I recently had surgery to remove NET in small intestine

I am feeling good now and yes I can eat. They are scheduling me for ct scans every 6 months.

Hello @hans051275 and welcome to the NETs support group on Mayo Connect. I agree with @dbamos1945 in getting a consultation with a NET specialist. If you live near any of the three Mayo locations, that would be a great place for a consultation. Here is a link with information about obtaining an appointment, http://mayocl.in/1mtmR63.

I have had three surgeries for NETs in the duodenal bulb. These surgeries have been over 20 years. This type of cancer is often slow growing and you need to be aware of the need for regular surveillance through CT scans, MRIs, or other tests that your oncology team may recommend. There have been many advances in treatment for NETs over the past 20 years since I began this journey.

How are you feeling? Are you able to eat OK?

My oncologist said because the liver and colon feed from same blood supply??

Check with all cancer centers for NET Specialist for consultation/2nd opinion on disease and future treatment. This may be virtual, but if not take all your records with you to appt. You will get superior care and advice.

Look into a second opinion.

In my case: I was told that the NET in small bowel (near duodenum) metastasized to liver which is the natural blood flow into liver. NET spreads at a micro level (imagine a dandelion seed) attaches and can grow to a size that can be identified by MRI (with & w/o Eovist Contrast) in liver.
If this happens to you don’t Freek Out when they say you are at Stage IV… this means that your NET disease has metastasized to another organ. We hear Stage IV and think of “regular” cancers where many are near death. Our NET cancer usually behaves much differently with some tumors staying Stable and only need to be watched carefully, other tumors grow very Slowly!
I hope this helps you stay vigilant in repeated scans of your abdomen/pelvic/liver region. There are some very effective NET treatments and it is wise to react sooner than later if tumors get larger (my opinion).
I will also share my experience that “cancer centers” give us the most accurate radiologist reports of our situation, particularly if they have prior scan discs available for comparison with current scan.
We have to be proactive and give our docs info they need to make best treatment decisions. Be grateful!
Best health to you!

I don't know why they said liver?? I have not been on anything for my stomach. I agree it's a awful feeling just waiting for the next one to appear!

I hope you are doing well and have no recurrence of NETs!

Do you mind sharing why your doctor stated that your next NET would possibly be on your liver? Also have you ever been on PPIs for stomach issues. Some think there is a possible link.

I had a NET removed from my duodenum bulb in October and the surgeon/oncologist that I saw for a second opinion told me that if I have recurrence it would be in the same area or liver. She didn’t give a reason for that, but said that I would just have to wait and see. Great feeling, but I’m doing my best to stay positive and trust in my God.

I will add you to my prays.

I have CT scans (with contrast dye) every 2 1/2 months. Bloodwork is done twice a month. I have an Oncologist with a team. This may be important.

I will be having a ct scan and labs done in the next 3-6 months.