I recently had surgery to remove NET in small intestine

Posted by hans051275 @hans051275, Feb 12 10:13am

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.

@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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@sanarpin

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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