Found PNET on tail of pancreas but told it’s nonfunctional

My husband is scheduled for the same surgery in mid Nov. it will be done robotically. Can you give any tips on your post care?

I had Whipple and liver ablation, liver resection in 2019 primary NET was on the head of the pancreas. I had a drain that healed on its own at 4 months. It was draining around 230ml a day then it just stopped. Wishing your hubby the best.

Thanks for the info 🙏
Week 7 Dr pulled 4 cm out. Pain became severe. Week 8 stitches came undone and 20 cm came out off to the Dr the next day and have decided to removed it due to irritation and hypergranulatiin. Was draining < 20 mls. He is in a lot of pain described it as been punched 20 times likely from tissues attached to the drain inside. Hope he recover soon. How are you now post whipple?

I know I'm kind of jumping in here, so my apologies if it's not helpful. I had my surgery roboticly and the pist op was quite uneventful. I was only in the hospital a few days. I was on a general diet. Minimal pain. I did go home with a tube for about a month. Not a problem. Symptoms subsided gradually. It was much easier than I had expected. I may be an outlier. My best wishes for your husband.

Hello @maggieflorida and welcome to the NETs support group on Mayo Connect. I see that @lu7 has already responded to you about her robotic surgery. As we wait for @michellesimpson10 to respond, I was wondering if you would care to share a bit more about your husband's NET. Is this a new diagnosis for him?

As many others, including myself, never had any symptoms prior to the discovery of the NETs, I was wondering how your husband's NET was found. Was he having problems that led to the discovery of the NET or was it found incidentally, when the doctor was doing a scan or test for something else?

How is he feeling now?

My husband is a retired radiologist. He has had ibs and upper gastric pain for several years. As his symptoms began getting worse he started to wonder if it was pancreas related.
Sure enough new images showed a small (2mm ) lesion in the tail of the pancreas and a 5mm in the body of the pancreas. Perhaps exposed to to much
radiation. His surgery is scheduled for Nov 16th. His concern is post op life/diet changes

Hello @maggieflorida,

I can understand your husband's post-surgery concerns. I'd like to invite @kim1965 to this discussion as his wife had this surgery (not robotic) this year. I'd also like to invite @vmchow and @pavlina60 to this discussion. I'm guessing that the eating plan will be about the same. Small frequent meals that are light (not high in fat, etc.)

I have personally had three surgeries of the duodenal bulb and the light meals worked best for me. I had well-meaning friends bring me salads, cream-based casseroles after my surgery, however, the broth-based soups (especially chicken) were the best. The heavier foods I mentioned caused nausea and or diarrhea.

Basically, a low residue diet is very helpful for several weeks after the surgery. I'm sure his doctor will give him some advice, however, asking for a registered dietician to visit him before discharge from the hospital is a tremendous idea. There should be no problem getting a referral to a hospital dietician before he is discharged. If you can be present for that consult, it would be most helpful to you as well.

Walking is a very good thing to do post-surgery. It keeps keep the digestive tract moving and is beneficial in many ways.

Does he have a NET specialist?

Hello @maggieflorida,
My wife had a mass on the tail of pancreas removed 3/2023, along with speen, gailbladder, and debulked as many tumors as they could get. Kim was a type 2 dietabetic before the surgery in March, and we were told she probably become a type 1 dietabetic after the surgery. I confer with Teresa, regarding the walking after surgery. Possibly the best thing you can do, and seems like it would be not the ideal thing to do, but the more you do the better you will feel, at least in our case, and many on this site will agree. Even the day of surgery, she walked about 50 yards up/down the hallway, and felt so much better. The days after the surgery, progressed to multiple laps around our floor. Regarding diet, you will progress as you can tolerate, from ice chips, to clear liquid, to soft food, and so on. You will have a special diet while in the hospital, so your choices will be limited, just get what your comfortable with. We didn't have to request a dietician, they came to see us the day of surgery, to lay out the plan that day and when we left the hospital after 5 days. Good luck with your husband's surgery and let us know if you have any other questions. We are all on the same team. We got this.

Thank you very much for your reply. I so appreciate any info that will me provide the help he’ll need after surgery.

I think it really depends on how much of the pancreas needs to be removed. You mentioned very very small lessons on both the trail and the body? Actually I'm surprised they are operating on such small lesions. I had a 2 cm net in the tail. I had a spleen saving distal pancreatomy done by open surgery, not robotic. It's been 4 months now. Except for being tired, having lost about 7 pounds, I'm actually in pretty good shape. Even at 65, i still take the stairs and I'm choosing NOT to slow down too much. If your husband is going into surgery relatively fit, movement will be key to his recovery. Yes, i walked every hour on the hour for a full week in hospital. I started eating apples, peanut butter and honey by the 3rd day. The rest is history. I'm very blessed, no debilitating digestion issues. I'm back to Thai food and even a small glass of wine occasionally. I hear that things can change even at this stage, diabetes in particular. But for now, at this moment, surgery was an excellent choice for a cure, and an entirely bearable experience. I know there are horror stories out there. I'm not one of them🙏. Keep positive and best of luck.