Welcome to the NETs Group! Come say hi.

@james8117 I forgot to reply about recovery at home. One of the things I'm so thankful for is my husband encouraging me to get a recliner before the surgery. It was very helpful for recuperating at home. Getting comfortable is a bit of a challenge. Also, having loads of pillows helps. Especially hugging a pillow across my abdomen, pretty much all of the time. Also, walking. I got up and walked around the house often. And, when I felt able, I would walk outside. I started by just walking to our mailbox.

I am so sorry I didn't respond earlier as I have been away for the last 2 weeks. I hope all is going well for you and that you are healing well from the surgery. In case you are up to reading this I thought I would share as requested by @colleenyoung. I had a hemicolectomy to remove a portion of the colon and ileum. It was laparoscopic surgery. I was in the hospital for 8 days as it took a while for my system to get working again. It was not a difficult recuperation as far as pain goes. They did have to insert a tube through my nose into my stomach for most of my stay because an ileus had formed and caused vomiting and diarrhea. Once that was inserted, it was just a matter of waiting to heal and waiting for my system to start working properly. I was on a liquid diet for most of the time and then the doctor decided to let me move on to a very tiny amount of SOFT foods. For example, a bite or two, to see if my system would start to work in the right way. It worked, thankfully. I then had a very strict diet and a small diet that was mostly liquid and increased over time at the hospital and at home. At home, my most difficult part was just trying to figure out a diet that would keep me from getting a blockage in my intestine. That has actually taken 6 months or more. It was difficult figuring out how much and which laxatives to use, which foods to eat, and finally figuring out that I had an accumulation of bacteria in my gut that will periodically need an antibiotic to clear up since my ileum has been removed. That was a great discovery and helped with the discomfort/pain on my right side of abdomen that I had been having almost the entire time. It's now something I watch for. It's probably one of my biggest take aways from all of this. Along with getting help/research on my own as to what foods to avoid going forward. I hope this all helps in some way. I'm not sure my situation matches closely with yours but maybe there's some nugget there to help you in your recovery. Take care and hoping all goes well for you.

Yes in November they took out my gallbladder thinking that is what the pain was. Then December 1 month from the day that my surgery was for the pain was back and so bad I couldn't stand. They did a CT scan and found the metastasis on my lower bowel on the outside of it and then the next day I went in for surgery they removed it and have had no pain since it was removed. I have had 24 hr urine test and blood test and a pet dotate scan. Now it has been a year the want to do another CT scan to see why I sweat profusely. I haven't had any side effects yet to my knowledge because I had the pain for about 5 years before them finding it. I will keep an eye on what the oncologist has told me to watch for but I just wish they had a specialist in Utah for this neuroendocrine.

Hello @marplute and welcome to Mayo Connect. I am sorry to hear of your NET diagnosis this year. I've had three surgeries for NETs and I understand how surprising this is. My NETs were quite small with no lymph node involvement and no metastasis and yet I had three surgeries in 2003, 2005 and again in 2016. There isn't any way to know when another one might show up. It sounds like you had clear scans after your surgery which was good.

As my NETs were in the upper digestive tract, I have upper endoscopies every other year and blood work yearly. I'm sure your medical team will come up with a follow up schedule for you as well.

You mentioned that you had lower stomach pain for several years. Is that now resolved?

Hello all I was diagnosed diagnose January of this year 2022. I have neroendocrine carsonoma .they took 6" of my lower bow and there were 8 Nodules in the area. They hope they got it all I have had a pet dotate scan. It showed nothing else was showing up they got it all they say.. I just am reading some of the comments and I'm asking myself how long before the next one shows up how often do you have to have scans. To my knowledge I don't have any side effects thanks. It's because I had had pain for over 5 years in my lower stomach but they could not find out what was causing it until they didn't CT scan in Dec of 2021. I am still raising 3 children I just want to be here long enough for them to raise them for their needs.

Hello @james8117

I'm glad that you will be having your surgery soon. Surgery is usually the first treatment in dealing with carcinoids. I have had three surgeries of the upper digestive tract (duodenal bulb) however, I only had a resection so there was not much of the digestive tract that was removed. My incision was from the breastbone to the navel.

I spent about 6 days in the hospital with a NG tube. Was an NG tube mentioned as part of your post-surgery treatment? During the time when the NG tube was in, I had no food, just the IV and some ice chips. Around the 4th or 5th day when the tube was removed, I had a liquid diet and then soft foods.

For pain control, post-surgery, I had an Epidural and that controlled the pain. Once I was released from the hospital I had a script for a pain med, but I got along with just extra strength Tylenol.

Since I was in the hospital about 6 days I went home without help, however, my daughter and friends from church checked in on me and brought food (not all of their food was appropriate for my type of surgery). Plan to eat soft foods post-surgery for a week at least.

As my surgery was different from the one you will be having, your experiences will probably be different. Do you have any other questions?

Thanks, @kjskjstein . It really helps to hear from patients. I would love to hear from those who have NED bone mets as well that had PRRT!

I have NETS mets to the liver with unknown primary and underwent PRRT treatment at Mayo Arizona last year (July 21-Jan 22). I completed all 4 treatments with a very good result result--significant shrinkage in all tumors. Follow-up since shows stability. The treatment itself is not difficult--a long day but the staff makes you very comfortable. My side effects were mostly fatigue (worse at the beginning of treatments) and not feeling great the first few days after treatment. By the end, my blood counts were down (to be expected) and I felt pretty tired--but in general the side effects are not difficult. I've been reminded by my doctor that every patient reacts differently, but based on my experience, I would do it again. Hope that helps!

Hi @james8117, those are good questions to be asking as you prepare for surgery of your small intestine. @hopeful33250 @kathryncd @smart1 @harley4650 might have relevant experiences to share to help you know what to expect.

James, do you know if laparascopic surgery is an option for you?

@tdylanbrowning, how did your Dad's Whipple surgery go? Was it confirmed that he has pancreatic neuroendocrine cancer?