1. < Neuroendocrine Tumors (NETs)
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I recently had surgery to remove NET in small intestine

Posted by hans051275 @hans051275, Feb 12, 2025

They did a rt hemicolectomy and small bowel resection. They also did a wedge resection of my liver. They removed all of the tumor. Liver pathology came back clear. What concerns me is 7 out of 20 lymph nodes came back positive and they are telling me there is no treatment. They said high reoccurence and to just do scans and lab work every 6 months. Is this true no treatment just wait for reoccurence???
--Well-differentiated neuroendocrine tumor, grade 2.Tumor is 1.8 cm in greatest dimension.
Lymphvascular invasion is identified.
Perineural invasion is identified.
Number of lymph nodes examined: 20.
Number of lymph nodes involved: 7.
Maximum size of metastasis (glass slide measurement): 4 mm

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

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Turkey, Volunteer Mentor | @tomrennie | Apr 27, 2025
In reply to @jlsgt "This is the article I found and referenced. I don't know about the actual study. https://www.everydayhealth.com/gastroenteropancreatic-neuroendocrine-tumors-gep-nets/" + (show)
Profile picture for jlsgt @jlsgt

This is the article I found and referenced. I don't know about the actual study.
https://www.everydayhealth.com/gastroenteropancreatic-neuroendocrine-tumors-gep-nets/

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Thanks for sharing. There is a lot of great information here. I am grade 2 pnet stage 4 and have been on chemo for over 2.5 years. It is working for me. We all react differently to the cancer and treatment unfortunately. It is a bit of trial and error at times to figure out what works for each of us.

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Teresa, Volunteer Mentor | @hopeful33250 | May 12, 2025
In reply to @sanarpin "Stay positive, I had 15 years ago nec in my small intestine, surgery sucesfully but secondary..." + (show)
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Stay positive, I had 15 years ago nec in my small intestine, surgery sucesfully but secondary effect Diarrea, since 4 years ago found liver cáncer inoperable, treatment lanreotide injection per month and 4 cicles of PRRT LUTHATERA-177 cancer stable, two years ago breast cancer small tumor test.. estrogen positive all hhis cancers was about hormonal teraphy. You can found experts in PRRT. I am in Houston and Excel Diagnostics apply me 4 doses of Luthatera, finish 2 years ago, now is a little bit grow one tumor and have two more sessions of Luthatera, but I am waiting for prrt Alphamedix to be approved for FDA. But I never give up snd I feel very well

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Hello @sanarpin and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum and are sharing your experiences. Shared patient experiences are so helpful when you are dealing with cancer and especially a rare cancer like NETs. It sounds as if the treatments have been helpful to you.

I had my first surgery for NETs over 20 years ago and have had two more surgeries since then. While I've never had carcinoid syndrome, I have had weight loss and a poor appetite. At this point, surgery has been the only treatment that I've needed.

I'm glad that you said, "But I never give up and I feel very well." How is your appetite, have you lost weight?

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ron14207 | @ron14207 | 9 hours ago
In reply to @jlsgt "I'm in the same boat. Well differentiated, had small bowel resection, still have a mass and..." + (show)
Profile picture for jlsgt @jlsgt

I'm in the same boat. Well differentiated, had small bowel resection, still have a mass and cancerous lymph nodes. Having a PET scan every six months. Your surgeons thoughts/comments are typical for a person with cancerous lymph nodes. My surgeon said "there is no cure for it". The good news is you have a condition that it is possible to live a long time with. Lanreotide or Octreotide are two drugs that are reported to take away the building blocks that Neuroendocrine cancer needs to grow. Maybe discuss these with your docs.

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@jlsgt It has been over a year. How are you doing now?

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Turkey, Volunteer Mentor | @tomrennie | 7 hours ago
In reply to @ron14207 "@jlsgt It has been over a year. How are you doing now?" + (show)
Profile picture for ron14207 @ron14207

@jlsgt It has been over a year. How are you doing now?

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@ron14207 Hi and welcome to Mayo Connect. Are you dealing with neuroendocrene tumors too?

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jlsgt | @jlsgt | 7 hours ago
In reply to @ron14207 "@jlsgt It has been over a year. How are you doing now?" + (show)
Profile picture for ron14207 @ron14207

@jlsgt It has been over a year. How are you doing now?

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@ron14207 I'm still getting a Lanreotide shot once a month. Last PET scan showed no real change to tumor(s). That was about 3 months ago. I feel pretty good most of the time. I may have a carcinoid syndrome like flareup once in a while. Life is still good for me. I'm so grateful because I know what it's like to feel bad all the time. How are you doing?

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ron14207 | @ron14207 | 4 hours ago

Well physically recovering from surgery 7 weeks ago and doing well. Removed tumor from small intestine. Had a PET scan and nothing was found. Dr will rescan in 3 months. Emotionally not so good! Even though tumor was removed with clear margins etc I am worried. Dr only said maybe I'll need a shot every month but maybe not. I think it's the lack of difinitive answers is what is upsetting. So I will see what December brings with the next CT scan.

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Turkey, Volunteer Mentor | @tomrennie | 1 hour ago
In reply to @ron14207 "Well physically recovering from surgery 7 weeks ago and doing well. Removed tumor from small intestine...." + (show)
Profile picture for ron14207 @ron14207

Well physically recovering from surgery 7 weeks ago and doing well. Removed tumor from small intestine. Had a PET scan and nothing was found. Dr will rescan in 3 months. Emotionally not so good! Even though tumor was removed with clear margins etc I am worried. Dr only said maybe I'll need a shot every month but maybe not. I think it's the lack of difinitive answers is what is upsetting. So I will see what December brings with the next CT scan.

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@ron14207 So the next scan determines if you will get the shot or not? Are you experiencing symptoms?

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