NET in illeum, surgery or proper nutrition?!

@mimisayhi,

I appreciate you sharing a bit more about your NET history. It sounds like you have experienced a lot of symptoms that led to this diagnosis.

You mentioned that you will have surgery at the end of February. Do you have any questions about the surgery or the recovery period?

lots! And trying to get my oncologist or surgeon to call is not working! I have a very small NET (6mm) in my illeum. my surgeon will use laporsscopic to do surgery so I assume I wont have a very long recovery.

Here is a discussion group that might be of interest to you, @mimisayhi

--Need help with Diet After a Hemicolectomy
https://connect.mayoclinic.org/discussion/need-help-with-diet-after-a-hemicolectomy/
While this surgery was a bit different from the one you will be having, by reading the posts, you can connect with others who have had ileum surgery. As you read the posts, feel free to ask questions.

For those of us who have surgery for NETs, one of the most important things we have found is to plan on eating small, smart meals. This would mean not eating just three meals a day but eating several times a day. Eating "smart" means foods that are easy to digest (not creamy or foods high in fat and generally not raw fruits and veggies).

If you ask your doctor for a referral to a registered dietician at the hospital where you will have surgery, this would be very helpful to you. I've had three surgeries of the upper digestive tract for NETs and have met with registered dieticians twice, and they have offered marvelous support and suggestions for "eating smart."

My husband on 1/22/2022 was diagnosed 3 mm carcinoid tumor in his small intestines. We found a great surgeon who removed the primary tumor from small intestines GI tract. He detected 8 more lesions in his intestines had to remove 5 feet of his small intestines. No return of cancer in that area. Surgeon also removed lymph nodes and 22 lesions on his liver. Surgery was done 3/8/2022. Unfortunately his cancer had spread prior to being diagnosed with cancer. So he probably had it for years before we knew it. By the time we knew it he was considered Stage 4 advanced Neuroendocrine tumor spread to liver, lymph nodes and bones. If we would have gotten the primary tumor out sooner the surgery would have been 100% cured. Now we are 2 years later and the monthly Sandostain injection worked for 9 months keeping it stable On 1/4/2023 he tried Lanreotide injections On 7/12/2023 CT showed that the cancer was growing. On 9/22/2023 he started PRRT therapy has completed his 3rd round on 1/12/2024 one more to go in March. So we stay hopeful. Good luck to you but if you can avoid treatments to fight this rare cancer and we wish that his cancer was found sooner that surgery would have cured it 100% . We Don’t regret doing the surgery stay hopeful

Hello @sbds and welcome to the NETs support group on Mayo Connect. I see from your post that you and your husband have quite a journey with NETs. You make some very good points about early detection and treatment. Often NETs are not found right away. Many of us never had symptoms prior to the discovery of the NET.

I see that he is now completing PRRT treatment. How has he felt during this treatment? We have several members who have experienced good results from PRRT. I would encourage you to read the posts about PRRT in the following discussion group:
--Interested in Hearing People's Experience with PRRT
https://connect.mayoclinic.org/discussion/prrt-treatment/
--High Grade 2 and 3
https://connect.mayoclinic.org/discussion/high-grade-2-and-3-neuroendocrine/
If you are comfortable sharing more, I'm wondering if your husband was experiencing any symptoms prior to his diagnosis? How is feeling now?

He was 57 when His journey with major health issues started 1/20/2015 with a 100% blocked LAD artery(widow maker) that he survived with an emergency stent surgery. Does have heart failure due to the heart attack. Then on 12/28/2015 he experienced pain in his lower Ab had CT did not find anything On 9/12/2018 had black stools for a week called Doctor had to see Doctor immediately did a stool check and no blood was detected. Then 9/5/2019 admitted to hospital cause black stool again. Blood was detected a endoscope was done and a colonoscopy nothing was found. No CT was done. Doctor thought cause was from Plavix aggravating stomach. On 11/20/2021 had severe stomach pains after hours pain went away. On 1/22/2022 pain was so severe ambulance called and taken to ER. That’s when CT was done and cancer found. The cancer Doctor said that he has had the cancer for many years. So that’s our journey and hopefully the PRRT works staying positive

OMG, is stool blood a symptom of cancer ? They should have done a CT or PET scan years ago?! So sorry you and "he" are going through this. !

We thought since the endoscope was good and the colonoscopy was good. What are the odds that his cancer tumor was in the part of the small intestines that you can’t see in a endoscope or colonoscopy. He did not have constant pain or black stools during these years

Your situation is one we all face and I am constantly retooling my diet based on what I can find out about what feeds cancer. Here is an article , although three years old, that discusses one of our concerns which is how to not feed the cancer cells in our bodies.
https://www.nature.com/articles/s12276-020-0375-3
I recently changed my diet and added eggs and now will go back to avoiding them. One of the things that comes out in this article is the dependence of cancer on amino acids and in particular one called glutamine. Of course it also is necessary for good health as are amino acids in general so there is the quandry. First off let me state the highest levels of glutamine in food (mostly protein based) and this from another article-- Beef,Chicken,Fish,Milk,Cheese,Eggs,Beans,Cabbage,Spinach,Parsley
Sound familiar like the typical American diet especially with fast food?
I just started eating eggs again which now I will stop doing pretty much but in the past 9 years by sheer accident i have rarely eaten beef, eggs, no milk or cheese or any dairy, only a third of a can of salmon once every ten days and the same small quantity of chicken every ten days and no beans , cabbage, spinach or parsley. My diet has been fairly plant- based. This has occurred quite by accident and not through intelligence on my part as most fast food and so much meat is greasy which I don't care for.
So what should one do? I think the smart thing is to eat as much has possible a plant based diet and to limit one's eating in general. Keep the calories down. As to sugar intake, well avoid sugar on principle if not because of cancer but for general health of heart and to avoid diabetes. Drink water not commercially prepared drinks--sodas, juices, etc...
I am not a doctor so I don't give medical advice but I can read somewhat intelligently a medical article. I might suggest reading about the Krebs cycle (how normal cells work) and the Warburg effect which has a bit to do with cancer proliferation besides that above article.
Summary of what I have come to believe--plant based diet with a light diet greatly reducing calories. As I am a 21 year survivor that has to be worth something.

As to medical advice, well you have to rely on your oncologist and/or surgeon. But they don't know it all about carcinoids or they would have a good idea of what the cause of carcinoids is. And each of us who have them experience the situation differently, some luckier than most As with all cancer, a lot of what is said by medical professionals is at times intelligent theorization. They also are focused on solutions rather than prevention as that is their business.

As to the surgery part, It really depends upon location of the tumors. Unless you have major issues like intestinal blockage, for example, which does require removal for sure, some tumors can be in locations which makes the surgery a problematic issue of what is more likely to bring about mortality, the surgery or the tumors themselves.

We have been told that PRRT is effective. My husband had high uptake on positive receptors. He has his 4th PRRT in March. Then the plan is to wait 3 months to have a PET scan. Since the PRRT will cause the cancer to become inflamed and enlarge while treatment is working My husband has handled the treatment well