NETs: Scheduled for small intestine resection: What to expect?

Posted by mbg20 @mbg20, Mar 22, 2023

I was diagnosed with NET 2 weeks ago. I had symptoms of obstructed bowel which led to a CT scan showing a tumor in mesentery, followed by a PET/CT DOTATATE scan, then a CT with contrast. Also had a colonoscopy. The results showed a 3 cm mass in the small intestine and an adjacent 5 cm mass in mesentery, both withe DOTATATE uptake. Uptake in the retroperitoneal lymph nodes Oncologist says it’s Grade 4. No information on the Stage. Things are moving pretty fast bc of results showing obstruction in small intestine which could turn into a crisis. I am seeing doctors at Johns Hopkins. They started me on Lanreotide March 22 and I am scheduled for surgery next week on March 30 to remove the tumors and relieve the obstruction. This involves a small bowel resection.
I am quite worried about all this. Especially because it tuned out that this condition predates 2015 so although it is slow growing, it’s been growing for a long time and is now quite big. A CT scan in 2015 showed a 3 cm mesenteric tumor but no one noticed. Plus my brother died of NET in 1999.
I would appreciate some feedback on experiences with small bowel resection. The surgeon is telling me that there’s roughly a 10% chance I’ll have permanent diarrhea and also if he finds more extensive small bowel involvement that he may have to remove so much bowel that I might need to be feed via a port. Has anyone had experience with this?

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

bubbles2023 | @bubbles2023 | Jun 24, 2023

In reply to @bubbles2023 "My DIL received a biopsy report of “carcinoid NET in small intestine, stage 1”… What is..." + (show)

Colonoscopy with biopsy.

dearley | @dearley | Jun 25, 2023

In reply to @bubbles2023 "Colonoscopy with biopsy." + (show)

Thank you!

dbamos1945 | @dbamos1945 | Jun 25, 2023

In reply to @bubbles2023 "My DIL received a biopsy report of “carcinoid NET in small intestine, stage 1”… What is..." + (show)

Your experience is so personally familiar to me. I am sorry you are going through this emotional pain. I just want to add that no matter the testing results that the Oncologist has many options for treatment and some are stabilizing the tumor and restricting ability to metastasize. I am telling you that there is reason to HOPE!
I trust this will relieve some of the anxiety we all experience with the unknown. Self -talk must remain positive to control panic.

katinka58 | @katinka58 | Jun 26, 2023

In reply to @bubbles2023 "My DIL received a biopsy report of “carcinoid NET in small intestine, stage 1”… What is..." + (show)

My husband also has one in the small intestine that metastasized to the liver & spine, he has been on the Octreotide Injection for about 16 mos. & it has had no growth with MRI scans , The dr. said he would eventually like him to have it removed .

Teresa, Volunteer Mentor | @hopeful33250 | Jun 26, 2023

In reply to @katinka58 "My husband also has one in the small intestine that metastasized to the liver & spine,..." + (show)

Hello @katinka58 and welcome to the NETs support group on Mayo Connect. I am glad to hear that your husband's situation with NETs has been stabilized with the monthly injections.

How long ago was your husband diagnosed? Was he having symptoms that led to the diagnosis?

katinka58 | @katinka58 | Jun 26, 2023

In reply to @hopeful33250 "Hello @katinka58 and welcome to the NETs support group on Mayo Connect. I am glad to..." + (show)

My husband was diagnosed 2 years ago after finding a 2” tumor pressing on his spinal cord as his right leg kept giving out & he would stumble, his spinal cord was so pinched if he would have turned the wrong way or fell he would have been paralyzed from neck down, then with more scans etc., they found it had metastasized to the liver along with small intestine, he also has bone cancer, he has had 3 weeks of radiation & as previously stated Octreotide Injections

phyllisden | @phyllisden | Jun 26, 2023

In reply to @dbamos1945 "Your experience is so personally familiar to me. I am sorry you are going through this..." + (show)

Dbamos1945 and bubbles 2023 - Dbamos, your response struck a cord with me as your response to bubbles2023 was so like my thinking and my experience.
I passed my 5 year survivorship in March this year (diagnosed in 2018 with Stage 4 carcinoid of the small intestine that had spread smaller lesions throughout my body (no other major organs except my stomach). I started Octreotide shots right away, then had another blockage in July 2019 - this time in my large intestine. So overall lost 21" of my colon and small intestine and they removed my appendix as a precautionary measure. Thanks to the pandemic, had to wait a year to start PRRT at Mayo until April 2021, ending in October. Had my first followup scan in March, 2022 - everything stable (no new growth). Had another one two weeks ago, stable - no new growth! My oncologist is quite happy. I just get my monthly shots, labs and see doc every 3 months and live my life as if I have a chronic illness that I manage.
I recently attended the LACENETS Virtual conference and was surprised and pleased to hear about all the clinical trials and research going on. Having a positive attitude will be of great benefit, being educated about this situation in order to be an active and vocal member of the treatment team, and accept that this is life right now.
Oh, and find what works as far as stress management. If I get stressed out, it goes right to my stomach so I work hard to keep control of that.
Best of luck. And please stay in touch.

dbamos1945 | @dbamos1945 | Jun 27, 2023

In reply to @phyllisden "Dbamos1945 and bubbles 2023 - Dbamos, your response struck a cord with me as your response..." + (show)

@phillisden…
Your post is so encouraging to me. Learning how you have coped with NETS enabling the stability of this disease as a chronic health problem reinforces my desire to daily think positively.
I feel we have much in common. Thank you!