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Small Bowel Neuroendocrine Cancer, Metastasis to Mesentery Recurrence?

Neuroendocrine Tumors (NETs) | Last Active: May 26 6:45pm | Replies (13)
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@fraaseo

Do you have a NETS oncology surgeon specialist & a regular oncologist? Also curious why you only had 3 injections? I’ve had 2 surgeries & will be on Octreotide injections forever or until they are no longer effective, then on to the next medicine. Recent CT showed only one new area of concern. Will have ga68 dota pet scan done next month to see progress.

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Replies to "Do you have a NETS oncology surgeon specialist & a regular oncologist? Also curious why you..."
mikefrancis | @mikefrancis | May 25 4:09pm

Thank you. The following finding (along with symptoms) caused the treatment with Lanreotide:
“Non Specific mild uptake noted in the mid abdominal mesentery to the left associated with
subtle fat stranding but no definite mass or adenopathy. This could be related to mild
inflammation but attention on short interval follow-up DOTATATE PET/CT or enhanced CT would be recommended to exclude an early developing lesion.
2. Postsurgical changes without definite somatostatin receptor expressing tumor or metastasis.”

The follow up 90 days later was essentially the same. I decided to stop since there was no tumor on the scan and it did not help my symptoms. This cancer is so slow growing (sneaky) I feel they are missing something. -Mike

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