NET in illeum, surgery or proper nutrition?!

Sorry to hear you are going through this. Although friends are one of the most wonderful things in life, I don't take medical advice from mine. I've gone to an osteopath for many years (adjunctive to my allopathic PCP) and when I got my rare NET diagnosis my friends were all giving me tons of opinions, and I felt freaked out by too much feedback. Some was more alternative than I am, and some more interventionist! I couldn't synthesize it. The osteopath said bluntly: unless a person is a doctor and has you chart in front of them, you don't need to take their advice.
Of course your friend wants to offer their best. You might consider a nutritional consult after the surgery? At absolute least, get a second opinion from another nutritionist? I'm guessing all oncologists would suggest the surgery. Wishing you the best.

thank you! Yes! Its all overwhelming.

Are you seeing an oncologist who is a NET specialist? Is that who is recommending the surgery? If not, I would suggest (my non-medical background opinion as a NET patient) finding an oncologist who specializes in NETs and go from there. Unless your tumor is threatening an obstruction, you have time to find the expert recommendations you need: oncology, surgery and nutrition. I agree that your friend means well but with this rare cancer diagnosis, it’s best to stick with the advice of the experts. Best of luck! We all know how terribly frightening and overwhelming this is for you. We are here to support you.

thank you! I have a very good oncologist who is well trained in NET robotic and :laparoscopic surgery and scheduled for Feb 29. I will listen-to my friend nutritionist AFTER surgery.

Feb 19

Just one more thought. I am two weeks and 2 days out from similar surgery as you are scheduled for, though mine involved removal of a lot more cancer than just my SI primary tumor. Recovering has been rough for me so far because of the many, many trips to the bathroom with constant diarrhea. I am on a low fiber diet while my intestines and colon heal and hopefully start working. You could ask your nutrition focused friend for help with figuring out whatever your post-op diet will be. Just a thought, as I’m turning away well-intentioned neighbors and friends every day who want to cook for me and don’t understand I can’t eat anything but the most basic, bland, easily digestible foods. I kind of wish I had better nutritional guidelines and even sample meal ideas. The nutritionist who met with me in the hospital was not very helpful in this way.

I also had a tumor on my Ilium which I chose to have removed with surgery. I had severe pain in my stomach and after being told I had IBS for many years they finally discovered it when I vomited blood during one of my episodes. The surgery was the best thing for me, I have no stomach pain at all (done in August 2022). The cancer did metastasized to my liver and pancreas. I'm on monthly Lanerotide injections which help to stabilize the tumors. I switched to a plant based diet, exercise almost every day and my faith grew more than ever. I feel great although being on a plant based diet I did loose quite a bit of weight (already was thin). I'm still working on getting the weight back.

I wish you luck and taking your time with your decision. This is usually a slow growing cancer.

Hello @mimisayhi and welcome to the NETs support group on Mayo Connect. I see that many of our members have already shared their experiences with you. It really helps to feel connected with others who have travelled what seems like a lonely road. I joined Connect prior to my third surgery for NETs in the duodenal bulb. That was in 2016. As my first surgery was in 2003, I'm now a 20-year NETs survivor. My first two surgeries were invasive open surgeries; however, my last surgery was done at a university medical center where it was done through an endoscopic procedure.

As it was mentioned by another member, NETs can be a slow growing cancer for many of us. Surgery usually is the first treatment needed. After that, depending on your symptoms, other treatments can be added such as monthly injections to control symptoms related to carcinoid syndrome such as flushing and diarrhea. There are also great chemotherapy treatments available to NETs patients if there is metastasis, such as PRRT.

Most of us who have been diagnosed with NETs had no symptoms, the NETs were diagnosed during an exam for something else. Was this your experience as well or were you having symptoms that led to this diagnosis?

I was having debilitating abdominal cramps and diarrhea after eating, lost 30 pounds ...finally got bad enough to see a Dr. Ended up having MANY tests (blood urine stool), CT, Colonoscopy and Endoscopy. Yhats how my NET was discovered but I was also diagnosed with Microscopic Colitis and a toxin I took meds for. It was likely the Colitis and infection that caused symptoms, not the NET.

The best way is to listen to your oncologist and if you go for surgery- find a surgeon who is familiar with NET. As someone suggested - get nutrition advice after surgery. I had open surgery due to my very large tumor and need for hysterectomy at the same time. Recovery is not fast, but listen to your body! As far as diet - start a food journal - with food consumed and symptoms, then eliminate aggravating foods. Generally, a low fiber food with no red meat, low fat, and SMALL meals. Since I don't have most of my pancreas and no spleen or gallbladder I also take digestive enzimes (Creon) with every meal ( annoying , but you get used to it). Good luck! You got this!💜🦓