What's next after SiNETS?

That’s exactly what happened to me in 2022; had every imaginable test possible & last test they finally found it! Ended up with a small bowel obstruction & surgery 2 weeks later to remove it, pathology confirmed NETS. No follow up treatment except for lab work & CT scans that showed nothing until 2 years later when a PET scan showed it had metastasized everywhere. Referred to NETS Oncology Specialist/Surgeon who performed cytoreductive/debulking surgery. HUGE painful surgery! Three weeks later I started monthly Octreotide shots. Nine months later I currently only have one very small area in lower GI & have been referred for Lutathera/PRRT treatment. Definitely stay on the Drs & DEMAND a GA dotatate PET scan for anything suspicious as the CT didn’t find my Mets. I’ve done great, never felt bad (after healing from surgery) & live a normal life. Monthly injections are painful so I use lidocaine to numb the area prior to injection. I wish you well!

So you've had a CT with contrast and a 9mm mass was found in or near your small intestine? You may or may not be a candidate for surgery. I suspect you'll next want a PET scan and/or a biopsy (if possible) to help determine what the mass is. I assume you've been having symptoms for a while? If NETs is what you have, then there are NETs specialist that can help you. Good luck.

My goodness, I guess I can expect a long road. Before my enteroscopy, I did have the gallium PET scan which was negative, so we thought it was all good.
I've been having so many symptoms. Very high BP and HR. Crazy hormone levels. Then the last blood work was normal. 51HIAA levels alway high. The endocrinologist I have said it needs to come out. But I suspect I'm not a priority. I don't know.
I'm to expect a Si resection but other than that, im lost.
I guess I need to wait and see. I live in Ontario, Canada. Its been exactly 2 weeks since the referral went in. I have no idea how long it will take. They don't move fast around here

I've already had the gallium PET scan. It was negative.
Blood tests are up and down. Many other symptoms. The referral to the surgeon has been in for 2 weeks.
The tumor is smack dab in the middle, in my Si. I'm in Ontario Canada. I think the plan is to just remove it with a resection. I've been symptomatic for several years now

I've had NETs of the small intestine (Mesentery) for many years. Let me offer this hypothetical:
If you do have NETS and its "well differentiated" slow growing and it's a singular 9mm mass, you and your NETS team might decide that you should go on a monthly Lanreotide or Octreotide injection to inhibit cancer growth and monitor. Lanreotide alone did wonders for my symptoms. You might live a long time with a monthly shot. I suggest you not rush into having a SI resection. Take your time and study your options.

Thank you for your reply.
We did discuss the shot and medication. My oncologist feels that why go on medication for my lifetime when we can remove it, run pathology, and then perhaps medicate. Honestly, im the kind that when there is a lump, bump, mark, I want it out. But I certainly will way my options and see what happens.
We still need to see if its metastatic. I'm a bit confused by it all.

Hello @carver1164

I've had surgery for three NETs in the duodenal bulb. It is a difficult surgery, and it takes a while to recover, but it is good to know that it is no longer there. I agree that where there is a lump, I want it out.

Will you keep posting and let me know how the process is going?

Wow, three surgeries so far...im not sure its really hit me yet. My Doctor said we are special.... :).
I will keep you posted for sure..

After you have the resection I assume you will start monthly injections(?), ask your Dr. I truly believe if I had started the injections after the first surgery the Mets would’ve been caught earlier & not been as bad. You have to be your own advocate, so stay on the Drs & make sure you have scans & blood work every 3 months after the surgery. Have you had Chromagranin A bloodwork? In my case it’s been a pretty good indicator of reoccurrence. Keep us posted!

Hi,
Well, I haven't spoken to anyone yet about anything. My referral to the surgeon went in two weeks ago. I will talk to her about meds..I get so red in the face, people ask me if I'm ok. Lol.
My Chromogranin A was elevated but has leveled out. 51HIAA has been steady and high. My norepinephrine have been high but also back to normal. Waiting for the call is the worst...
Honestly, I've had the worst doctor. I complained for years...he did nothing. I took myself to emergency, and they got the ball rolling. That was two years ago. I've been a very squeaky wheel.