I'm newly diagnosed . . .small bowel NET at the ileocecal valve

@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."

@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.

@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!

@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!

@taly
I absolutely liked what you said.. For with neighbors I have been concerned about not looking as if I had cancer and avoiding too much of neighborhood activities and expectations. So, rather than sorry your words deserve a thank you. And I also like your words "Hypochondriac or something". I had the same concern before and even after diagnosis. It is hard for people to understand that this is a like a chronic condition and even though we do not have chemo or recover or die from this we are sick and are indeed courageous. So thank you for your understanding.. Absolutely, I related and am grateful for you naming/explaining a common situation and reaction for us.

@maeve115 I have been on chemo for four years. My liver and pancreas were failing. My tumors and lesions were blocking veins from performing. If the chemo didn't work, I would be dead. NETs can and will kill you if not properly treated. It’s cancer.

@taly No apologies necessary. You were just sharing. I know exactly where you are coming from. How did yesterday go?

@tomrennie The scan went fine. Staff at Mayo are the best.

I was blown away by the results. Moderate uptake for the tumor at the ileocecal valve, where this was all first discovered. No uptake anywhere else. I could NOT believe it. After well over a year of the diarrhea, and other symptoms too. Were they all a coincidence? Or is it functioning there all by itself? I don't know. I will be getting Chromogranin A and 5-HIP whatever urine (confusing it with HiPAA) soon.

I realize this doesn't mean there aren't tiny tumors too small to show on the PET. And that staging probably won't occur until after surgery. And that I haven't heard from the doctor yet (in a week I meet with the surgical oncologist).

Still, I feel incredibly, ridiculously fortunate at this point in time. I wish very good fortune for all of you, too, in whatever way that might present itself!

@taly That is awesome news. You have to feel somewhat relieved? Staging for me happened during my oncology visit after my PET scan. That's also when I learned that my tumors were functional. My oncologist said functional means symptoms. So maybe your tumor is functional? The additional tests help complete the overall picture for your surgeon. You meet with the surgeon later on this week?

@taly That is awesome news. You have to feel somewhat relieved? Staging for me happened during my oncology visit after my PET scan. That's also when I learned that my tumors were functional. My oncologist said functional means symptoms. So maybe your tumor is functional? The additional tests help complete the overall picture for your surgeon. You meet with the surgeon later on this week?