Need more information on NET in head of pancreas

@htam4, Hello!
My tumor was in the tail of the pancreas entangled with the spleen, so I had that removed as well. My experience has been - if you have the spleen removed you will need more vaccines ( before the surgery, and then after).
2. Only a NET oncologist can answer that. I have liver metastases, which are followed by CT scans every 3 months
3. I became diaberic after NET, because my pancreas (what was left of it) produces very little insulin, and also the chemo drug I am on ( Somatuline) has blood sugar elevation as a side effect. I am not on medications for diabetes yet, but I can see it coming ...
4. I live in Syracuse, NY. We have a strong Cancer Center and the surgeon who did my operation does robotic surgery now ( Whipple) if the tumor allows. I highly recommend him Dr.Mashaal Dhir- very knowleadgeable, capable and caring!! Good luck! We are strong! 💜🦓

I’m sorry you’re going through this. Everyone’s surgical experience and outcome is unique so it’s difficult to tell you how you will recover and how you’ll feel. A lot depends on how the surgery is performed. Fully open, arthroscopic; enucleation (kind of like taking it out like a melon baller) versus more cutting, etc.
In order to get your questions answered and ensure the best outcome you need to see a net specialist. This is crucial. And you have one of the top net specialists in the country in New York in Edward Wolin.
https://profiles.mountsinai.org/edward-wolin
He treated my husband when he was in Los Angeles and saved his life 16 years ago.

You also should educate yourself as much as possible in this disease so you can be your own strongest advocate. You can begin to learn about this disease from sites such as
http://www.netcancerawareness.org

or

http://www.netrf.org

Best of luck to you!

I would suggest Memorial Sloan Kettering. My surgeon was Dr Michael D’Angelica. My tumor was on the tail. The team at MSK have a number of highly successful doctors who perform over 300 pancreatic surgeries per year. Wishing you all the best.

@pamsbass
Hello, I am the wife of someone who was diagnosed 2 years ago with an NET on the pancreas head at 43yo. With small liver lesions as well with just watching it/then the last two years. It has now grown to 2.5cm and He’s being sent for more lab work and and a PET scan with follow up to talk about surgery. We were told in the beginning that if it grew to cause problems an needed surgery he would need a whipple. What made yours a modified whipple. I did some research two years ago but I’m anxious currently since the “news” is new again. Thinking we wouldn’t need surgery hopefully ever. Is there anything I should particularly remember to ask?

@jchady01, welcome. I'm tagging @tomrennie on this discussion as he may have some thoughts and experiences to share with you.

How is your husband doing? Will he be scheduled for surgery?

@jchady01 Here is an explanation of the Whipple procedure:
https://www.mayoclinic.org/tests-procedures/whipple-procedure/about/pac-20385054
I believe that the modified Whipple preserves the stomach. I have a PNET in the body and the tail of my pancreas, so I don't qualify for a Whipple. I also have lesions on my liver. Considering the Whipple does not address the liver, I would ask what the method of treating it would be. I am hoping others that have had the Whipple might share.

Hello @jchady01,.

I would like to join @colleenyoung and @tomrennie in welcoming you to the NETs support group. I see from your last sentence that you asked whether there is anything in particular you should ask about this procedure. This is a great question! Here are some suggestions: First, I would read the information @tomrennie provided about the Whipple procedure. Then make a list of questions that occur.
On Connect, we have a discussion group called: Keys to a Successful Doctor's Appointment
Here is the link to that conversation with a video:
https://connect.mayoclinic.org/discussion/keys-to-a-successful-doctors-appointment/
In that discussion group, there is an article by a medical oncologist, Karthik Giridhar, M.D, who says the following: “ I love working with engaged patients. Patients that want to make sure that they're understanding why we're doing what we're recommending." Here is a link to her comment: https://connect.mayoclinic.org/comment/1053073/

I would encourage you to familiarize yourself with the Whipple procedure by reading about it, so you feel ready to ask questions. Here is a link with posts by others in the NETs group who have had a Whipple; these posts might help you develop your list of questions. https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

I hope that all goes well for your husband. Will you post again with any questions, concerns, or updates?