First Appt with Surgeon Oncologist for SB NET

Posted by taly @taly, Aug 16 9:56am

Tomorrow will be 1 month since learning I had a small bowel NET at the ileocecal valve (found during a colonoscopy done bc of repeated diarrhea). I met the surgeon Friday and he explained that the tumor is 7 mm and that no other spots showed up on the Dotatate PET. But because SB NETs are known for putting out other small tumors, or sometimes being multifocal and having more than one primary spot, the surgery will be more than just removing the tumor.

It will be open, a vertical cut of maybe 4 " close to my navel and removal of maybe 8" of intestine, including the valve, dissection of the mesentery and lymph nodes it drains into, and palpation of the whole small bowel to be sure there are no tiny tumors which would be too small to show up on a PET Scan (and which would necessitate removing more intestine). The two ends of the intestine are then connected to each other. Lack of a valve will cause diarrhea which I'll need to try to manage.

The final staging occurs after the surgery and biopsies of the tissue removed. For now it is a temporary assumption of Stage 1. It seems I've had symptoms of a functioning tumor, and he said that's possible, but he feels it's unlikely it's metastasized to my liver. The surgery will probably be late Sept.

I'm so grateful for the care I'm receiving at Mayo Phx and the support of this group! Thank you!

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

Mike | @dadcue | Aug 16 10:53am

Sounds exactly to what I was told. There was talk about a “possible cure” if I did surgery. However, post surgical complications were hard to predict. Also, everything that would be removed was hard to predict. They would remove my gall bladder because I would still be on lanreotide after surgery. I would need to wait 10 years after surgery to know if I was cured.

anon0995 | @anon0995 | Aug 16 4:47pm

@taly
Hello! Keeping good thoughts for your upcoming surgery! I was diagnosed in 2020 with Stage 4, Grade 3 SBNETs - same location as yours. IMO, you are so very fortunate to have caught this early on and fingers crossed it will be confirmed Stage 1.

When I met with the NET surgeon/team at UIHC, he almost didn't perform surgery - I did point out from what I read and understood, I was only 2 points 'into' Stage 3 (lol) and fortunately he and the tumor board agreed surgery was an option for me. Ileum, gallbladder removed along with some liver mets and as many of the tumors in the mesentary he could safely reach. The 2 small tumors found in the intestine which Drs believed were the primary site(s) were also removed. It took about 1 year for my digestive issues to find a new normal, and as long as I watch my diet, take pre-probiotics, OTC pancreatin, and get my monthly Lanreotide shot, life w/NETs is pretty darn good!

(@dadcue): As far as "predictions" go , well.... we all hope things will go as planned, lol. Also, I hope you choose to accept surgery. After recovering from the extensive surgery, my gastro issues pretty much stopped! I am sure in my case finding the 2 small bowel tumors (primaries) is why I'm still on the right side of the grass 6 years later and holding at "stable" (oh! I also chose to have PRRT tx several years ago due to mild progression). Prognosis in 2020 was "possibly 2 years'"....

Mike | @dadcue | Aug 16 6:55pm

In reply to @anon0995 "@taly Hello! Keeping good thoughts for your upcoming surgery! I was diagnosed in 2020 with Stage..." + (show)

@anon0995

I still don’t know about surgery at the age of 72. I feel like I will be well cared for. Dr Dillon is my NET specialist at UIHC. He has reviewed all my annual CT scans since 2020 which retrospectively showed evidence of NET in 2020. Those annual CT scans were monitoring my kidney stones. It wasn’t until December 2025 that the radiologist reported a possible SBNet. This was later confirmed with labs and a Dotatate scan. The metastasis is localized but one distant site lit up too.

bonnerpb | @bonnerpb | Aug 17 6:11am

Please post next steps in your journey. I am facing similar situation but will not be evaluated again until November.

Mike | @dadcue | Aug 17 8:11am

In reply to @bonnerpb "Please post next steps in your journey. I am facing similar situation but will not be..." + (show)

@bonnerpb

I will be reevaluated in November as well just to see if lanreotide has improved the outlook for my future. I will see both the NET specialist and the surgeon. So far, the only thing that has been “predicted” is a bowel obstruction if I don’t electively have surgery. If a bowel obstruction happens, surgery will be needed under emergency conditions.

bonnerpb | @bonnerpb | Aug 17 12:43pm

In reply to @dadcue "@bonnerpb I will be reevaluated in November as well just to see if lanreotide has improved..." + (show)

@dadcue
I have a restriction at the ileum ,SB net and a pancreas net. Started Tempfrya in May.
All being reviewed at Mayo Clinic Phoenix in Nov.
I am 77yrs old. Stay in touch.

Turkey, Volunteer Mentor | @tomrennie | Aug 17 5:33pm

@taly Sounds like things are moving forward. Good for you. Now that you had a little time to process everything, what are your thoughts?

skjones56 | @skjones56 | Aug 17 8:23pm

Good luck and may God be with you. I have Pan NET with liver involvement. Post op 16 months an doing well on Lanriotide. Get yourself mentally prepared and remember we are here if you need to reach out for support.

taly | @taly | Aug 18 12:45am

In reply to @anon0995 "@taly Hello! Keeping good thoughts for your upcoming surgery! I was diagnosed in 2020 with Stage..." + (show)

@anon0995 Thank you! I'm glad you were able to do your surgery. It sounds like they're executing a good treatment plan for you and life is good. That is music to my ears. May it be so for all of us!

@dadcue I am also 72 YO. I have one nighttime breathing condition that makes doing surgery under a general a bit more complicated. They're going to see what can be done in the sleep dept. beforehand. It makes me a little nervous but everyone definitely thinks surgery is my best option and I don't disagree. Best of luck to you!

taly | @taly | Aug 18 12:49am

In reply to @skjones56 "Good luck and may God be with you. I have Pan NET with liver involvement. Post..." + (show)

@skjones56 Many thanks and good wishes to you! I'm sure I will reach out again!

@tomrennie Thanks for asking. I'm kind of all over the place. I live alone so that makes it seem a little more daunting. I have friends, family, etc. though.. Between all of them, I think I'll find the help I need.

I've been feeling increasingly fatigued and foggy minded in recent months and especially recent weeks. I used to be able to take care of my 4 YO grandson while his parents were at work and am soooo missing that. This isn't exactly what I would have chosen for a next chapter. 🙂 But I realize every day how incredibly fortunate I am. Being able to share this new journey with all of you is also such a blessing!