Thank you for your words of encouragement on this journey! Now ???

Posted by rocket102 @rocket102, Aug 23, 2023

Just to recap, biopsy showed neuroendrocrine tumor. Had follow up MRI. Mass wasn’t identified.
Surgeon said it would be better for GI to try and get it out from the small intestine due to location. If that wasn’t successful surgery would be needed.
Well the GI doctor couldn’t find the tumor. Even did an ultrasound.
First six hours, happy. Now I have nothing but questions!! They are looking into the matter but, wow. Mixup? Wasn’t a tumor? Couldn’t find it?
Not sure what to think now.
Dr wants to do another endoscopy in 3 months.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

kim1965 | @kim1965 | Aug 24, 2023

You have been confirmed to have NET. Your next best step is to become part of a multi discipline team consisting of a NET Specialist. Many regular oncologists have not dealt with NET enough to understand how to treat it properly. Find who is in your area, and at least get a 2nd opinion. Remember your the patient, get the best care for you. Good luck in your fight against NET, we are all here to help with suggestions or ideas that lots of us have experienced already to make your path a bit smoother in the shortest possible path.

rocket102 | @rocket102 | Aug 24, 2023

Thank you, my case was supposed to be presented to a team yesterday.

davisnrn | @davisnrn | Aug 24, 2023

My primary NET was in the small intestine lining—did not show up in any scans. I had a larger secondary NET in the mesentery that was walnut sized. When I had surgery (20 inches of small intestine removed, the primary tumor was found by manually exploring the intestine that was removed and finding it as a hard BB sized tumor within the lining of the intestine. My surgical oncologist said he found the primary about 80%of the time Pathology confirmed the primary was NET. All that was reassuring but I was prepared they might not find it. I would encourage you to go with what is known, but don’t hesitate to question and seek additional information and opinions so you are confident in your next steps. NETS are different than other solid tumors in many ways (primary smaller than secondary so I was told) so you need a NET expert on your team. Good luck and think positively—I was diagnosed in 2014, have had one GI surgery, mets to my liver, ablation of half the liver mets, 5 years of monthly Lanreotide, now on Everolimus for 6 months—and I am doing well, generally feeling good.

rocket102 | @rocket102 | Aug 25, 2023

In reply to @davisnrn "My primary NET was in the small intestine lining—did not show up in any scans. I..." + (show)

Thank you for sharing this. So confusing….

Colleen Young, Connect Director | @colleenyoung | Sep 3, 2023

In reply to @rocket102 "Thank you, my case was supposed to be presented to a team yesterday." + (show)

Any update, @rocket102?

rocket102 | @rocket102 | Sep 4, 2023

In reply to @colleenyoung "Any update, @rocket102?" + (show)

Thanks for checking in, Colleen. Doctors feel that most of the tumor must have been removed with the biopsy. They want to repeat an endoscopy with ultrasound in three months.
They would not say that everything has been removed.

rocket102 | @rocket102 | Sep 8, 2023

In reply to @rocket102 "Thanks for checking in, Colleen. Doctors feel that most of the tumor must have been removed..." + (show)

While it feels a bit unsettling to know a few cells may still be there we were assured that they are slow growing and waiting the three months to recheck was best.