1. < Neuroendocrine Tumors (NETs)
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NET Stage 2 in Stomach

Posted by soonermimi @soonermimi, Jun 24 4:39pm

I was just diagnosed yesterday. Looking for information, and in particular from anyone with stomach NET. Mine is “well differentiated NET of stomach Grade 2. “ I will be having a wedge surgery after a 2nd endoscopy and an MRI.

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

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maeve115 | @maeve115 | Jun 28 7:39pm
In reply to @soonermimi "Thank you all for your support and advice! I will certainly consider an expert opinion. I..." + (show)
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Thank you all for your support and advice! I will certainly consider an expert opinion.

I feel weird about doing that since my doc is so confident everything is no big deal (not his words — my interpretation).

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@soonermimi
A second opinion is common practice and most oncologists are grateful for the added input, or at least the ones who are aware of the challenges. There is an old saying " The greater the arrogance the less competence". Your Doc may be very competent in his field but not in the Neuroendocrine tumors realm. We require a NET specialist who works/has a tumor board.
I needed to be brave and develop self advocacy. If one needs to be concerned about the feelings or reactions of the Doctor when seeking a second opinion, then that is a situation that needs remedying. I needed to get added support to come with me to an appointment.. Together we are learning to get the treatment that we absolutely require. In each other's corners.

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soonermimi | @soonermimi | Jun 28 8:14pm
In reply to @hopeful33250 "@soonermimi This sounds like a good plan! Will you let me know how the appointment scheduling..." + (show)
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@soonermimi
This sounds like a good plan! Will you let me know how the appointment scheduling goes?

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@hopeful33250 I will do that. Thanks’

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maeve115 | @maeve115 | 5 days ago
In reply to @soonermimi "I really appreciate the responses and advice. I am going to take your recommendations and contact..." + (show)
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I really appreciate the responses and advice. I am going to take your recommendations and contact Mayo Clinic. I actually have a dear friend who worked her whole career at Mayo in nursing and mental health work. She is going to call in for me on Monday and help me navigate the process! In fact, she was already researching before I even mentioned anything to her!

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@soonermimi Good News.. Good Work..

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soonermimi | @soonermimi | 5 days ago

I submitted the medical records to Mayo. They reviewed and recommended I continue with the treatment with local doctors. That gives me great comfort that I am on the right track and that this was caught at an early stage.

I have an MRI of the abdomen with and without contrast next.

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donnalb4 | @donnalb4 | 2 days ago
In reply to @soonermimi "@tomrennie, thank you for the welcome. No, is not but he did consult with an oncologist..." + (show)
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@tomrennie, thank you for the welcome. No, is not but he did consult with an oncologist and the surgeon who will do the wedge, who is an oncology surgeon. He had talked to them before I got the news. And we talked about possibly doing a laparoscopic wedge but I decided against it.

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@soonermimi Did you have a polyp and they removed it before being diagnosed?

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maeve115 | @maeve115 | 1 day ago
In reply to @soonermimi "I submitted the medical records to Mayo. They reviewed and recommended I continue with the treatment..." + (show)
Profile picture for soonermimi @soonermimi

I submitted the medical records to Mayo. They reviewed and recommended I continue with the treatment with local doctors. That gives me great comfort that I am on the right track and that this was caught at an early stage.

I have an MRI of the abdomen with and without contrast next.

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@soonermimi
Thank You for letting us know.. This is reassuring.!!

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soonermimi | @soonermimi | 1 day ago
In reply to @donnalb4 "@soonermimi Did you have a polyp and they removed it before being diagnosed?" + (show)
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@soonermimi Did you have a polyp and they removed it before being diagnosed?

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@donnalb4 Yes I had a polyp removed and biopsied during an endoscopy. And I have had a second endoscopy already to ink where the polyp was so the surgeon can easily find the spot.

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donnalb4 | @donnalb4 | 1 day ago

What is the next thing the Dr will do now ? They found another cancerous NET polyp in my stomach and removed it. Not sure what they will do next!

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soonermimi | @soonermimi | 5 hours ago
In reply to @donnalb4 "What is the next thing the Dr will do now ? They found another cancerous NET..." + (show)
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What is the next thing the Dr will do now ? They found another cancerous NET polyp in my stomach and removed it. Not sure what they will do next!

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@donnalb4 next I will get an MRI of the abdomen to see if it has spread to the pancreas or other organs. The plan right now is to then do a wedge surgery on the stomach where the polyp was removed. That’s all I know for now. Praying for a clear MRI.
What is your story on your diagnosis?

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Mentor
Turkey, Volunteer Mentor | @tomrennie | 1 hour ago
In reply to @donnalb4 "What is the next thing the Dr will do now ? They found another cancerous NET..." + (show)
Profile picture for donnalb4 @donnalb4

What is the next thing the Dr will do now ? They found another cancerous NET polyp in my stomach and removed it. Not sure what they will do next!

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@donnalb4 Hi and welcome to Mayo Connect. Did you have any symptoms that lead to the search that found the polyp? What procedure found it?

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