Welcome to the NETs Group! Come say hi.

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?

Hi Neuroendocrine Group, I am Neuroendocrine Breast Cancer (rare) with mets in liver and bones. It took 2 years for me to find a doctor to acknowledge this. Prior, I had been treated like every other breast cancer patient and it wasn't working. Now I have had one Bland Liver Embolization to the right lobe, and have my second one coming up soon. This should take care of the liver tumors. BUT, the bone mets are worse, even on the Octreotide, Afinitor and Anastrozole. Sooo, I have been given the option of Lutethium infusions, which is really radioactive intravenous treatments that target the cancer. Its given over a course of 6 months, once every 2 months for 4 treatments. I'm a little nervous about it. Anyone else have liver and bone mets that this was successful in treating? Or for any other NED's? What's been your experience? I've heard about some good results.

Hello,
Am Ayesha from Massachusetts, just diagnosed with small bowel carcinoma, 2 weeks ago. I have more scan ahead ( dotatate) then consultation. I am overwhelmed, don’t know if am dying or what! I was supposed to see a doctor last week but then i got covid so appointment was moved to 2 weeks later. I don’t have any info as of right now, i just cant relax and can’t sleep. I don’t know what to expect on my next scan , i am praying that my cancer has not spread to my organs.