1. < Neuroendocrine Tumors (NETs)
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S4, G2 NETS in mesentery. Declined Exploratory Surgery

Posted by nofire @nofire, Nov 6 1:00pm

I was diagnosed with S4, G2 NETs in my mesentery. Suspected start in intestines but not definitive. After discussion with surgeon who recommended looking and trying to remove tumors and affected intestines, I declined the surgery. I was told he may or may not be able to get them, and he may or may not be able to get it all. It sounded like it would begin as a small surgery but could develop into a large undertaking with no guarantees. It sounded risky with many potential problems. I am now receiving Octreotide injections monthly. I have taken 4 injections with no problems. My plan is to see if there is any progression after 6 months when I will get another scan. I am not opposed to surgery, if need be, when/if the time comes. Has anyone else made the same choice and what were the results? I would love to hear what others have to say about my plan. Best wishes for healing to all!

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

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kg | @kgrear | Nov 11 2:48am
In reply to @siluka "@kgrear I live in Cairns australia. No net specialist here. I have a fantastic medical team...." + (show)
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@kgrear I live in Cairns australia. No net specialist here. I have a fantastic medical team. in 2022 i had 1.5 m of ileum removed and 10 lymph nodes (4 cancerous) now have liver lesions that are stable. Med team said if liver lesions grow and they are 100% sure they are nets then liver surgeon will do resection. CT MRI and Pet scan show the same liver lesions stable but knowing that it will be stage 4 i am confident they will resect the buggers, if you feel that you want to remove them then seek other opinion.

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@siluka
You are right to recommend a second opinion. My liver NETS are very tiny, but scattered throughout my liver and so they can’t do a resection. I wish you the best of luck! Please do keep in touch.

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siluka | @siluka | Nov 11 4:02am
In reply to @kgrear "@siluka You are right to recommend a second opinion. My liver NETS are very tiny, but..." + (show)
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@siluka
You are right to recommend a second opinion. My liver NETS are very tiny, but scattered throughout my liver and so they can’t do a resection. I wish you the best of luck! Please do keep in touch.

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@kgrear mine are tiny too. another recommended treatment for multiple liver lesions they may try is microwave ablation let me know how you go.

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jeremiah2911elmo | @jeremiah2911elmo | Nov 20 10:35am

Have non-operable S4 primary tumor in Mesentery, too close to liver blood supply. Had total hysterectomy in Feb 2025, wherein the decided too risky to intestines blood supply etc to try to take primary tumor. Have a lot of tiny 1mm satellite nets throughout abdomen. They did biopsy several off my liver. GI tract & colon clear for now. September scan shows involvement of 5-6 lymph nodes. Have been on Sandostatin LAR/octreotide injections since May, so far so good. I wish that they had been able to/had taken the tumor & more satellite nets in that Feb 2025 surgery.

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Teresa, Volunteer Mentor | @hopeful33250 | Nov 20 1:12pm
In reply to @jeremiah2911elmo "Have non-operable S4 primary tumor in Mesentery, too close to liver blood supply. Had total hysterectomy..." + (show)
Profile picture for jeremiah2911elmo @jeremiah2911elmo

Have non-operable S4 primary tumor in Mesentery, too close to liver blood supply. Had total hysterectomy in Feb 2025, wherein the decided too risky to intestines blood supply etc to try to take primary tumor. Have a lot of tiny 1mm satellite nets throughout abdomen. They did biopsy several off my liver. GI tract & colon clear for now. September scan shows involvement of 5-6 lymph nodes. Have been on Sandostatin LAR/octreotide injections since May, so far so good. I wish that they had been able to/had taken the tumor & more satellite nets in that Feb 2025 surgery.

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Hello @jeremiah2911elmo and welcome to the NETs support group on Mayo Connect. I can understand your concerns. Having the primary removed surgically would have been helpful. Are you currently seeing a NETs specialist? If not, I would encourage you to get a second opinion from one of these specialists. As NETs are rare cancers, a NET specialist has the training and experience to treat these tumors. As your NETs were just diagnosed this year, it would be an ideal time to connect with a specialist.

Mayo Clinic has NET specialists at all three of its locations. Here is a link with appointment information. http://mayocl.in/1mtmR63.

If, for any reason, you cannot be seen at Mayo, here is a listing from the Carcinoid Cancer Foundation of NET specialists throughout the U.S. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

How are you feeling? What symptoms are the most bothersome for you right now?

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Turkey, Volunteer Mentor | @tomrennie | Nov 21 8:54am
In reply to @jeremiah2911elmo "Have non-operable S4 primary tumor in Mesentery, too close to liver blood supply. Had total hysterectomy..." + (show)
Profile picture for jeremiah2911elmo @jeremiah2911elmo

Have non-operable S4 primary tumor in Mesentery, too close to liver blood supply. Had total hysterectomy in Feb 2025, wherein the decided too risky to intestines blood supply etc to try to take primary tumor. Have a lot of tiny 1mm satellite nets throughout abdomen. They did biopsy several off my liver. GI tract & colon clear for now. September scan shows involvement of 5-6 lymph nodes. Have been on Sandostatin LAR/octreotide injections since May, so far so good. I wish that they had been able to/had taken the tumor & more satellite nets in that Feb 2025 surgery.

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@jeremiah2911elmo Just some thoughts that have helped me. You can't change what has or hasn't been done. That can consume you with unhealthy thoughts. I know. I have been there. I try to just move forward. Harder said than done, but I found it has helped me physically, mentally and emotionally. It also allows me to be more objective with my current health challenges, find the best care team to help me with those challenges, and move forward with the best treatment possible. Make any sense?

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fraaseo | @fraaseo | Nov 21 10:58am
In reply to @jeremiah2911elmo "Have non-operable S4 primary tumor in Mesentery, too close to liver blood supply. Had total hysterectomy..." + (show)
Profile picture for jeremiah2911elmo @jeremiah2911elmo

Have non-operable S4 primary tumor in Mesentery, too close to liver blood supply. Had total hysterectomy in Feb 2025, wherein the decided too risky to intestines blood supply etc to try to take primary tumor. Have a lot of tiny 1mm satellite nets throughout abdomen. They did biopsy several off my liver. GI tract & colon clear for now. September scan shows involvement of 5-6 lymph nodes. Have been on Sandostatin LAR/octreotide injections since May, so far so good. I wish that they had been able to/had taken the tumor & more satellite nets in that Feb 2025 surgery.

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@jeremiah2911elmo Please be seen by a NET specialist! When a surgeon says non operable he may be speaking of his experience in trying to remove these tumors. NET specialists are trained & more experienced in tumor removal.

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trevor1522 | @trevor1522 | Nov 22 10:02am

Hi from Cheshire UK. I had same but opted to have surgery. This NET evil spreads and grows. Lanreotide stops a lot of side effects and can slow the progression, but my opinion is to not mess about with it. Get it out as much as possible then ‘nuke’ the rest, as many times as you can …and continue to have Lanreotide as well.
Good luck and God bless.

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annamay | @annamay | Nov 23 7:57am

Both my brother and I had NETs first found in the mesentery of the small intestine. Our surgeon is a NET specialist and her information made a great difference. We both needed to have the NETs removed due to their affect on our intestinal health. She also mentioned that removal of the primary tumors can have positive affects on metastasized tumors.
I recommend seeing a NET specialist. It has made a big difference in my care.
Best wishes for you. There are so many questions with this cancer.

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