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Tumor growth in three month follow up MRI

Neuroendocrine Tumors (NETs) | Last Active: Apr 6 8:26am | Replies (6)
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@fraaseo

Good point about Octreotide, I would definitely be asking the Dr.
I made it almost 2 full years after my initial SBO/NETS diagnosis. Surgery was hopefully the cure, Dr said I didn’t need shots or chemo & followed up with regular scans every 6 months. It wasn’t until 8/24 CT that Dr followed up with a PET Dotatate scan due to bowel wall thickening. My entire abdomen lit up, discovered peritoneal mets. I never felt bad or had any pain, crazy how NETS can spread! Some of the cancers he removed were the size of lead in a pencil. I’ve been taking Octreotide for 7 months. Good luck to you!

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Replies to "Good point about Octreotide, I would definitely be asking the Dr. I made it almost 2..."
splendrous | @splendrous | Apr 5 11:37am

Thanks for sharing. Do I understand that when you were diagnosed two years ago, you had surgery to remove the tumors with CT scans every 6 months as follow up. How large were your tumors at the time when they were removed? In 8/24 two years after the surgery a PET Dotatate was ordered because of what was seen in the CT and cancer was seen in the peritoneal.
How have your scans looked over the last 7 months you have been on Octreotide? Any change in the tumors? Where are you being treated? Thanks again.

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