Hello @bof
I had 3 tumors in my stomach 4 years ago, the treatment was resection and after that 18 Sandostatin shots (one each 4 weeks).
I don’t know the size of the tumors detected for you,… is it possible a resection before even think about a gastrectomy?
The first one was removed by resection.
One month ago removed another gastric net tumor by resection too.
After that, the NET “decided to move”, now I have it in a lymph node.
STOMACH NET!
Having a STOMACH NET is indeed an esoteric experience and different from the lung, pancreatic and liver NETs that we often read about. Please free to inbox me to speak directly about this journey! @bof6@lupita1407@bdhawkins@carolhelen1@phyllisden@tracey2520
The tumor which was embedded in the lining of my stomach was removed but the tissue around where the tumor was .. tested positive ..
You said you had a similar journey .. please share .. as I don't know what to expect. Thanks!!
I had 100 tumors in my stomach. Many were polyps, however 5 were biopsied and all were 5 cm and Grade 3 nets with KI-67 of 25 (well-differentiated). I was advised by MDAnderson that I would not survive the gastrectomy. Next endoscope showed all 100 were gone. Some pathologists said that they were infiltrating sub-mucosal area and pancreas and lymph nodes. No treatment, just waiting. All on 2 different tumor boards said that they had never seen any presentation like mine so could offer no help. Caris reviewed my tumors and found no medication to help.Does anyone have any suggestions or ideas?
Yes all went away. However that is bad news not good. Once you have nets by their very nature they can never go away. If indolent they may stay the same size but move. In my case they are aggresive . But probably have gone to pancreas and lymph nodes. Diet is the same,but I did stop taking PPI'S.Carol
Hello @bof
I had 3 tumors in my stomach 4 years ago, the treatment was resection and after that 18 Sandostatin shots (one each 4 weeks).
I don’t know the size of the tumors detected for you,… is it possible a resection before even think about a gastrectomy?
My whole stomach was involved so a partial would not work. The surgeons all said I would not survive gastrectomy as I have too many co-morbidities. Mine were all 5 + cm. but margins were not clear. Bless you on your journey,Carol
Είμαι 68 ετώ γυναίκα.Πριν 3 χρόνια μου αφαιρέθηκε νευροενδοκρινικός όγκος στο στομάχι. Ο όγκος αυτός ήταν χαμηλής επεκτατικότητας. Πριν 8 μήνες η ενδοσκόπηση στομάχου έδειξε στο πάγκρεας πολύ μικρό όγκο ,σαν "αλατοπίπερο" νευροενδοκρινικό όγκο καθώς επίσης και στους λεμφαδένες. Οι όγκοι δεν είναι λειτουργικοί δεν έχω καμμία ενόχληση. Θα πρέπει να ξανακάνω εγχείριση; ποιό είναι το προσδόκιμο ζωής μου;
English translation (from Greek) https://translate.google.com/
I am a 68 year old woman. 3 years ago I had a neuroendocrine tumor removed from my stomach. This tumor was of low extensibility. 8 months ago, a stomach endoscopy showed a very small tumor in the pancreas, like a "salt and pepper" neuroendocrine tumor, as well as in the lymph nodes. The tumors are not functional and I have no discomfort. Should I have another operation? What is my life expectancy?
Είμαι 68 ετώ γυναίκα.Πριν 3 χρόνια μου αφαιρέθηκε νευροενδοκρινικός όγκος στο στομάχι. Ο όγκος αυτός ήταν χαμηλής επεκτατικότητας. Πριν 8 μήνες η ενδοσκόπηση στομάχου έδειξε στο πάγκρεας πολύ μικρό όγκο ,σαν "αλατοπίπερο" νευροενδοκρινικό όγκο καθώς επίσης και στους λεμφαδένες. Οι όγκοι δεν είναι λειτουργικοί δεν έχω καμμία ενόχληση. Θα πρέπει να ξανακάνω εγχείριση; ποιό είναι το προσδόκιμο ζωής μου;
English translation (from Greek) https://translate.google.com/
I am a 68 year old woman. 3 years ago I had a neuroendocrine tumor removed from my stomach. This tumor was of low extensibility. 8 months ago, a stomach endoscopy showed a very small tumor in the pancreas, like a "salt and pepper" neuroendocrine tumor, as well as in the lymph nodes. The tumors are not functional and I have no discomfort. Should I have another operation? What is my life expectancy?
To help you connect with other members who have experience with neuroendocrine tumors of the stomach, I moved your questions to this existing discussion:
In January I was diagnosed with NETs in my stomach. My GI doctor said I had 90 to 100 polyps in the stomach and some are NETs. My GI doctor and oncologists wants me to have my stomach removed but so far I have not approved the surgery. My Endocrinologist wants to start me on Octreotide injections which I hope to begin in a week or so.
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.
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Hi .. I will find out Tuesday!!
Thanks!
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1 ReactionUpdated: NET is back.
The first one was removed by resection.
One month ago removed another gastric net tumor by resection too.
After that, the NET “decided to move”, now I have it in a lymph node.
It’s very annoying 😩
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NET is back after having surgery one month ago?🤔🤔🤔
The tumor which was embedded in the lining of my stomach was removed but the tissue around where the tumor was .. tested positive ..
You said you had a similar journey .. please share .. as I don't know what to expect. Thanks!!
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2 ReactionsThis is confusing. Did all your stomach NETS go away on there own? What does your diet look like? How old are you? What did you do differently?
Yes all went away. However that is bad news not good. Once you have nets by their very nature they can never go away. If indolent they may stay the same size but move. In my case they are aggresive . But probably have gone to pancreas and lymph nodes. Diet is the same,but I did stop taking PPI'S.Carol
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2 ReactionsMy whole stomach was involved so a partial would not work. The surgeons all said I would not survive gastrectomy as I have too many co-morbidities. Mine were all 5 + cm. but margins were not clear. Bless you on your journey,Carol
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2 ReactionsΕίμαι 68 ετώ γυναίκα.Πριν 3 χρόνια μου αφαιρέθηκε νευροενδοκρινικός όγκος στο στομάχι. Ο όγκος αυτός ήταν χαμηλής επεκτατικότητας. Πριν 8 μήνες η ενδοσκόπηση στομάχου έδειξε στο πάγκρεας πολύ μικρό όγκο ,σαν "αλατοπίπερο" νευροενδοκρινικό όγκο καθώς επίσης και στους λεμφαδένες. Οι όγκοι δεν είναι λειτουργικοί δεν έχω καμμία ενόχληση. Θα πρέπει να ξανακάνω εγχείριση; ποιό είναι το προσδόκιμο ζωής μου;
English translation (from Greek) https://translate.google.com/
I am a 68 year old woman. 3 years ago I had a neuroendocrine tumor removed from my stomach. This tumor was of low extensibility. 8 months ago, a stomach endoscopy showed a very small tumor in the pancreas, like a "salt and pepper" neuroendocrine tumor, as well as in the lymph nodes. The tumors are not functional and I have no discomfort. Should I have another operation? What is my life expectancy?
Welcome, @dinitsa56. I used Google translate https://translate.google.com/ to translate from Greek to English.
To help you connect with other members who have experience with neuroendocrine tumors of the stomach, I moved your questions to this existing discussion:
- Anyone have a stomach NET?
https://connect.mayoclinic.org/discussion/anyone-have-a-stomach-net/
I see that a new non-functioning tumor was recently found in your pancreas. As similar discussion can be found here:
- Pancreatic NF-NET stable since 2005 - surgery or not?
https://connect.mayoclinic.org/discussion/pancreatic-nf-net-stable-since-2005-surgery-or-not/
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1 ReactionΈχεις 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.