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!