S4, G2 NETS in mesentery. Declined Exploratory Surgery

@nofire Since it is a grade 2, I agree there doesn't seem to be an immediate need for surgery unless the cancer is causing other medical issues. Do you have symptoms? Is it causing you any other problems? I personally try to keep my body parts in my body if at all possible. Others just want the cancer out. It is your body, so it ultimately is your call. I do understand where you are coming from.

@tomrennie Thank you! My thoughts were also to keep as much intact as possible. I am not having any issues as of now. Appreciate your thoughts and all others.

hi I live in Far North Qld Australia, I found out i had multiple net tumours in the mesentery end of 2021. One surgeon said nah i cannot do anything for you. Another one came in and said look i would like to go in and get what I can out with no guarantee I will. I decided to let him go in and try. March 2022 and 4 and half hours later 1.5m of bowel taken out and 10 lymph nodes taken as well. Largest in bowel was 2cm (total of 16 lil buggers removed). just wanted to post this as a positive to say surgery is possible mine were not causing problems just an incidental find after a scan for something else. I do have liver lesions in which they are monitoring.

@siluka Thank you this update too. I am going to go over everything again after the 6 months of Octreotide treatments. Surgery may be a next step as well. Best to you!

@nofire right now I am not receiving any form of treatment but monitoring of lesions on liver good luck on your journey

I had an outpatient peek & see exploratory so NET surgeon could see what he was dealing with after Pet/CT scan. Two weeks later I had the big Cytoreductive/debulking (CRS) surgery to remove primary SI bowel nets that had metastasized to my liver, peritoneum, abdominal walls, mesentery, diaphragm, cecum, gallbladder & appendix. It was a 2-3 month recovery but was worth every pain/discomfort I had. Three weeks P/o I started Octreotide monthly injections. Latest dotatate pet scan shows no reoccurrence with one new 1/2” spot. Very glad I had the surgery! Feel great!

@fraaseo So glad you're feeling great. Like I say, it may well be an option for me also. Right now, we are not aware of any progression outside of the intestines and mesentery.

@nofire Hopefully it stays put & doesn’t spread, I wish you the best!

I had a small NET tumor, two cancerous lymph nodes and some cancerous tissue in the mesentary removed from my ileum in 2022. It wasn’t until 2023, when I moved to Jacksonville, FL and had access to a Mayo Clinic scan, that they determined I still had NET cancer on the opposite side where the surgeon had not checked. I have two cancerous lymph nodes that have spread to that part of the messentary and to my liver.

I wanted to get surgery to remove them, but my Mayo Clinic specialist advised against it since I am already at Stage Four. My layperson’s thought was that I wanted to remove as much cancerous tissue as possible.

So far, my cancer is very stable, including in the mesentary.

I think every one of our situations is unique and requires the expertise of NET specialist physician like those at Mayo Clinic. They can see exactly where the NET cancer is and make the best recommendations.

But I followed my doctor’s advice, and so far so good. I truly believe a cure is coming, and that it will eradicate the NET cancer in our bodies.

Take good care! 😊

@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.