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Neuroendocrine Tumor in pancreas head

Posted by htam4 @htam4, Jul 1 5:54pm

I posted before about I have 1.1 cm insulinoma tumor in my pancreas head. I am going to find a surgeon to remove it but I have some concerns:

1. Would I have any side effects or complications after the surgery ?

2. Would my tumor come back after surgery?

3. Will I become diabetes after surgery ?

4. I'm in New York, may I have any recommendation about the surgeon what you have great success with the doctor?

Thank you so much

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pavlina60 | @pavlina60 | Jul 2 8:05am

@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! 💜🦓

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lindabees | @lindabees | Jul 2 9:39am

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!

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yliddy | @yliddy | Jul 3 10:52am

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.

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