Hello @tkubista and welcome to Mayo Clinic Connect!

I am sorry to hear about your NET tumor and your upcoming surgery. As NETs are rather rare, it is hard to find others with this diagnosis which makes venues like Connect invaluable. You mention that your NET was found in the small intestine. I have had three NETs in the duodenal bulb. The first two surgeries were invasive and they included resection (with fairly large incisions and exploration into the rest of the lower digestive tract). The third surgery was done endoscopically, which was in fact an outpatient procedure. Is the surgery on the sigmoid being done because of diverticulitis? (I ask because you did not mention a NET being found there.)

Regarding the resection, as the surgery was done on the duodenal bulb, I was in the hospital for several days after surgery because I wasn't allowed to drink or eat and received IV fluids, and also had an NG (nasal gastric) tube. Since you are not sure of the exact location of the NET in the small intestine, I'm not sure if this is will be necessary for you. If you can get a copy of the PET scan you might be able to find the exact location in the small intestine. You can usually get a copy of all reports on the patient portal and if you don't have access to a patient portal, you can always request your doctor to send you copies of all reports. I would highly recommend that you have and keep copies of everything that is done, including the surgery and biopsy reports.

Has your surgeon given you any information about the length of your hospital stay or any other particulars about after-surgery plans? My GI surgeon did explain about the several-day hospital stay and the use of the NG tube so I was prepared for that.

NETs tend to be very slow-growing cancers for the most part, which is a good thing. They don't react to regular chemo nor radiation. If you do have symptoms of carcinoid syndrome at any point down the road there are monthly injections that you can have that help with these symptoms.

I am not familiar with the laparoscopic procedure nor of having two areas operated on at the same time. I will tag some others in our group to see if they have had surgeries on more than one area of the intestine.

In the meantime, here is a website that will provide you with more information about NETs which you may find helpful, https://netrf.org/for-patients/.

Here is another website that will point you to support groups (they will undoubtedly be online now because of COVID). https://www.carcinoid.org/

I look forward to hearing from you again. I hope all goes well on December 28. Will you post again and let me know if you have any other questions?

Jump to this post