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NETs: Scheduled for small intestine resection: What to expect?

Neuroendocrine Tumors (NETs) | Last Active: Oct 12, 2023 | Replies (85)
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@dbamos1945

Your experience is so personally familiar to me. I am sorry you are going through this emotional pain. I just want to add that no matter the testing results that the Oncologist has many options for treatment and some are stabilizing the tumor and restricting ability to metastasize. I am telling you that there is reason to HOPE!
I trust this will relieve some of the anxiety we all experience with the unknown. Self -talk must remain positive to control panic.

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Replies to "Your experience is so personally familiar to me. I am sorry you are going through this..."
phyllisden | @phyllisden | Jun 26, 2023

Dbamos1945 and bubbles 2023 - Dbamos, your response struck a cord with me as your response to bubbles2023 was so like my thinking and my experience.
I passed my 5 year survivorship in March this year (diagnosed in 2018 with Stage 4 carcinoid of the small intestine that had spread smaller lesions throughout my body (no other major organs except my stomach). I started Octreotide shots right away, then had another blockage in July 2019 - this time in my large intestine. So overall lost 21" of my colon and small intestine and they removed my appendix as a precautionary measure. Thanks to the pandemic, had to wait a year to start PRRT at Mayo until April 2021, ending in October. Had my first followup scan in March, 2022 - everything stable (no new growth). Had another one two weeks ago, stable - no new growth! My oncologist is quite happy. I just get my monthly shots, labs and see doc every 3 months and live my life as if I have a chronic illness that I manage.
I recently attended the LACENETS Virtual conference and was surprised and pleased to hear about all the clinical trials and research going on. Having a positive attitude will be of great benefit, being educated about this situation in order to be an active and vocal member of the treatment team, and accept that this is life right now.
Oh, and find what works as far as stress management. If I get stressed out, it goes right to my stomach so I work hard to keep control of that.
Best of luck. And please stay in touch.

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