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

Posted by taly @taly, 3 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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taly | @taly | 16 hours ago
In reply to @samueljknapp "I had a recent total knee replacement with Mayo JAX. I had also been consulting with..." + (show)
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I had a recent total knee replacement with Mayo JAX. I had also been consulting with the Oncology Department as I had active Merkel Cell Carcinoma treatment going alongside immunotherapy treatment with the Veterans Hospital. In the kneecourse, I had MAYO MRIs and x-rays, and most times, I was able to see results from the first test before I had the second test. During my cancer treatment, my MAYO consultation notes were often posted before I got home after the office call. A PET-CT is a new one though, not experienced in that. I pray you have a similar satisfaction level as I had with the timeliness of reports.
As @tomrennie says above, the MAYO patient portal is very cool and will explain terms. I sometimes would copy the whole radiology report and drop it into a duckduckgo AI browser (a bit more private than google or other browsers), and it would actually "translate" the whole thing to an understandable level. Of course, recognize that some of these AI tools 'hallucinate' or get things flat out wrong, so the conversation with your doc is critical.
Please know my family and I pray for all of our patients here and know this is a good spot for support!

Sam K

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@samueljknapp Thank you, Sam. I would like to have the week to digest the results before going to see the surgeon and getting the real scoop. It will be helpful in formulating questions.

You and others here are in my prayers and heart as well. <3

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