NET - Insulinoma

@peeti. I had an insulinoma removed from pancreatic tail in Nov 2018. Dr. McKenzie and Dr. Thompson also took my spleen and part of my stomach. It was done laparoscopically. I was at St. Mary’s for 2 nights. Unfortunately developed a pancreatic leak and then DVT and PEs, so after 3 hospitalization had a total of 12 nights at St. Mary’s. Life without the tumor has been so much better. I’m happy they found your tumor. Get it out and move forward.

When I had my tumor removed, there was no talk about any other surgery than open. My tumor was at the head near the pancreatic duct. They removed and checked the margins to make sure they had it all. I think on second day of post surgery I sat up in bed, then slow walking the hallways.
I wish you all the best, just think about how great it’s going to be with the tumor out. I never realized how bad my life was with it because I learned to live with it. It’s really so nice. Some day soon this becomes a distant memory. Truly

Good morning!
Good to hear from you! I am so glad for you they were able to locate the tumor. I know what a relief that is :)!
Dr. McKenzie is wonderful. He was my surgeon as well. He explains things very well and has a great bedside manner. The list of questions you mentioned are certainly good to ask. Other questions I can think of - will you have drain(s) post op? pain control options (I had an epidural but I also had my spleen and part of my pancreas removed)? Can the procedure be done laproscopically or is it open? With COVID - visitor restrictions?
As for the location of my tumor - I had 9 tumors removed and not all of them were on the surface. I also had a distal pancreatectomy.
So glad you have had a great experience so far. Dr. Vella and Dr. MacKenzie are both great physicians! I will return in April to see both of them as I continue to have hypoglycemia and at least one tumor that is hiding from view. Take care and best wishes. Please let me know if you have additional questions.

@marilyn2525 Thank you for sharing your experience dealing with Insulinoma! You have been super helpful.

I did read all your posts and know that you also had tumor on the head of pancreas. Was it on the surface? Considering you had to stay for 9 days post op, I am wondering what’s going to be in my case. I left my kids at my sisters place and constantly thinking how I am going to plan everything with both me and my husband are here at Mayo. I am really hoping and praying that they can remove the tumor with less invasive laparoscopic surgery.

Thank you so much @hopeful33250 ! Yes, I will post an update after the appointment today.

Hello @preeti,
I'm so glad to hear that you made it to your Mayo appointment. I'm especially glad to hear that they found the tumor. It is a good thing to try and determine what questions should be asked when you meet with the surgeon. I'd like to tag the others who have responded to you in the past as they will probably be able to assist you with that.

Hello @marilyn2525 and @ahtaylor
Can you give @preeti some suggestions as to good questions for the surgeon when they meet?

@preeti, I'm looking forward to hearing from you again before your sugery. Will you post an update after your appointment?

Good morning!

I came here at Mayo this week to treat insulinoma. They postponed my January appointment to this week due to Covid. Based on CT scan done yesterday, Dr Vella mentioned that the tumor is on the surface of the head of pancreas. I am so relieved that finally the tumor has been located as back in NJ, both CT and EUS did not reveal it. I may see Dr. Mckenzie today to discuss surgery options. I am putting together list of questions to ask to go over with the doctor such as - type of surgery, length of stay at the hospital, post op precautions, etc.

I would really appreciate if you can suggest anything that I should go over with the surgeon. Also did any of you go through surgery where tumor was found on the surface of pancreas head? Pls can you share your experience.

Getting a bit anxious! Will post updates here. Thank you all!

Preeti, call your Mayo Dr. ask the secretary of your Dr if they would please schedule your possible CT & EUS to be done the day after or as close to 72 fast so that you dont have to fly back. My Dr had her team make as many appts around the time I was there. But I can tell you that after the 72 hr fast, I went home and they scheduled the CT, EUS & surgery to be done all in that trip. They are wonderful about getting as much done as possible. they even moved appts up when they could and I didn’t ask.

I so appreciate your update, @preeti. I'm glad to hear that you will be seen at Mayo. Mayo has some exceptional people at their facility who work with insulinoma tumors. I hope that yours can be easily located and treated.

Will you post an update as your appointment gets closer? Any of us on this forum would be happy to offer you suggestions and support as you continue with this process!

@hopeful33250, @marilyn2525, @ahtaylor, thank you so much for your response. It certainly helped me make a decision and I plan to keep my appointment and will visit Mayo next month. They have scheduled for blood work, consultation appointment with Dr. Vella, and 72 hours fast test. I really hope that they can conduct further tests (CT, EUS) to locate tumor(s) while I am there.

@marilyn2525 - thank you for another detail reply! You have been extremely helpful! I am really glad that your health has significantly improved with the care you received at Mayo.

@ahtaylor - I booked the air travel. Thank you for the suggestion on accommodation. I will soon make those arrangements.

Fingers crossed that everything goes well! Like many of you, I have been suffering for a long time and really looking forward to treat the Insulinoma at Mayo.