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Teresa, Volunteer Mentor (@hopeful33250)

Welcome to the NETs Group! Come say hi.

Neuroendocrine Tumors (NETs) | Last Active: Sep 5 7:47am | Replies (383)

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Followup answer:
My invasive surgery (I’m a relatively healthy 80 year old man) was for a small bowel obstruction on July 1, 2022. It was “laparotomy general surgery” (large incision). The surgeon removed a well-well-differentiated neuroendocrine tumor with a 1.2 cm greatest dimension. Tumor was also present in 1 of 6 lymph nodes. He removed 19 cm & 5 cm segments of bowel in a resection of distal jejunum.
Staging: pT2, pN1, pMx. I came home on July 10. For 6-8 days at home I had night sweats and then they stopped. I have had no other symptoms since then, no diarrhea, weight loss, eating or sleeping problems and no pain. I feel fine other than some arthritic back pain that isn’t new. Twenty-five years ago I had prostate cancer and a radical prostatectomy. I have been cancer free since then and remember as a PCa support group president advising newly diagnosed PCa men to strongly consider second opinions concerning treatment options. Fortunately I took my own advice or I might currently be undergoing unnecessary Octreotide treatments. I appreciate the NET Group postings as I have read them since my diagnosis and learned a great deal about NET. It's a very important service about this uncommon cancer.

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Replies to "Followup answer: My invasive surgery (I’m a relatively healthy 80 year old man) was for a..."

I so appreciate your great narrative about your surgery and treatment for NETs. I'm also glad that you have found this forum helpful to you!

Yes, this rare form of cancer certainly creates a desire to know more about the personal experiences of others and to learn more about this type of cancer which most people have never hear of before.

I so agree with you regarding the importance of a second opinion! Glad to hear that you took that advice.

Is it OK with you, if I tag you to offer encouragement to others facing similar surgery?

You mention Octreotide and ability to avoid so far. This has been recommended for me but cost prohibitive despite Medicare and supplemental insurance. Not too interested in giving myself 3 injections a day either. What made you want to avoid Octreotide?