Welcome to the NETs Group! Come say hi.

I had surgery (Whipple) to remove a functioning NET from the head of my Pancreas after living with it for 10 years. For me my quality of life greatly improved after surgery but mine was functioning and made me very sick. Three surgeons recommended leaving it in (watching it). At the time of my surgery I had two new leasions on my liver and had them removed as well. Three years after the surgery I have new spot on my liver. I wish I had the surgery when I was first diagnosed but decisions are easier to make looking backwards and I had a lot of improvement after the surgery.

Just been diagnosed with neuroendocrine tumor of the pancreas! Will be having a PET scan soon with possible surgery within weeks. Shocked! Describes how I feel. The tumor is on the tail of the pancreas and is 1.7 cm and slow growing. Wait and see was an option, but I am scared of it spreading.
Hope surgery is the right choice.

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

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?

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

Hello everyone. I have bilateral Pheochromocytoma's on both my adrenal glands. I live in Oregon. This has been a 3 year ordeal that recently got me a diagnosis about 4 months ago. I'm currently phenoybenzamine currently and am feeling about 60% better but it's a daily struggle. I'm feeling pretty low and I'm pretty sure this is not the worst. I am wondering if I need to be at a tertiary center with bilateral lesions. My doctor has mentioned it but has not pushed it. Anyone here with bilateral Pheos?

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?

Question… I am having surgery the first week of November to remove roughly 12 inches of my lower section of the small intestine and two lymph notes. I was diagnosed with a dozen or so small carcinoid tumors about a month ago, I have never had any side effects or symptoms. My question is has anybody had this surgery laparoscopically or a large incision, what was your time in hospital, blood in stool, pain level and the first two weeks what should I expect.
When could you function alone and also drive. Thank you