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Neuroendocrine Tumors (NETs) | Last Active: 14 hours ago | Replies (411)Comment receiving replies
Hi Teresa. I now know that I am NET. I didn't even know what that was , however I am new. I did the chemo last year and I will be starting the injections this week. But my NET is everywhere!! It is in 5 different organs/ or locations. And today I discovered that instead of one 5cm spot I now have 4 more in my liver. So as I read everybody's posts I realize that . But I feel very good and healthy. No side effects yet except that I get tired easier.
Replies to "Hi Teresa. I now know that I am NET. I didn't even know what that was..."
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Hello @sweet63,
Oh, I can so understand your concern! So many of us with a NET diagnosis have worries and concerns regarding having a diagnosis such as this and when there are multiple locations for the NETs it seems even more worrisome. I would like to introduce you to @patrick031621 who has had a NET diagnosis for 19 years now with multiple tumors in different areas. I hope that he will share some of his experiences with you. I would also like to invite @kim1965 and @gneiss50, to post with you. They have also had multiple NETs.
You might also find Mayo Clinic's NETs support group helpful to you. (It is not necessary to be a Mayo patient to attend this group.) Have you attended this group? It meets virtually, via Zoom, on the first Thursday of each month at 5:30 EST. Here you will meet with other NET patients who share their journey during the meeting. Look for information about the next meeting in the NETs discussion group. I'll be sure that you get the notification.
As I learn more about your journey with NETs, I'll connect you with other members who have a situation similar to yours. You mention that you had chemo last year. What type of chemo was it? Are the injections that you are starting this week Octreotide or something else?