1. < Neuroendocrine Tumors (NETs)

GI NET attached to pancreas supposedly non-producing

Posted by ant12 @ant12, Feb 5 1:07am

I had surgery to remove 3 nets from my bowel in September 2023
One was attached to my pancreas
The primary was in my illeum and the surgeon performed a right hemicolectomy with 23 lymph nodes removed.
5 of the nodes had cancer present.
The surgeon claimed to have removed it all and now I’m so disappointed that he missed this one.
Last week I had a Petscan 3 months after surgery , which revealed a golf ball sized net imbedded into my pancreas. It can’t be removed as it is too near to my mesinteric artery
Comparing the most recent Petscan to the last showed the tumor was present in September.
I’ve continued to have loose bowel motions with up to a dozen motions per day, which is apparently due to the tumour pushing on my bowel.
My oncologist continues to tell me I don’t have carcinoid syndrome and I’ve had so many blood tests in the last 6 months that I no longer feel the needles. A good thing I suppose.
All my blood tests are otherwise normal and no diabetes
I’m about to start monthly injections of lanreotide to control the tumour and any new ones, as it’s in my lymph system.
I’ve had what I assumed was hypertension, since last June
I couldn’t walk far, would collapse on standing if sitting, dry skin, couldn’t sleep, loose bowels.
My weight would increase by 5 kilos in days and then drop back within a few days. I didn’t experience swelling in legs.

I’ve was put on beta blockers and blood pressure meds with small results and now wonder how much was attributed to the nets that are not active. !
I’ve recently found I’m having a hypertension like episode after drinking a cold beer or eating something sweet like watermelon.
It seems to last an hour or so before easing. At times I take an antihistamine which seems to help.
I’m reading here about hypoglycaemia, pancreas dumping insulin and wonder if the tumour is causing it
I have elevated seratonin and my oncologist has me doing another urine test with 3 days of fasting.
I’m gaining weight but I remain active and I’m hoping that the lanreotide might help.
From what I’m reading here it seems the States have much more aggressive treatments. Here in Australia I’m told chemo won’t work and that radiology therapy is a last resort.
Very few clinical trials here except in Melbourne. I can’t believe how more knowledgeable and advanced treatments are available overseas.

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 5 10:28am

Hello @ant12,

Welcome to the NETs support group on Mayo Connect.
I have requested that your post be moved to another discussion of members who have NETs on the pancreas. As you read the posts of these members, I think you will find some helpful information.

Regarding your medical treatment in Australia, I'm providing you with a link of NETs specialists worldwide. Here is the link, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

After all of the U.S. states are listed, you will find a specialist in Australia. As general oncologists do not always have special training in this rare form of cancer, it might be advisable to have a consult with a NET specialist in Australia.

Will you keep in touch and let me know how you are doing?

REPLY
1 reply
ant12 | @ant12 | Feb 5 1:30pm
In reply to @hopeful33250 "Hello @ant12, Welcome to the NETs support group on Mayo Connect. I have requested that your..." + (show)
@hopeful33250

Hello @ant12,

Welcome to the NETs support group on Mayo Connect.
I have requested that your post be moved to another discussion of members who have NETs on the pancreas. As you read the posts of these members, I think you will find some helpful information.

Regarding your medical treatment in Australia, I'm providing you with a link of NETs specialists worldwide. Here is the link, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

After all of the U.S. states are listed, you will find a specialist in Australia. As general oncologists do not always have special training in this rare form of cancer, it might be advisable to have a consult with a NET specialist in Australia.

Will you keep in touch and let me know how you are doing?

Jump to this post

Thank you for your response and guidance.
My Doctor is in that list. He is an associate professor specialist in Nets.
Lucky to have him.
Even though my net is now on the pancreas they still call it a GI net here.
I will check out that forum.
Thanks

REPLY
1 reply
jennywren8 | @jennywren8 | Feb 5 2:26pm

Hello,
My dad was recently diagnosed with a GI NET. We live in the US . The primary tumor is 6cm in diameter and in/near/on his pancreas, and is also inoperable due to being all up in some important arteries. Mesinteric artery sounds familiar. His tumor was causing a big problem because it was oozing blood into the GI tract, resulting in life-threatening anemia/low iron (which caused symptoms that led to his diagnosis).

He had a 2-week course of radiation therapy targeting the tumor, and is now on a monthly lanreotide injection. The radiation won't likely shrink the tumor, but it will help keep it asleep. I think it was called for to help stop the internal bleeding, too. He just had surgery to have a stent put in a vein that the tumor was pushing on. That's all the treatment he will have for the foreseeable future.
His tumor has spread to the lymph system, liver, maybe a few other places. But it's slow growing and non-functional.

Sounds like chemotherapy is something that could be considered in the distance future if needed, but it's not part of the standard of care for the point he's at. My dad did a conference consult at the Mayo Clinic where there are some top NET experts, and they agreed with everything his oncologist had been doing to date (but also recommended getting the stent placed).

What I have gathered is that lanreotide is the front line treatment for inoperable GI NETs. It feels anticlimactic, but I'm grateful because as treatments go it's pretty low drama, low time commitment, and no side effects for him.

I don't know if there's any stent equivalent for the bowel, to stop your tumor from pushing on it. Sorry to hear about those symptoms, that sounds rough.

Good luck! Sounds like you have a good doctor. I hope there's something that can be done for your various symptoms.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 5 3:39pm
In reply to @jennywren8 "Hello, My dad was recently diagnosed with a GI NET. We live in the US ...." + (show)
@jennywren8

Hello,
My dad was recently diagnosed with a GI NET. We live in the US . The primary tumor is 6cm in diameter and in/near/on his pancreas, and is also inoperable due to being all up in some important arteries. Mesinteric artery sounds familiar. His tumor was causing a big problem because it was oozing blood into the GI tract, resulting in life-threatening anemia/low iron (which caused symptoms that led to his diagnosis).

He had a 2-week course of radiation therapy targeting the tumor, and is now on a monthly lanreotide injection. The radiation won't likely shrink the tumor, but it will help keep it asleep. I think it was called for to help stop the internal bleeding, too. He just had surgery to have a stent put in a vein that the tumor was pushing on. That's all the treatment he will have for the foreseeable future.
His tumor has spread to the lymph system, liver, maybe a few other places. But it's slow growing and non-functional.

Sounds like chemotherapy is something that could be considered in the distance future if needed, but it's not part of the standard of care for the point he's at. My dad did a conference consult at the Mayo Clinic where there are some top NET experts, and they agreed with everything his oncologist had been doing to date (but also recommended getting the stent placed).

What I have gathered is that lanreotide is the front line treatment for inoperable GI NETs. It feels anticlimactic, but I'm grateful because as treatments go it's pretty low drama, low time commitment, and no side effects for him.

I don't know if there's any stent equivalent for the bowel, to stop your tumor from pushing on it. Sorry to hear about those symptoms, that sounds rough.

Good luck! Sounds like you have a good doctor. I hope there's something that can be done for your various symptoms.

Jump to this post

Hello @jennywren8 and welcome to the NETs support group on Mayo Connect. I appreciate your response to @ant12, your dad's diagnosis sounds very similar to what @ant12 described. You provided some good background which might be helpful in understanding this rare disorder.

I am glad to hear that your dad had a consult with Mayo Clinic. How is he feeling since the radiation and starting the lanreotide injections? Has he had much weight loss or problems with his appetite?

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 5 3:53pm
In reply to @ant12 "Thank you for your response and guidance. My Doctor is in that list. He is an..." + (show)
@ant12

Thank you for your response and guidance.
My Doctor is in that list. He is an associate professor specialist in Nets.
Lucky to have him.
Even though my net is now on the pancreas they still call it a GI net here.
I will check out that forum.
Thanks

Jump to this post

Your post will be left in this discussion thread, @ant12. I would encourage you to look at some of the other NETs discussion groups.

I'm glad that your doctor is on the list of NET specialists. That is encouraging. Are there any foods that increase your symptoms?

REPLY
1 reply
ant12 | @ant12 | Feb 5 4:18pm
In reply to @jennywren8 "Hello, My dad was recently diagnosed with a GI NET. We live in the US ...." + (show)
@jennywren8

Hello,
My dad was recently diagnosed with a GI NET. We live in the US . The primary tumor is 6cm in diameter and in/near/on his pancreas, and is also inoperable due to being all up in some important arteries. Mesinteric artery sounds familiar. His tumor was causing a big problem because it was oozing blood into the GI tract, resulting in life-threatening anemia/low iron (which caused symptoms that led to his diagnosis).

He had a 2-week course of radiation therapy targeting the tumor, and is now on a monthly lanreotide injection. The radiation won't likely shrink the tumor, but it will help keep it asleep. I think it was called for to help stop the internal bleeding, too. He just had surgery to have a stent put in a vein that the tumor was pushing on. That's all the treatment he will have for the foreseeable future.
His tumor has spread to the lymph system, liver, maybe a few other places. But it's slow growing and non-functional.

Sounds like chemotherapy is something that could be considered in the distance future if needed, but it's not part of the standard of care for the point he's at. My dad did a conference consult at the Mayo Clinic where there are some top NET experts, and they agreed with everything his oncologist had been doing to date (but also recommended getting the stent placed).

What I have gathered is that lanreotide is the front line treatment for inoperable GI NETs. It feels anticlimactic, but I'm grateful because as treatments go it's pretty low drama, low time commitment, and no side effects for him.

I don't know if there's any stent equivalent for the bowel, to stop your tumor from pushing on it. Sorry to hear about those symptoms, that sounds rough.

Good luck! Sounds like you have a good doctor. I hope there's something that can be done for your various symptoms.

Jump to this post

Thank you for your post and give my regards to your Dad
Whilst I have a great oncologist I’m naturally questioning his treatment plan.
It’s been a roller coaster ride for a while. I was led to believe, by my surgeon, that I was clear of all net's, to be cast back in with this diagnosis 4 months later.
What confuses me is that I have symptoms attributable to the tumours but they are considered non functioning.
I’ll keep researching and fill myself with knowledge from sites like this.
Thanks

REPLY
ant12 | @ant12 | Feb 5 4:44pm
In reply to @hopeful33250 "Your post will be left in this discussion thread, @ant12. I would encourage you to look..." + (show)
@hopeful33250

Your post will be left in this discussion thread, @ant12. I would encourage you to look at some of the other NETs discussion groups.

I'm glad that your doctor is on the list of NET specialists. That is encouraging. Are there any foods that increase your symptoms?

Jump to this post

Sugary food seems to create a hyperactive reaction of sorts. But even a cold beer does. Possible insulin or glucose spike. GP appointment this week to test. No diabetes yet

I’m still eating most foods as the loose motions come either way. But coffee, in particular expresso can cause an urgent need.
My search began in June 2023 when I had an operation on my hand.
My surgeon was concerned about my blood pressure which spiked during the operation.
I had a heart stress test and many blood tests in the following months.
I suffer from diverticulitis and was also having repeated bouts.
After the third bout in two months my doctor ordered a CT scan.
The radiologist mentioned a lump was a possible carcinoma.
It turns out that the bowel inflammation was caused by the carcinoma and inflammation in my appendix.
I had a colonoscopy in April 2023 that didn’t see anything.
Blood tests were normal
A urine analysis showed elevated seratonin

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 6 8:38am
In reply to @ant12 "Sugary food seems to create a hyperactive reaction of sorts. But even a cold beer does...." + (show)
@ant12

Sugary food seems to create a hyperactive reaction of sorts. But even a cold beer does. Possible insulin or glucose spike. GP appointment this week to test. No diabetes yet

I’m still eating most foods as the loose motions come either way. But coffee, in particular expresso can cause an urgent need.
My search began in June 2023 when I had an operation on my hand.
My surgeon was concerned about my blood pressure which spiked during the operation.
I had a heart stress test and many blood tests in the following months.
I suffer from diverticulitis and was also having repeated bouts.
After the third bout in two months my doctor ordered a CT scan.
The radiologist mentioned a lump was a possible carcinoma.
It turns out that the bowel inflammation was caused by the carcinoma and inflammation in my appendix.
I had a colonoscopy in April 2023 that didn’t see anything.
Blood tests were normal
A urine analysis showed elevated seratonin

Jump to this post

@ant12,

It seems as if the CT scan led to the discovery of the NETs and that was a result of the diverticulitis. Is my understanding correct?

Given your reaction to sugars and high carb foods and drinks, you might consider asking for a glucose tolerance test to see how sugar affects your blood sugar. This type of test is best done in a well-controlled setting. Mine was done in a clinic where I was laying down during the entire testing period and I was given glucose to drink and then blood tests were drawn periodically.

Has this type of test been done already?

REPLY
ant12 | @ant12 | Feb 6 3:03pm

Hey
Yes the CT was ordered because of suspected diverticulitis.
But the net in my ilium was responsible for the bowel pain as it turned out.
I’m seeing my GP on Friday to discuss sugar reaction among other things.

REPLY
Please sign in or register to post a reply.