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I'm newly diagnosed . . .small bowel NET at the ileocecal valve
Neuroendocrine Tumors (NETs) | Last Active: Aug 11 6:59pm | Replies (43)Comment receiving replies
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!
Replies to "@maeve115 I so agree with the quote you posted! Who knows how long I've had NETs......"
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@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.