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Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: Nov 29 1:22pm | Replies (429)

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@ptk1776

Re: "come say hi". Hi, I am new here. I had an appendiceal NET removed in 2020, via appendectomy followed by right hemicolectomy (the appendectomy surgeon said he was cutting through tumor in the appendix removal). Ultimately classified as stage 3, with spread to nearby colon and one lymph node. Lots of history, but the main thing that might help others is the lesson to tell all your doctors all your symptoms. I was having my ferritin levels monitored by my sleep doctor for treatment of restless legs syndrome, and mentioned to my gastroenterologist that my ferritin had dropped below the normal range, so she started looking for a GI tumor, and did not stop until she found one (upper endoscopy, pill-cam through small intestine, colonoscopy, CT scan). That was very lucky for me, since appendix tumors not found in appendectomies are typically not found before stage 4. The other lesson I learned, was to bring comfortable walking shoes to any hospitalization that requires lots of walking for recovery. Those hard floors make stockinged feet very sore! Final lesson: do not gloat over your siblings that you have lived 40 years longer without an appendectomy than they did. As for symptoms, I have not been given radiation or chemotherapy, so all my current symptoms relate to my hemicolectomy and the loss of my ileum. I had a bad set of blood clots 17 days after my hemicolectomy in my superior mesenteric vein, portal vein, and left portal vein that shut down my colon and liver, putting me back in the hospital for twice as long as the hemicolectomy. The left lobe of my liver atrophied, but after 1.5 years of Eliquis, the clots resolved and full liver function was restored.

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Replies to "Re: "come say hi". Hi, I am new here. I had an appendiceal NET removed in..."

Great tips, @ptk1776. Are you currently on treatment? May I ask, do you have an ileostomy?

Hi! You have an amazing Dr. would you be able to share the name? I was diagnosed with a 6cm appendix carcinoid tumor. Slow growing. First Dr. recommended right hemi also but second Dr. said that's old school and since my margins were good on my tumor that even with it being so large I shouldn't do right hemi. My dotatate scan was clear. However, I'm having worse symptoms than ever..especially bloating and severe pain on occasions when my intestines move. I've had this pain for about 20 years off and on and in different locations. It got better for about 10 years when I went off gluten (no more pain EVER), until now. I feel there's something we're missing but so far Drs don't seem worried. I'm 42 and possibly some of this is due to perimenopause. Interestingly I got my period 2 weeks early, immediately following my appendectomy. Since then, I've been bleeding sporadically, period comes every 3 weeks, etc.