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I'm newly diagnosed . . .small bowel NET at the ileocecal valve
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!
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@dadcue What do your doctors say about the elevated pancreatic polypeptide level?
@dadcue
What is SBNET? Are you seeing a NET specialist at Mayo? Recently diagnosed with pancreatic NET and Ilum NET and my head is spinning.
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2 Reactions@bonnerpb
Small bowel NET. My primary is in the ileum or lower part of my small intestine.
I'm seeing many doctors and my head is spinning because of that. All the doctors are part of the NET team of doctors so they all have different specialities. All the doctors point me to a NET specialist who I have also seen. I don't see anyone at Mayo. The NET specialist I see is highly regarded nationally at the University of Iowa so not that far from Mayo in Minnesota.
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2 Reactions@tomrennie
None of my doctors have said anything. I'm not sure who ordered the pancreatic polypeptide level or why it was ordered. A pancreatic polypeptide level isn't mentioned as a routine lab for every NET work-up. Maybe selectively for suspected pancreatic neuroendocrine tumors according to Dr. Google. As far as I know ... I'm not suspected to have a pancreatic NET.
I'm afraid to ask anyone about the level. Maybe it doesn't mean anything.
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3 Reactions@dadcue I suggest finding out who ordered it and why.
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4 Reactions@tomrennie
Have you had that level checked.? I'm only asking because you have a pancreatic NET. ... I think. My understanding is a pancreatic NET isn't the best type to have.
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2 Reactions@maeve115
I so agree with the quote you posted! Who knows how long I've had NETs... could have been 10 years or more before a CAT scan was performed for a totally different reason (a tumor in liver caught by 'accident'), lol. Currently, the quote is more-than-likely true in my case: CKD, initially diagnosed as 3A and has progressed to Stage 4.
When I've commented to my doctors I'll probably die from CKD and not NETs, they are now nodding and agreeing. NET in lymph node caused a stricture in my right ureter causing severe hydronephrosis - had stent placed, didn't tolerate that well at all, so moved on to a nephrostomy tube. Working great and little to no problems so far. Overall, my SBNET remains mostly "stable" (some tumors larger, many died, thanks to PRRT). The only indication that my NETs is progressing are minimal increases to some lab values, and follow-up visits will be scheduled every 4 months instead of every 6 (new development from June 2026).
Take care - I always enjoy reading your posts!
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3 Reactions@anon0995
Thank You for your reassuring response. Yes, I know that most die from something other than NETs, so that they die with rather than from. Me too. It is generally accepted by my Doctors that the time could be lengthened but I will be one of the fewer folks who will die with. The reality is that we will all experience a final transition sometime. Perhaps that is why our diagnosis can bring us to and awareness of appreciating profound daily moments often touched with poignancy, purpose and gratitude.
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3 Reactions@dadcue I do have a pnet that spread to my liver and bones. I probably have had my pancreatic polypeptide level checked, but I have no specific recollection of it. I have had so many blood tests, scans, endoscopies, others tests and procedures since my diagnosis four years ago. I don't remember everything. Nor do I care to. I also have other health issues. I have several ologists. If I have a question about a test result, and I don't have an appointment already scheduled with the ordering doctor, I message the doctor in the portal. Once my question is answered to my satisfaction, I move on. I don't need to remember the answer. I have it in writing to reference should I need to. I also write down all of my questions prior to and keep notes on every medical appointment that I have had and compare them to the doctor's notes in the portal. If there is any discrepancy, I again message the doctor. I have checks and balances in place to manage the testing/treatment process, so I am always in sync with my healthcare team. I believe focusing on the process gives me the best results without surprises. That allows me to live my best life without my healthcare consuming all of my thoughts and energy.
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4 Reactions@maeve115
Ooops. Mistake. Meant "Me too... from"
Same reaction: Perhaps that is why our diagnosis can bring us to and awareness of appreciating profound daily moments often touched with poignancy, purpose and gratitude.
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