I recently had surgery to remove NET in small intestine

Hi cu2

The contrast dye in the C.T. scans makes quite a difference. Plus, like me, you might have to raise, or lower the amount of Lanreotide or frequency. It's a balancing act, until you change.
Good luck!

I have scans every six months plus I do my Lanreotide injection every 28 days and I also have blood work done at that time too.

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 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.

My version of my NET journey: I am sorry to say that having diagnosis of Neuroendocrine Tumor cancer is likely to lead to frequent scans long term. Our type of cancer can appear and progress throughout our body, so the best thing to do is keep vigilant and report any unusual symptoms to oncologist.
Now for the good news: our type of cancer tends to grow very slowly! We also have many avenues of treatment available to us if tumor progression is found that can stabilize, shrink or eliminate cancer cells.
Bad news: no cure!
Be hopeful and lead a happy life. 🙂

My version of my NET journey: I am sorry to say that having diagnosis of Neuroendocrine Tumor cancer is likely to lead to frequent scans long term. Our type of cancer can appear and progress throughout our body, so the best thing to do is keep vigilant and report any unusual symptoms to oncologist.
Now for the good news: our type of cancer tends to grow very slowly! We also have many avenues of treatment available to us if tumor progression is found that can stabilize, shrink or eliminate cancer cells.
Bad news: no cure!
Be hopeful and lead a happy life. 🙂

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.

Ct scan in 6 months

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.