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.

Turkey, Volunteer Mentor | @tomrennie | 1 day ago

In reply to @blackhluk "I hope you are doing well now, lets us know your update" + (show)

@blackhluk Hi and welcome to Mayo Connect. Are you dealing with NETs?

thunderdad5 | @thunderdad5 | 1 day ago

Important to find a net specialist to treat you. I would also get a 2nd opinion by a net specialist. I got a 2nd opinion via teleconference from Sloane Kettering in NYC which is the number 1 or 2 place to treat NETs. For me, after removing my small intestine tumor I was started on a first line treatment of lanreotide monthly injections. For me as well, I had a dotatate pet scan after I recovered from surgery to see if it metastasized. Unfortunately in my case, it had to my liver, bones, and lymph nodes. Good luck to you! But all net patients are different. Find a net specialist oncologist and take it one day at a time

Turkey, Volunteer Mentor | @tomrennie | 22 hours ago

In reply to @thunderdad5 "Important to find a net specialist to treat you. I would also get a 2nd opinion..." + (show)

@thunderdad5 Where can I read a list that shows Sloan Kettering in NYC as the number one or two place to get treated for nets? I have been looking for such a list and can't find one. Thank you.

thunderdad5 | @thunderdad5 | 22 hours ago

Let me try and find it again and i will forward it

thunderdad5 | @thunderdad5 | 21 hours ago

In reply to @tomrennie "@thunderdad5 Where can I read a list that shows Sloan Kettering in NYC as the number..." + (show)

@tomrennie
https://health.usnews.com/best-hospitals/rankings/cancer

thunderdad5 | @thunderdad5 | 21 hours ago

Type in neoindicrine cancer in the search bar.

thunderdad5 | @thunderdad5 | 21 hours ago

There are other listings out there, but this was from the most reputable site I could find

blackhluk | @blackhluk | 21 hours ago

In reply to @tomrennie "@blackhluk Hi and welcome to Mayo Connect. Are you dealing with NETs?" + (show)

@tomrennie Hi Tom, yes I have in liver and intestine

Mike | @dadcue | 21 hours ago

In reply to @thunderdad5 "@tomrennie https://health.usnews.com/best-hospitals/rankings/cancer" + (show)

@thunderdad5

I don't know which place is the "best" but it was an honor that was bestowed on only one place in the USA. Of course the honor is no longer awarded so it will remain the only place in the USA.
https://internalmedicine.medicine.uiowa.edu/divisions/endocrinology-and-metabolism/neuroendocrine-tumor-center-excellence