1. < Neuroendocrine Tumors (NETs)
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I'm newly diagnosed . . .small bowel NET at the ileocecal valve

Posted by taly @taly, 4 days ago

Hi, everyone. I was diagnosed on July 17 with small bowel NET at the ilealcecal valve. I had been having GI trouble for well over a year and someone encouraged me to get a colonoscopy, where it was found, biopsied, and labeled a well-defined Grade 1, Ki-67 <3%.

I have been accepted at Mayo Phx and will be traveling there for my Dotatate PET/CT on 8/6. I will see my surgeon oncologist, Dr. Wasif, for the sugery consult on 8/14.

Thank you, @tomrennie , for welcoming me so far. I'm wondering if my PET results will be on the portal and would that usually be within a day or two?

My cardiologist, who has started a workup on me, believes the NET may be functioning, as do I with many symptoms. From what I've read, if that's true it has likely spread to the liver.

I understand small bowel NETS in particular spread very early and easily, even at Grade 1, though perhaps only to the lymph nodes (and possibly not at all). In my case it seems likely more than that. Most of my reading/research has been on PubMed, but also places like Mayo, Cleveland Clinic, Stanford, etc.

Thank you all for sharing your experience, strength and hope on here!

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

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maeve115 | @maeve115 | 19 hours ago
In reply to @taly "@maeve115 Thank you. i really get the behavior not matching the reality which has been the..." + (show)
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@maeve115 Thank you. i really get the behavior not matching the reality which has been the case for years; not saying hardly anything and masking, masking. Not wanting to be seen as a whiner or a downer. Our talk will be tomorrow night. Yes, in it together. "A burden shared is a burden halved; a joy shared is a joy doubled."

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@talalmohammad I had not thought of it as masking or pretending when talking to them, because it does not seem intentional. With family I just get so enthused to see them that the adrenaline shoots up. Later the energy is depleted and a flush may happen. However I do recognize the masking with neighbors and acquaintances. It is a challenge for them to comprehend NETs and I look so good for my age that they cannot imagine a "cancer" that has gone on for years.. We can be seen as whiners or downers but the people I see with NETs are courageous life loving and life giving people who live with a complicated and sometimes symptom-filled disease. Thank You.. May we indeed feel our burden halved and our joy doubled as we fill in our adult sons and daughters. Will be thinking of you tonight.

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taly | @taly | 7 hours ago
In reply to @maeve115 "@talalmohammad I had not thought of it as masking or pretending when talking to them, because..." + (show)
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@talalmohammad I had not thought of it as masking or pretending when talking to them, because it does not seem intentional. With family I just get so enthused to see them that the adrenaline shoots up. Later the energy is depleted and a flush may happen. However I do recognize the masking with neighbors and acquaintances. It is a challenge for them to comprehend NETs and I look so good for my age that they cannot imagine a "cancer" that has gone on for years.. We can be seen as whiners or downers but the people I see with NETs are courageous life loving and life giving people who live with a complicated and sometimes symptom-filled disease. Thank You.. May we indeed feel our burden halved and our joy doubled as we fill in our adult sons and daughters. Will be thinking of you tonight.

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@maeve115 I agree about the people with NETs being courageous and wonderful people, as is so evident on here! I would NEVER think of the people here as whiners! I hope no one felt I was saying that - quite the opposite. And it's perfectly fine for people to discuss their symptoms or hard times. This forum is for support for those who need it. Please forgive me for how that sounded!

I'm referring to the period when I had no idea I had NETs, had never heard of NETs, and just had weird, unexplainable symptoms which I knew were deeply affecting me but had no way of explaining to others. I was afraid they would think I was a hypochondriac or something. So I really wasn't forthcoming to anyone, family or not about what I was going through. That's just how I did it and I'm not saying it was a good way to handle it. So glad to have the info to share with them now. Again, I apologize if anyone thought I was talking about people with NETs; I was talking about myself and not understanding what was wrong with me. Thank you and all for your support!

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