I recently had surgery to remove NET in small intestine

@dadcue
I quit smoking on the first day in the ER and haven't smoked a single cigarette in 17 months. I will endeavor to continue that success, all the time being aware of how fragile a situation that is. Thank you for your lack of being judgmental. While in the hospitals I always asked physicians to find something wrong with me that wasn't attributed to having smoked cigarettes. They did. NET.

I had a Foley catheter for 4 months - a long time. I never inserted one and when the urologist advised me to remove it myself, I was quite reluctant but did so. I have taken tamsulosin (Flomax) since almost the first day in the ER. Two nights ago, I slept for 9-1/2 hours without having to get up for urination. That is a record, but it is now routinely between 4-6 hours between nightly voiding. When I first started lanreotide injections, it was every hour. That doesn't make for restful sleep. I still see a urologist, but only at 6-month intervals.

My children think I need help crossing the street, but I maintain my lawn mowing, edging, trimming and gardening myself, even in the 100 + degree weather we've been having. I am very ambulatory, do not require assistance and still am able to drive safely, although I don't enjoy it like I did when younger. I recently sold my Ducati motorcycle and do not want another one.

I have always been a rather modest person, and the first catheter insertion was equally as embarrassing to me as having to wear diapers as an adult for the first time. One quickly learns to leave modesty behind, as I have been able to do with catheters and diapers.

@dadcue
I do not have any auto immune disease that I know about, and my surgery was 15 months ago, very shortly after the NET diagnosis. The surgeon said the most serious reason for not waiting was the possibility of bowel blockage and possible rupture requiring extensive and serious emergency surgery. Unlike you, I did not have anything holding me back. and I wanted to keep my children from doing the operation themselves.

My pancreas has been described as "normal" as have my kidneys. My extensive and frequent blood test show values in the textbook ranges except for blood sugars, and I have consistently and constant low platelet count.

I have very little faith in the oncologist I see, and I believe I am a page or two ahead of him in reading the NET textbook. I do not fault anyone. It is a product of living in an area in which there are no NET specialists within a 500-mile radius of my city. The hospital group has a stand-alone endocrinology center that receives high marks, and there is one physician who has some experience with the endocrine side of NET. I am going there on Monday to see if I can set up a consultation. Neither of the two oncologists I've seen have ever mentioned an endocrinologist, but I am proceeding without them.

Hello, @jerrydanhuffman, I am just now catching up on your posts. It sounds as if you have made great progress since the NETs were first discovered. I'm glad to hear that you are active and basically feeling better now. Also, congratulations on giving up smoking! That is quite an accomplishment for a lifelong smoker.

I have had three surgeries on the duodenum bulb for NETs. The first surgery was in 2003 and the last surgery in 2016. So far, no other treatment has been needed.

I see that you will be seeing an endocrinologist with some experience in NETs. This is great to hear. I live near a well-known university medical center, and I also see an endocrinologist who has a good understanding of NETs. A good endocrinologist can put the pieces of a puzzle together in a marvelous way.

I look forward to hearing from you again. Will you post again and let me know what you learn from the appointment?

Thank you so very much for your kind comments. (Some days are very tempting to sit in my garage and smoke a cigarette. I have resisted and endeavor to continue to do so.) I feel exceptionally fortunate to have had the progress I've experienced with NET. I have had a lot more good fortune in my life than a normal person deserves. I am eternally grateful for that.

It is very pleasing and encouraging to hear that you've not required further treatment following three surgeries. Keep up the good work with that!

My referral documents have been received at the endocrine center, and I am now waiting on an appointment confirmation with the endocrinologist, and I really look forward to her input. I will gladly post again with information following the anticipated appointment. Thank you so very much!

I am three weeks post op from a bowel resection. Grade 2 stage 3 NET in the small intestine and 7 positive lymph nodes. Waiting on follow up appointments for adrenal gland growth and thyroid. My first follow up scan is in a month along with meeting my medical oncologist.
The most challenging part of recovery so far has been dealing with diarrhea and right side pain and swelling. I know it’s early - just trying to get back to my new normal.
I feel positive about my care team, knowing I’ll get more answers and direction in the coming month.

@tara2026 Hi and welcome to Mayo Connect. Sorry to hear about the challenges of diarrhea and right side pain and swelling. Are you taking or doing anything that helps? Does your care team have any suggestions? Thanks.

@tomrennie Thank you for reaching out. I am slowly adapting my diet according to what I’ve researched that helps. For swelling - not sure. It gets worse throughout the day.

@tara2026 Do you have a way to call or message your doctors to ask for some suggestions? Maybe something as simple as ice could help, but I am not a doctor. Hopefully, they can help. I wish that I had something more to offer.

@tara2026 Welcome! I'm pretty new here; diagnosed about 6 wks ago and awaiting surgery on the 30th for a NET of the small intestine. I hope I can keep a positive attitude the way you have!

I imagine you were given instructions at discharge for what to look for and when to call and check in. I've just been hearing if anything seems not to be getting better after discharge, or is getting worse, to contact the clinic. Perhaps your symptoms are just what they told you to expect.

I think it's so helpful to have a care team you trust. I'm glad you do. Let us know how you're doing.

I hope you are doing well now, lets us know your update