Is enucleation appropriate for me?

Posted by charliepnet @charliepnet, Feb 27 3:04pm

Be diagnosed with, well-differentiated neuroendocrine tumor with Ki67 index < 3percent, 1.7cm in size, located on the head of my pancreas. Would this be a good candidate for enucleation?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

I’m sorry that you have to go through this. There are many factors other than size and general location that determine if surgery is an option. On its face, it would seem to me that if there are no metastases that surgery would be an excellent option, whether it’s enucleation or another method. Your best bet is to consult with a surgeon who is a net specialist in order to get the most reliable opinion. You can find specialists by state at

https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

Best of luck to you!

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Hello @charliepnet and welcome to the NETs support group on Mayo Connect. Your oncology surgeon would be the best one to determine the type of surgery you need. That said, often patients who have had surgery for PNET tend to have Whipple procedures or other treatments.

As mentioned by @lindabees are you currently being seen by a NET specialist? A NET specialist has the most knowledge about appropriate treatment plans. Mayo Clinic has NET specialists in each of their three locations. If you would like an in-person or virtual consult with a Mayo NET specialist here is a link to information to obtain an appointment,
http://mayocl.in/1mtmR63.

If an appointment with Mayo is not possible, for any reason, the Carcinoid Cancer Foundation has a listing of NET specialists throughout the world. Here is a link to that list, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

Has the enucleation been recommended to you?

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@hopeful33250

Hello @charliepnet and welcome to the NETs support group on Mayo Connect. Your oncology surgeon would be the best one to determine the type of surgery you need. That said, often patients who have had surgery for PNET tend to have Whipple procedures or other treatments.

As mentioned by @lindabees are you currently being seen by a NET specialist? A NET specialist has the most knowledge about appropriate treatment plans. Mayo Clinic has NET specialists in each of their three locations. If you would like an in-person or virtual consult with a Mayo NET specialist here is a link to information to obtain an appointment,
http://mayocl.in/1mtmR63.

If an appointment with Mayo is not possible, for any reason, the Carcinoid Cancer Foundation has a listing of NET specialists throughout the world. Here is a link to that list, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

Has the enucleation been recommended to you?

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I am seeing a NET specialist in St. Louis. He sent me to a surgeon. The surgeon said she would do the Whipple but for now wants to wait and watch. Suggested coming back in a year. The specialist agreed to wait and watch but wanted to see me in 3 months with new scan. That will happen March 12. Enucliation was not mentioned by them. I have gotten back to the surgeon and aske why not. She said the tumor was too close to the duct . I want to send these next results to MAYO and get a second opinion from a PNET surgeon. From what I have learned the tumor fits all criteria for Enucliation except the distance to the duct.

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@tomrennie

What is enucleation?

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Another option for removing the tumor. Best to research it rather than me explaining.

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@tomrennie

I did. It is eye surgery.

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Look into Enucleation of PNET. Not eye surgery! It is a procedure to remove the NET tumor from the Pancreas. Please understand that my situation concerns the Pancreas.

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How successful has the surgery been to remove PNETS? What is the criteria for PNET enucleation? Does your insurance cover it?

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I apologize but I am not qualified to answer these question . Please ask these questions to qualified professionals. Best of luck with your research.

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Here's some information about enucleation.
"Enucleation of pancreatic tumours is a less extensive surgical technique in which certain types of low-grade or benign pancreatic tumours are removed with a minimal margin of the healthy pancreatic tissue, thus preserving maximum healthy tissue for optimal functioning." https://www.sydneypancreaticcentre.com.au/enucleation-pancreatic-tumours-sydney-east-pancreatic-centre.html#:~:text=Enucleation%20of%20pancreatic%20tumours%20is,healthy%20tissue%20for%20optimal%20functioning.

Here are some details about clinical trials and pancreatic enucleation
https://www.mayo.edu/research/clinical-trials/tests-procedures/pancreatic-enucleation/

@charliepnet, is your tumor considered low-grade? Where are you considering enucleation?

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