Primary NET in intestinal lining w/ atrophic gastritis

Posted by theminster1 @theminster1, Aug 22 8:51am

Does anyone share this combination? Also, the Serotonin secreted by the tumor seems to be attracted to Emines (sp) in certain foods that result in severe gastric attacks. While my GI MD has prescribed a med that works; it is difficult to know when to take it. Is it an actual painful attack starting or simply a painful gastric moment that will pass?

Hello @theminster1 and welcome to Mayo Clinic Connect's discussion group on NETs. I'm always surprised at the variety of NET diagnosis that so many folks have. As you know, NETs is a rare diagnosis, and the disorder you mentioned, Autoimmune atrophic gastritis is also rare. I case you would like some more information on this diagnosis here is a link to information about it from the NIH website. Just click on the link and can you read more about diagnosis and treatment. https://rarediseases.info.nih.gov/diseases/10310/autoimmune-atrophic-gastritis.

Personally, I have had three NETs in the upper digestive tract. They have all been removed by surgery with no other treatment involved. Has your tumor been surgically removed as well?

If you are comfortable sharing more, could you share how long ago you were diagnosed with this? What were your primary symptoms and what diagnostic tests revealed this?

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Gastric carcinoid she were found in 2010 during a hysterectomy (surgery) when I was diagnosed with Stage 3b Uterine Cancer. I had been cancer free since 1987 when I was diagnosed with stage 2 Thyroid Cancer involving 3 lymph nodes. Since the 2010 surgery I have had 13 chemo treatments & 28 radiation treatments ( resulting in atrophic vaginitis). I was treated at UW Carbone Cancer Center, Vince Lombardi Cancer Center & Northwestern Cancer Center. I was released from UW Carbone Cancer Center in 2016. Returned for a “routine” EDG in June, 2017 & the GI Surgeon found a Primary NET in the intestinal lining. I researched specialists & with the help of an MD/ friend was referred to an NET Specialist at the Mayo Clinic in Phoenix. Dr. Sonbol. His follow up diagnosis is that it is a well differentiated NET. He set up a team including a GI Specialist who diagnosed the Atrophic Gastritis via another EDG. The Endocrinologist on the team found some residual Thyroid tissue & put me on a supplement. Calcium+magnesium + ?. I was A-symptomatic until June 2018. Then, abdominal pain & eventually diarrhea followed & chronic fatigue. I am on a two month visit in Wisconsin, USA. I had the most recent EDG done here & 2 polyps & 6 tissue sections removed. All carcinoid. He has prescribed Hypscyamine for the gastric attacks/ episodes to take as needed. I remain in the monitor & observe stage now repeating EDG’s at 6 month intervals & the NET Special annually. The next two will be performed at Mayo Hospital in Phoenix & the Clinic in Scottsdale. Stay well & safe.

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@theminster1

Gastric carcinoid she were found in 2010 during a hysterectomy (surgery) when I was diagnosed with Stage 3b Uterine Cancer. I had been cancer free since 1987 when I was diagnosed with stage 2 Thyroid Cancer involving 3 lymph nodes. Since the 2010 surgery I have had 13 chemo treatments & 28 radiation treatments ( resulting in atrophic vaginitis). I was treated at UW Carbone Cancer Center, Vince Lombardi Cancer Center & Northwestern Cancer Center. I was released from UW Carbone Cancer Center in 2016. Returned for a “routine” EDG in June, 2017 & the GI Surgeon found a Primary NET in the intestinal lining. I researched specialists & with the help of an MD/ friend was referred to an NET Specialist at the Mayo Clinic in Phoenix. Dr. Sonbol. His follow up diagnosis is that it is a well differentiated NET. He set up a team including a GI Specialist who diagnosed the Atrophic Gastritis via another EDG. The Endocrinologist on the team found some residual Thyroid tissue & put me on a supplement. Calcium+magnesium + ?. I was A-symptomatic until June 2018. Then, abdominal pain & eventually diarrhea followed & chronic fatigue. I am on a two month visit in Wisconsin, USA. I had the most recent EDG done here & 2 polyps & 6 tissue sections removed. All carcinoid. He has prescribed Hypscyamine for the gastric attacks/ episodes to take as needed. I remain in the monitor & observe stage now repeating EDG’s at 6 month intervals & the NET Special annually. The next two will be performed at Mayo Hospital in Phoenix & the Clinic in Scottsdale. Stay well & safe.

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I appreciate all of the information you provided, @theminster1. You have had varied cancer experiences. It sounds as if you are making wise decisions regarding researching doctors who can best treat this newest disorder and following up as needed. I admire your tenacity and diligence!
Is the medication you are taking helping you with the symptoms?

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@theminster1

Gastric carcinoid she were found in 2010 during a hysterectomy (surgery) when I was diagnosed with Stage 3b Uterine Cancer. I had been cancer free since 1987 when I was diagnosed with stage 2 Thyroid Cancer involving 3 lymph nodes. Since the 2010 surgery I have had 13 chemo treatments & 28 radiation treatments ( resulting in atrophic vaginitis). I was treated at UW Carbone Cancer Center, Vince Lombardi Cancer Center & Northwestern Cancer Center. I was released from UW Carbone Cancer Center in 2016. Returned for a “routine” EDG in June, 2017 & the GI Surgeon found a Primary NET in the intestinal lining. I researched specialists & with the help of an MD/ friend was referred to an NET Specialist at the Mayo Clinic in Phoenix. Dr. Sonbol. His follow up diagnosis is that it is a well differentiated NET. He set up a team including a GI Specialist who diagnosed the Atrophic Gastritis via another EDG. The Endocrinologist on the team found some residual Thyroid tissue & put me on a supplement. Calcium+magnesium + ?. I was A-symptomatic until June 2018. Then, abdominal pain & eventually diarrhea followed & chronic fatigue. I am on a two month visit in Wisconsin, USA. I had the most recent EDG done here & 2 polyps & 6 tissue sections removed. All carcinoid. He has prescribed Hypscyamine for the gastric attacks/ episodes to take as needed. I remain in the monitor & observe stage now repeating EDG’s at 6 month intervals & the NET Special annually. The next two will be performed at Mayo Hospital in Phoenix & the Clinic in Scottsdale. Stay well & safe.

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Hello @theminster1 .
I wanted to check in with you to say hello and see how you are doing. You last posted that you were prescribed a med to help with gastric attacks. Has this treatment been helpful to you?

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