1. < Neuroendocrine Tumors (NETs)

Type 1 Neuroendocrine Tumor with no risk: What should I ask doctor?

Posted by racb @racb, Sep 3, 2023

Hello,
Yesterday my EGD biopsies revealed the Atrophic Gastritis diagnosis that I already knew about. The polyp that the doctor biopsied in my stomach was benign. According to the doctor, based on guidelines, having one of these benign polyps (called a Type 1 Neuroendocrine Tumor) has no risk. However, in order to be super certain, the doctor recommends repeating my endoscopy at this time to make sure we resect everying and repeating an EGD in 1 year. Is anything that I should be asking the doctor? With all your experiences, what are the steps/things can be recommended for me? I appreciate all your support!

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

racb | @racb | Sep 19, 2023
In reply to @hopeful33250 "Hello @racb I see that I am coming in a bit late to this discussion you..." + (show)
@hopeful33250

Hello @racb

I see that I am coming in a bit late to this discussion you started. I hope that your endoscopy on Thursday provides you with good feedback. In addition, to the questions that @colleenyoung suggested, I would also ask the doctor to let you know the Ki-67 value of the tumor.

Here is some information about the Ki-67 values and the information that it provides, https://www.cancer.net/cancer-types/neuroendocrine-tumors/grades.

It is my understanding that even if the Ki67 value was not tested for on the original tumor, it can be tested after the fact on the slides when the tumor was removed.

I look forward to hearing from you again. When it's convenient for you, will you post after the endoscopy?

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Thank you for the information Teresa!

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racb | @racb | Sep 19, 2023
In reply to @stevestenberg31 "Hi i am 55 male. I had colonoscopy 10/1/2021 and was told polyps were benign and..." + (show)
@stevestenberg31

Hi i am 55 male. I had colonoscopy 10/1/2021 and was told polyps were benign and to come back in 8yrs. Nov 21, 2022 i had an ultrasound for stomach bloating and pain. By Jan2023 they had determined it was a NET. My PETScan 1/19/23 showed NETS in SI, stomach wall and liver. If i were you I would demand an MRI to determine if your NETS are anywhere else. Earlier is better. Note Steve Jobs.

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Thank you Steve!

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tinerobison | @tinerobison | Sep 20, 2023
In reply to @michellesimpson10 "Definitely keep your follow up. If you feel it’s something you need to be seen for..." + (show)
@michellesimpson10

Definitely keep your follow up. If you feel it’s something you need to be seen for or more serious then ask them to move up the date. Please see a NET specialist. I had one dr strongly feel my NET tumor in the tail of my pancreas was a splenule. I’m glad I listened to my intuition and kept pushing the doctors for more than a best guess. I had a gastroenterologist who also felt it was a NET and not the splenule. She found me a NET specialist with Texas Oncology and I had surgery in May to remove 1/3 of pancreas (NET was in the tail) and my spleen. I’m recovering well and so glad I pushed forward.
My love and prayers are with you 💜💜💜💜

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Hi Michelle! We did not have any resolution at Mayo last month and are very discouraged. Every time I read more of your experiences and story it sounds so much like my husband’s. They were trying to tell him his could be a splenule as well. Can you give the name of the doctor who finally found you answers we will fly anywhere to get the help he needs. He feels sick everyday and no one seems to want to believe his symptoms and help him! If you would rather just email me my email is tinerobison@comcast.net.

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c2pricorn66 | @c2pricorn66 | Sep 20, 2023
In reply to @stevestenberg31 "Hi i am 55 male. I had colonoscopy 10/1/2021 and was told polyps were benign and..." + (show)
@stevestenberg31

Hi i am 55 male. I had colonoscopy 10/1/2021 and was told polyps were benign and to come back in 8yrs. Nov 21, 2022 i had an ultrasound for stomach bloating and pain. By Jan2023 they had determined it was a NET. My PETScan 1/19/23 showed NETS in SI, stomach wall and liver. If i were you I would demand an MRI to determine if your NETS are anywhere else. Earlier is better. Note Steve Jobs.

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Sometimes MRI doesnt catch it but PET Scan will definitely find em. Hope that help.
Lina

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1 reply
stevestenberg31 | @stevestenberg31 | Sep 20, 2023
In reply to @c2pricorn66 "Sometimes MRI doesnt catch it but PET Scan will definitely find em. Hope that help. Lina" + (show)
@c2pricorn66

Sometimes MRI doesnt catch it but PET Scan will definitely find em. Hope that help.
Lina

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Good point but for sure Type 1 doesn't mean it's not spreading.

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1 reply
c2pricorn66 | @c2pricorn66 | Sep 20, 2023
In reply to @stevestenberg31 "Good point but for sure Type 1 doesn't mean it's not spreading." + (show)
@stevestenberg31

Good point but for sure Type 1 doesn't mean it's not spreading.

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That's right. It can be benign, encapsulated and non functioning like my hubby but we don't want to wait until it become malignant, functional and metastasis. So he's had lap panc/spleen removed 6/9 so he is doing well came home D8 post with a drain.

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1 reply
tinerobison | @tinerobison | Sep 26, 2023

I am so frustrated to hear so many of you have had the option to have the tumors removed and we have been to 2 major hospitals and they won’t give that as an option for us, this is so frustrating! Has anyone experienced the waiting game and continue to not feel well during that time? My husband can’t even enjoy life and is in pain every time he eats!

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2 replies
Turkey | @tomrennie | Sep 26, 2023
In reply to @tinerobison "I am so frustrated to hear so many of you have had the option to have..." + (show)
@tinerobison

I am so frustrated to hear so many of you have had the option to have the tumors removed and we have been to 2 major hospitals and they won’t give that as an option for us, this is so frustrating! Has anyone experienced the waiting game and continue to not feel well during that time? My husband can’t even enjoy life and is in pain every time he eats!

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Why do you want surgery so much?

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1 reply
Turkey | @tomrennie | Sep 26, 2023
In reply to @tomrennie "Why do you want surgery so much?" + (show)
@tomrennie

Why do you want surgery so much?

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I don't know your story... sorry. I got progressively sicker for over 3 years before finally being diagnosed. I had a pnet that spread to my liver. Surgery wasn't an option for me. I have had enough surgeries so I was happy to avoid it. I have been on CAPTEM chemo for over a year. Every thing is shrinking. I am very fortunate.

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1 reply
tinerobison | @tinerobison | Sep 27, 2023
In reply to @tomrennie "I don't know your story... sorry. I got progressively sicker for over 3 years before finally..." + (show)
@tomrennie

I don't know your story... sorry. I got progressively sicker for over 3 years before finally being diagnosed. I had a pnet that spread to my liver. Surgery wasn't an option for me. I have had enough surgeries so I was happy to avoid it. I have been on CAPTEM chemo for over a year. Every thing is shrinking. I am very fortunate.

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What were your symptoms over the 3 years?

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