Έχεις συμπτώματα που να ενοχλούν την ποιότητα ζωής σου; εγώ εγχειρίστηκα στο στομάχι και μετά 3 χρόνια που εμφανίστηκε και στο πάγκρεας μου δώσανε μια ένεση Somatuline Autogel 120mg να την κάνω δια βίου μια φορά τον μήνα για να μη μεγαλώσουν οι όγκοι.
Translation:
Do you have symptoms that are disturbing your quality of life? I had surgery on my stomach and 3 years later, when it appeared in my pancreas, they gave me a Somatuline Autogel 120mg injection to take once a month for life to keep the tumors from growing.
Luckily my quality of life hasn't changed much except for occasional stomach pain and being tired a lot. So far this year I've had 4 NETs removed from my stomach. I have an EGD every 3 months because of the number of polyps I have in my stomach. The GI lab at Vanderbilt does EGD with an ultrasound and have found tumors that way. My oncologist at Vanderbilt thinks the NETs will stay in the stomach (hope he's right). I'm not on medication yet due to my tumors being small.
3 χρόνια έχω κάνει εγχείριση ΝΕΤ στο στομάχι. Είναι ανενεργός. Εχει παρουσιαστεί τώρα και στο πάγκρεας,αλλά είναι πολύ μικρός. Ο γιατρός μου συνέστησε μια ένεση σοματουλίνης κάθε μήνα δια βίου για να μη μεγαλώσει ο όγκος.
English translation
3 years ago I had NET surgery on the stomach. He is inactive. It has now also appeared in the pancreas, but it is very small. My doctor recommended a somatulin injection every month for life to keep the tumor from growing.
3 χρόνια έχω κάνει εγχείριση ΝΕΤ στο στομάχι. Είναι ανενεργός. Εχει παρουσιαστεί τώρα και στο πάγκρεας,αλλά είναι πολύ μικρός. Ο γιατρός μου συνέστησε μια ένεση σοματουλίνης κάθε μήνα δια βίου για να μη μεγαλώσει ο όγκος.
English translation
3 years ago I had NET surgery on the stomach. He is inactive. It has now also appeared in the pancreas, but it is very small. My doctor recommended a somatulin injection every month for life to keep the tumor from growing.
Yes, I have gastric NET caused by my autoimmune atrophic gastritis. One person commented on this site that this type of cancer is "esoteric," which made me laugh out loud. So true. It's been hellish even finding providers who've ever heard of this condition. NETs in general are rare enough, and mine, which is caused by my autoimmune issues, are even rarer. I've learned that many NPs and even doctors never bother to read lab reports or even look at my chart, and prefer to dismiss me and my symptoms. I was recently accused by an ignorant GI NP that I was "making up the diagnosis," because "there is no such thing as autoimmune atrophic gastritis."
Getting back to my NET, I was diagnosed in January 2024, and had malignant tumors removed during the upper endoscopy. I go in once a year to have more removed and biopsied. So far, everything has stayed in the stomach, and none has moved around. Or so they tell me (I've never gotten a scan), since the size of the tumors have been very small, under 1 cm.
Yeap, I have it
Detected on 2019,.
First teatment with Sandostatine, second reincidence with resection and third with radiotherapy (TrueBeam equipment)
Yes, I have gastric NET caused by my autoimmune atrophic gastritis. One person commented on this site that this type of cancer is "esoteric," which made me laugh out loud. So true. It's been hellish even finding providers who've ever heard of this condition. NETs in general are rare enough, and mine, which is caused by my autoimmune issues, are even rarer. I've learned that many NPs and even doctors never bother to read lab reports or even look at my chart, and prefer to dismiss me and my symptoms. I was recently accused by an ignorant GI NP that I was "making up the diagnosis," because "there is no such thing as autoimmune atrophic gastritis."
Getting back to my NET, I was diagnosed in January 2024, and had malignant tumors removed during the upper endoscopy. I go in once a year to have more removed and biopsied. So far, everything has stayed in the stomach, and none has moved around. Or so they tell me (I've never gotten a scan), since the size of the tumors have been very small, under 1 cm.
So weird to hear of someone else having Autoimmune Atrophic Gastritis and nets in the stomach. My AAG has destroyed my stomach lining and nets have developed there. I also have sibo so it makes my case a rarity as well. Currently on the wait and watch program with monthly Octreotide shots, ga68 scans and endoscopy every 3 months. Searching for a solution to my insurance problem (Kaiser) to be able to see a net specialist out of network or change plans! It’s not enough to be filled with anxiety and sick then to have to fight insurance companies to get care!
So weird to hear of someone else having Autoimmune Atrophic Gastritis and nets in the stomach. My AAG has destroyed my stomach lining and nets have developed there. I also have sibo so it makes my case a rarity as well. Currently on the wait and watch program with monthly Octreotide shots, ga68 scans and endoscopy every 3 months. Searching for a solution to my insurance problem (Kaiser) to be able to see a net specialist out of network or change plans! It’s not enough to be filled with anxiety and sick then to have to fight insurance companies to get care!
It broke my heart to read what you're going through. It sounds as though Kaiser is doing all it can, but it *is* challenging to find specialists who know what they're talking about. After my Providence provider congratulated me for "having the best cancer that you can have, since it never metastasizes," then meeting someone who DID have metastatic NET, I switched my care to the UCSF NET Center.
UCSF is fine as far as procedures go, but I had a very discouraging visit with their GI NET NP last week who couldn't understand, or would not listen to my digestive symptoms, which as someone with SIBO, I'm sure you can relate to. I'm so tired of being talked down to by ignorant people, as I'm sure you are, too.
My heart goes out to you, and hope you find the care that you deserve. Please keep me posted.
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Luckily my quality of life hasn't changed much except for occasional stomach pain and being tired a lot. So far this year I've had 4 NETs removed from my stomach. I have an EGD every 3 months because of the number of polyps I have in my stomach. The GI lab at Vanderbilt does EGD with an ultrasound and have found tumors that way. My oncologist at Vanderbilt thinks the NETs will stay in the stomach (hope he's right). I'm not on medication yet due to my tumors being small.
3 χρόνια έχω κάνει εγχείριση ΝΕΤ στο στομάχι. Είναι ανενεργός. Εχει παρουσιαστεί τώρα και στο πάγκρεας,αλλά είναι πολύ μικρός. Ο γιατρός μου συνέστησε μια ένεση σοματουλίνης κάθε μήνα δια βίου για να μη μεγαλώσει ο όγκος.
English translation
3 years ago I had NET surgery on the stomach. He is inactive. It has now also appeared in the pancreas, but it is very small. My doctor recommended a somatulin injection every month for life to keep the tumor from growing.
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Yes, I have gastric NET caused by my autoimmune atrophic gastritis. One person commented on this site that this type of cancer is "esoteric," which made me laugh out loud. So true. It's been hellish even finding providers who've ever heard of this condition. NETs in general are rare enough, and mine, which is caused by my autoimmune issues, are even rarer. I've learned that many NPs and even doctors never bother to read lab reports or even look at my chart, and prefer to dismiss me and my symptoms. I was recently accused by an ignorant GI NP that I was "making up the diagnosis," because "there is no such thing as autoimmune atrophic gastritis."
Getting back to my NET, I was diagnosed in January 2024, and had malignant tumors removed during the upper endoscopy. I go in once a year to have more removed and biopsied. So far, everything has stayed in the stomach, and none has moved around. Or so they tell me (I've never gotten a scan), since the size of the tumors have been very small, under 1 cm.
Yeap, I have it
Detected on 2019,.
First teatment with Sandostatine, second reincidence with resection and third with radiotherapy (TrueBeam equipment)
View Translation
So weird to hear of someone else having Autoimmune Atrophic Gastritis and nets in the stomach. My AAG has destroyed my stomach lining and nets have developed there. I also have sibo so it makes my case a rarity as well. Currently on the wait and watch program with monthly Octreotide shots, ga68 scans and endoscopy every 3 months. Searching for a solution to my insurance problem (Kaiser) to be able to see a net specialist out of network or change plans! It’s not enough to be filled with anxiety and sick then to have to fight insurance companies to get care!
Hi pokeymama,
It broke my heart to read what you're going through. It sounds as though Kaiser is doing all it can, but it *is* challenging to find specialists who know what they're talking about. After my Providence provider congratulated me for "having the best cancer that you can have, since it never metastasizes," then meeting someone who DID have metastatic NET, I switched my care to the UCSF NET Center.
UCSF is fine as far as procedures go, but I had a very discouraging visit with their GI NET NP last week who couldn't understand, or would not listen to my digestive symptoms, which as someone with SIBO, I'm sure you can relate to. I'm so tired of being talked down to by ignorant people, as I'm sure you are, too.
My heart goes out to you, and hope you find the care that you deserve. Please keep me posted.