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Neuroendocrine Tumor - no treatment plan method

Neuroendocrine Tumors (NETs) | Last Active: May 5 8:09am | Replies (164)
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Profile picture for Mike @dadcue

@doonman

I listened to a seminar from 2021 about NETs. One part struck me as being strange because it said "surgical removal" was the first treatment option for a NET. Surgical removal was contingent on the NET being localized and hasn't spread. For emphasis, it said the second treatment option was also surgical removal.

My primary NET is the distal ileum and localized but it has spread to 2 nearby lymph nodes in the mesentery. Everything suggests the surgical option will be recommended to me next week.

May I ask how much "remodeling" of my abdomen might be done? I'm leaning toward "playing for a draw" and just being treated medically. I currently don't have any symptoms that bother me. The thought of having abdominal surgery really bothers me!

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Replies to "@doonman I listened to a seminar from 2021 about NETs. One part struck me as being..."
Teresa, Volunteer Mentor | @hopeful33250 | Apr 5 7:19am

@dadcue

Here is a YouTube channel that has more recent videos on NETs.
--Neuroendocrine Cancer Awareness
https://www.youtube.com/@neuroendocrinecancerawaren6842/featured

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doonman | @doonman | Apr 6 10:34am

@dadcue I'm not a doctor, so my opinion is just that an unqualified/unskilled opinion. For me the in 2004 the removal of my tumor which was in my small intestine along with my appendix, ileum and 30 lymph nodes in my mesentery of which 8 tested positive for cancer gave me 21 years (give or take) of being cancer free with only minor abdomen issues. I had a laparotomy during my 2004 stay in the hospital. It took probably 12-18 months for me to create a new normal, but it was close to the old normal. Removal now 21 years later is not recommended because the oncologists all believe my cancer (per scans, etc) is not localized, hence Lanreotide injections. As I stated before I am not a doctor, but I believe your doctors know best. Playing for a draw when the doctors sound like they can do better, I'd bet on the doctors. If I may ask how old are you and are you in good shape? I understand why your apprehensive regarding surgery, who wants to have surgery? I hope my answer helped a smidge. Good Luck to you.

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