY
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)
@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...

Jump to this post

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..

REPLY
1 reply
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)
@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

@ce1b do you also have carcinoid syndrome?

REPLY
1 reply
james8117 | @james8117 | Oct 23, 2022

Question… I am having surgery the first week of November to remove roughly 12 inches of my lower section of the small intestine and two lymph notes. I was diagnosed with a dozen or so small carcinoid tumors about a month ago, I have never had any side effects or symptoms. My question is has anybody had this surgery laparoscopically or a large incision, what was your time in hospital, blood in stool, pain level and the first two weeks what should I expect.
When could you function alone and also drive. Thank you

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3 replies
ce1b | @ce1b | Oct 23, 2022
In reply to @newbienet "@ce1b do you also have carcinoid syndrome?" + (show)
@newbienet

@ce1b do you also have carcinoid syndrome?

Jump to this post

NuB.. No I don't, but I have but other problems that seem to be happening to by body. I'm sure there will be more as cancer grows.
Everything I've read says that surgery is the gold standard for removing the NETs tumors or for relieve of the carconoid syndrome.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 23, 2022
In reply to @ce1b "NuB The VA sent me to a cancer clinic close to my home. I did not..." + (show)
@ce1b

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..

Jump to this post

Hello @ce1b

I would be very interested in learning about the VA facility that is doing NETs studies. Will you please post the information when you find it?

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 23, 2022
In reply to @ogcen "Hello everyone. I have bilateral Pheochromocytoma's on both my adrenal glands. I live in Oregon. This..." + (show)
@ogcen

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?

Jump to this post

Hello @ogcen and welcome to Mayo Connect. I can certainly understand your wish to be at a cancer center that excels in treating this rare disorder. Since your doctor has suggested it have you considered asking for a referral? For any rare diagnosis, it is always wise to be seen in a medical facility where they specialize in treating that disorder.

For your information, here is a link to an article about this from Mayo Clinic's website:
--Pheochromocytoma
https://www.mayoclinic.org/diseases-conditions/pheochromocytoma/symptoms-causes/syc-20355367

You say that you are feeling 60% better with your current treatment. What symptoms are the most difficult for you right now?

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