I recently had surgery to remove NET in small intestine

No symptoms at all. Still recovering from surgery. The sitting around not knowing what's next is my issue. My PET scan after surgery showed nothing. I'm thankful for that.

I saw the Oncologist a few days ago and all I can do now is sit and wait. Next scan in December. I have jitters but am learning to deal with it. I have had many sleepless nights thinking about the what if, second guessing etc.
What quiets the jitters? Knowing God has this and the outcome will be positive.

A bit over a year ago, I had a NET removed from my ilium and it affected both the large and small intestine. They were rejoined without the original valve, and 2 affected lymph nodes were also surgically removed. 6-7 affected lymph nodes in the areas of my small intestine remain as being not surgically removable. There are other small and insignificant indications of affected cells on top of my liver and on top of one lung. The tumor was grade 1, stage 4. I was then started on somatuline depot (lanreotide) injections every 28 days. It is not an inexpensive medication. My NET is currently described as stable and not spreading. My blood glucose and A1c levels are elevated, but not yet at panic levels. I am not a Mayo patient but am a patient in a large city without any recognized NET "specialists". I believe I am the only NET patient currently being treated at a very large cancer center. I have been symptom free since mid-May 2025. I have never joined a patient group in my life but find NET to be a very lonely disease. Most people and most doctors have never even heard of it. It is not going to go away, either.

@jerrydanhuffman
I was also prescribed Creon (pancrelipase) time-released digestive enzymes (also not an inexpensive medication). It was described as a "gimicky" drug by some providers. It has almost eliminated occasional loose, oily, light colored and very smelly stools. Now, those usually only occur 12 hours or so following lanreotide injections, and do not last very long. I was extremely ill feeling with every bad symptom following my first injection. That lasted for 2 weeks. In fact, I quit the injections after that for 3 months. The surgeon who removed my tumor was the one who convinced me to return to the injections. Since resuming injections, the side effects have been dramatically reduced. After some injections there isn't any reaction, but occasionally there is a mild, tolerable set. I recently tried to get a 2nd opinion, but Insurance difficulties have prevented that from happening yet. My relatively short experience with NET in a reasonably remote part of the US has certainly led me to believe in keeping a very strong sense of self-advocacy, and I believe in having the benefit of a "specialist" or team of physicians to augment care by local oncologists whose first NET patient was you.

@jerrydanhuffman

How did you decide to have the surgery?

My primary NET is in my ileum with 3 regional lymph nodes involved and one distant site that lit up on a Dotatate Scan. Surgery was recommended by both a NET surgeon and NET specialist. I wasn't "pressured" but the NET specialist said he could almost guarantee a bowel obstruction in the future if I didn't have surgery. If a bowel obstruction happened, I would need surgery on an emergency basis so that would not be ideal.

I didn't refuse surgery but I can't imagine doing surgery. The list of things that might be removed sounded daunting to me. I'm taking my chance and will get my 4th Lanreotide injection next week. I had the same response to the first 3 injections and was thinking I wanted to stop the injections too. The NET specialist suggested Creon or maybe something over the counter.

I don't know what to do. I will wait and see what the Lanreotide does after 6 injections. I will have another MRI and CT-scan with labs before visiting with the NET specialist and surgeon again. I'm not symptomatic except after the Lanreotide injections. Every hormone level they have checked has been abnormal. I was getting annual CT-scans since 2020 to monitor my kidney stones. The NET specialist said there was evidence of a NET on my CT scan in 2020 and every scan since then but it wasn't reported until 2025. They seem to know it is slow growing and said the primary site was Grade 1 maybe 2.

@dadcue: Mike I was in similar(but different) decision. My NET is small bowel primary (same blockage risk with tumor progression) with multiple metastases in liver. My surgeon pressed for extensive surgery (like yours), NET Oncologist agreed; however, I chose PRRT Lutathera infusion therapy to reduce size of slow growing tumors dramatically and risk any drug side-effects.
I chose quality of life over quantity. I was fearful of waking up after surgery on a feeding-tube, and facing a world of limited digestion and a LONG recovery. My decision only.
Long story short, after the 6mo PRRT treatments (which the only side effects was fatigue & precautions for 3 days post drug) I had MRI w&wout Evoist contrast about 60 days post last treatment - my tumors had shrunk dramatically & were smaller than at any time! One tumor was & continues to remain stable and many smaller tumor’s nuclei were GONE! Here I am touting this treatment to you in hopes you would have a dido.
Two years later and I still receive my 28 days Lanreotide shot only, hav had NO tumor progression, but I did opt to have repeated MRI’s (as above) every 3 months so my Radiologist and Oncologist and myself stay vigilant.
If you have any questions I can answer- I am here.
Another 2cents: one of our Mayo mentors I believe received surgery for ilium tumor similar to you (maybe Theresa?). Her comments may be invaluable to your decision. Just a thought…
Ultimately, I wish for a positive outcome and know you will make the best decision! dbamos1945

I started a reply, but the page miraculously disappeared. I shall begin again. You spell "ileum" much better than I do as "ilium". Thank you. I am not too adept with all the medical terms. You asked how I made the decision for surgery. My children intervened in my deteriorating health after I had studiously avoided doctors most of my adult life except for those times of extreme and dire emergencies. The start of my 80th year medical adventure was, "You have no choice in this. You are going to the ER tonight!" I had also smoked cigarettes for 67 years. (I do not say that with pride, but rather to be factual.) After they drained 1-1/2 gal. of urine from my bladder, a Foley catheter was installed, and I was told I was being prepared for a colonoscopy to look at what felt like a mass on my small intestine. A tumor was seen at the junction of the large and small intestine and included short sections of both and the valve between them. A small sample biopsy was taken. The doctor, who said he wanted to take my case because he wanted to see the person who should already be dead from smoking for so long, said the tumor was not cancer because it was very slick and smooth on the outside and had no ragged or uneven edges or margins. That lasted only long enough to get the pathology back. It was NET, grade 1, stage to be determined. I don't believe the doctor had ever heard of NET, because he had it written in large lettering on a page of paper when I asked what kind of cancer it was. I was, by then in a hospital room and bed. He said a specialist surgeon was coming in to visit with me about robotic surgery. The surgeon was a pleasant, relaxed confident and personable young man of 32. He briefly explained the procedure to me, my children and my wife. I said I agreed, but if a colostomy was required, just sew me back up and send me home. My eldest daughter said that was not part of the deal and if I agreed to surgery, I was completely in the surgeon's hands, end of story. So, get a bossy daughter (also an attorney) and 2 younger sons to back her up and you are headed to the cutting table. There were scans, blood tests, and lots of other bothersome bits and pieces to endure (Not to mention the most uncomfortable bed ever made.) I also had to have bladder stones removed and prostate accurately measured for surgery. Off I went wondering if I would recognize my own body when they were through. The surgery was exceptionally successful. My urologist, a man not given to compliments, got to watch all of it and described it as the most artful event he'd ever witnessed. I was told I could leave the hospital for a few days as soon as I had a bowel movement on my own. The third day after surgery was magnificent, and my bowels have worked miraculously well ever since. I do have the occasional loose stools for maybe a day after the lanreotide injections, but otherwise 99% of all the bowel movements are "ghost poops" that receive a brief applause from me in honor of the surgeon.
The only medications I take for NET are the lanreotide injections every 28 days and the pancrelipase tablets taken at every meal and snack. I have been given no other options, and not a single other therapy has been offered to me. I have a large range of blood tests every 28 days, 24-hour urine samples every three months and I've not had any scan in the last 6 months, nor have I been advised of one. I do not recommend having this disease in an area isolated from major cancer centers. I chose to live here, but NET chose to live in me.
A year later and having to change health centers due to insurance arguments with hospitals, changing all of the physicians and starting all over again, prostate laser reduction surgery, bladder examinations, and tons of antibiotics, my health is well on the mend, and the number of physicians caring for me has been reduced to 3. I am happy I had the surgery to remove the major tumor and 2 lymph nodes. I never knew how one diagnosis of NET would be a dramatic lifelong change and a stroke of fortune in that it seems to be a disease one can learn to live with and that can remain inactive for years at a time. at almost 82, there probably aren't a big lot of years left for me, unless my co-habiting disease will choose to remain quiet and let me live to 114 years.
My warm and best wishes are with each and every one of you as we all blaze individual paths through lonely and individualized diseases. It is marvelous for me to get to hear some stories about quite different experiences from mine. Thank you all!

@dbamos1945

Do you have an autoimmune condition?

I'm on a biologic that is keeping my immune system in check. I would need to stop the biologic in order to have surgery. God only knows how my immune system might react to surgery. I also have a history of an aberrant healing process after knee replacement surgery and was told I shouldn't have surgery ever again. I already have a lumbar fusion pending until I decide to do that surgery.

I don't know if chronic inflammation or all the immunosuppressive medications might have contributed to the NET. I was already seeing an endocrinologist for hormone imbalances until I was referred to the NET specialist who is also an endocrinologist. My neuroendocrine system and my immune system have been deranged for a long time. I don't think surgery to remove the NET will change any of this so that is why I don't want surgery. I don't want a bowel obstruction either.

The NET specialist discussed PRRT with me. I was more inclined to try that but it might eliminate the possibility of surgery or make surgery more difficult. I think PRRT is a possibility but I was told Lanreotide would not interfere with having surgery in the future. I opted for Lanreotide first to see what happens. The possibility of gall stones wasn't so appealing. I had a urinary obstruction because of kidney stones so I know any obstruction can be painful.

@dadcue: I have several autoimmune problems - lack of control of my psoriasis even taking rx, low thyroid levels adjusted with levothyroid, etc. I believe most cancer patients have immunity risks too.
I’m glad to hear you are considering PRRT among your treatment choices.
My understanding is that the 28day Lanreotide drug helps control symptoms (for me it is diarrhea) as well as tumor growth. I have taken it for 5 years in October - can’t say I enjoy it, but as of now I have NO side effects from Lanreotide. I am glad, since it is the only NET cancer drug I am receiving the last 2 years!
As proactive NET patient, I research treatments available and get opinions from peers and professionals, but eventually weigh RISK over REWARD when forced to making medical decisions.
You will make YOUR decision for best treatment for YOUR body!
PS: I have also endured bilateral kidney stones with urethra obstruction = 2 surgeries. It definitely was painful!

@jerrydanhuffman

Wow ... I have daughters but so far they haven't intervened on my behalf. They already think somebody needs to take care of me. I just turned 72 and my age is my best excuse to not have surgery. I won't tell my daughters how old you were when you had surgery. I have never smoked but I have some other vices so I won't be judgmental.

I have an enlarged prostate that is pressing on my bladder and makes it feel like I need to pee. My prostate isn't a problem except that it takes a long time to pee. I'm a retired nurse and have inserted Foley catheters into people. I was thinking if I ever needed one, I would do it myself rather than let someone else do that to me. I would use a smaller sized catheter because I know it is difficult to get past the prostate sometimes. More than a gallon of urine is too much to drain all at once.