Who has had Distal Pancreatectomy and regretted it?

We did not have a choice with a mass on pancreas. Had to remove tail, spleen due to pancreas and spleen sharing veins, in addition gall bladder, and debulk liver lesions. She was diabetic before surgery so we were somewhat ready, for the challenges with balancing out her counts, you will have to take some form of insulin after this surgery. She didn’t really have a choice being stage 4, but now after 9 months chemo, surgery she has a great chance to live on decades. It was a good choice for us obviously.

Hello @billyfeet and welcome to the NETs discussion on Mayo Clinic Connect. I would like to introduce you to other members who have had this type of surgery, including @outlawcancer @kim1965 and @ahtaylor. I hope that they will share with you about their surgery experience.

What has your medical team explained to you about your surgery? Have they indicated what to expect after surgery or how long you would be in the hospital after surgery? What specific questions do you have?

Hi, I have been lurking on this site for a good long while. This is my first post as I felt compelled to share my experience Billyfeet

I had spleen sparing, laparoscopic, robotic, distal pancreatectomy on Jan09, of this year. (Non functioning,Well differentiated, Grade 1, Stage 3 , 2 cm tumor was found incidentally.)
I never had/still don’t have symptoms. Mine was a surprisingly easy recovery . I was up walking that same afternoon. (This was my experience only, and perhaps not typical.) I did not have any drains. I did not/do not require digestive enzymes. I am not diabetic at this point/ though I believe that is always a possible development. For myself, I honestly felt this was an easy procedure and recovery….again speaking only from my own personal experience. I know I was very fortunate, and others have not had it as easy.

I had tremendous worry about having this procedure. I worried about all the possible complications . Especially given that I had no symptoms from my tumor. I worried that the surgery might leave me feeling worse off. But that luckily was not my experience.
I am 58 yrs young, in decent shape with no other health issues. I still find it hard to believe that I have this cancer.And I forget that I even had surgery.(except for my 6 little scars) The whole process can be overwhelming and a scary burden to carry. I hope my experience can help alleviate a bit of your worry. God Bless!

I am glad your recovery was rapid and that you are doing well. Thank you for responding to my inquiry. I will be having surgery end of May. Hoping for the best…..

I had a very comprehensive consultation about my pathology findings and tumor location. We discussed the method of laparoscopic surgery with the possibility of having to revert to open procedure during process if needed. The doctor feels that she will not have to take too much of the pancreas to avoid causing diabetes. She will try and spare spleen but feels there is a good chance she will remove it. We have talked about doing gall bladder removal also because I have gall stones. The forecast is for 5 days in the hospital and 8 week recovery. I am a healthy, fit 69 year old man, no symptoms, tumor discovered by accident on unrelated CAT scan.

I am glad to hear about your comprehensive consultation, @billyfeet. I have had three surgeries of the upper digestive tract to remove NETs, however, there were never any symptoms. During my second surgery, my gallbladder was removed as well.

Your hospital stay sounds very similar to mine. Once you are discharged from the hospital, there will probably be a suggested eating plan. If not, you will feel better by eating smaller portions, several times a day. Without a gallbladder, you will probably feel better with low fat foods.

Will you keep asking questions and let us know how you are doing?

I am having this surgery in 2 weeks and feel better reading these posts and words of encouragement. It’s scary and a bit overwhelming to process at times but so thankful for options to deal with this condition. All of you are in my prayers 💜💜💜💜

Hello @michellesimpson10,

I am glad to hear that you are finding these posts to be helpful to you as you move forward with surgery. We have so many members who have also faced this surgery and they offer wonderful encouragement as their share their journey.

Prior to planning this surgery, have other treatment options been used or is surgery the option that was first suggested? Have you had any problems with your blood sugar?

This is my first treatment option for this condition. They said I could wait and see but I am not willing to let something grow inside me that will get worse. My dad was adopted and I only have half my medical history. Also I was stationed at Camp LeJeune
My blood sugars have been very high and uncontrolled for the last year and a half. I have a lot of stomach pain, dizziness, nausea and vomiting, pancreatitis, and abdominal swelling.

Given all of the symptoms that you mentioned, I'm sure you will be glad to have this surgery, @michellesimpson10.

Any idea on how long you will be hospitalized after the surgery?