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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 @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?

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.

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.

@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.

Hello @james8117

Just a note to wish you well as you are on the road to recovery from surgery. I hope that all went well and that you have all of the support and help that you need during your recuperation.

When you feel up to it, will you let me know how you are doing?

Wow! Let me saw that I was treated like a rock star at Mayo in Jacksonville. My surgery was on Nov 03 late afternoon. Obviously I was knocked out, no catheter, 2 hour operation in which the surgeon removed about 22 inches of my lower part of the small intestine along with 2 nodes. The surgeon looked at my liver and saw nothing suspicious and he glued me back up. I was blessed with 2 puncture wounds from the laparoscopic tools and small 3 inch incision down my belly through my belly button. I slept like a baby the first night, I woke up about 7 AM still groggy from surgery and met with the surgeon and the surgical team and they explained to me the process which was very basic. Later that morning I took 10 mg of Percocet and the nursing staff encouraged me to walk around the floor. I was an overachiever and started walking and walking and walking and the next thing you know a nurse ask that I stop walking, according to my Apple Watch I walked 2.8 miles. They all laughed at me and told me to go sit down. Day one all I had was chicken broth and Jell-O which were both disgusting. Day two I was able to have two pieces of French toast and some fruit for breakfast, late lunch I had a grilled chicken breast and mashed potatoes along with some pears, all the food was delicious except for the broth. Sunday afternoon around 1 PM I had my first massive explosive bowel movement and two hours later I was released. During the three days in the hospital I only took two pain pills and three or four doses of Tylenol. Today is Tuesday and I’m already at home after a 6 Hour Dr. from Jacksonville to Destin Florida. The surgery was nowhere near as bad or uncomfortable as I thought it was going to be, but it was no walk in the park. The gas pains are severe, and I still have diarrhea 6-8times a day. I was sent home with a few pain pills and a 10 day self-Administered shots to prevent blood clots. Easy Peasy.
My follow up appointment is in 30 days or so with an oncologist to see if they want to do a pet scan or a CT to verify all the cancer was removed. Blessed

Are you planning to have them removed?

Hello @james8117,

It was so good to get your update. I'm so pleased that you had a good surgical experience and that you were treated so well at Mayo Jacksonville.

How ae you doing now that you are at home? Are you managing meals and other activities ok?

Yes no issues at home. I walk 3 times 1 mile each outing, I just take it slow and easy.,my stomach hurts/aches but it’s not bad. Today I drove myself to grocery store but had the bagger load my groceries. Trying not to over do it but I am a 52 yr old make that’s active in life. So far life is good but I’m not fond of giving myself a shot in the belly for the next 9 days. I have oxi for pain but I won’t need them unless I sneeze then I’ll probably cry