Is enucleation appropriate for me?

I have made changes with my lifestyle and haven't had any gastritis or abdominal pain since August 2023. At the moment, I have no treatments since I don't really have any symptoms.

I am not positive what is considered low-grade. I do know it is stage one. Last scan it was 1.7cm. It is well defined. Ki67< 3%. located on the head of the pancreas . Non-functioning.

If there was a surgeon at MAYO who would consider Enucleation of this tumor I would have it done there.

The reason I say that is I have been seen by a surgeon here and was told she would not do it because of it being g to close to the duct.

I am scheduled for another CTscan March 12 and appointment with my specialist here. At that appointment I am asking that all records be sent to MAYO to request a second opinion as to wether Enucleation is an option.

I also have questions concerning what other treatment options can be used while I am in the "Wait and Watch" phase of this tumor.

Thank you for your concern and time. I am looking forward to March 12 and learning more going forward.

Yesterday I had a 3 month follow up scheduled to see the NET specialist in St. Louis Mo.
Had blood work and scan done prior to the visit. Then a meeting with his nurse practitioner instead of him. I was told the tumor was stable and has not grown. Though the first report had it measured at 1.8cm and the newest report showed 1.9. This was explained as that is because it was measured by different people . 3 months past the surgeon talked of doing the Whipple Procedure only. After talking to the surgeon I learned of Enucleation and contacted her back asking why that had not been mentioned . She wrote back saying the tumor was too close to the duct. I mentioned this to the nurse practitioner and he told me no surgeon does the Enucleation Procedure here.
The plan going forward is to continue wait and watch. I am scheduled to repeat the scan and consultation in 6 months.
I collected all my scans and reports and mailed them off this morning for a second opinion from surgeons and PNET specialist at MAYO.
Just trying to cover all the bases .

Hello @charliepnet

You are proceeding in a good direction. I'm glad that you are asking questions and continuing to seek a second opinion at Mayo Clinic. It is important to, as you said, "cover all the bases."

I look forward to hearing from you again. Do you have an appointment scheduled with a Mayo doctor?

A team at MAYO have looked at my scans and test results I have sent them concerning a NET on the head of my pancreas. The NET, according to what I have learned qualifies for Enucleation except that I am not able to know if it is to close to the duct which would disqualify it for Enuc. If the team tells me they can perform Enuc what do I need to know before agreeing to it. By walking through the door that includes Enuc what other door am I closing?
I have, as far as we know, only one PNET.
It’s on the head of my pancreas.
It’s less than 1.9cm
It’s well defined.
It’s non functioning
It has a Ki67 < 3%
I have no symptoms. This was an incidental finding on a scan for something else.
Naturally we all want to choose the path that will cause us the least amount of problems and that is all I am trying to figure out.
Thank you for any thoughts or experiences on this.
I get that no one situation is the same as the other.

@charliepnet, you are asking very wise questions. When will you be meeting with the Mayo team to ask your questions and to learn more about the risks and benefits of enucleation for you?

I have an appointment on April 17 with a NP and then Surgeon. They would not tell me on the phone wether they want to talk about Enucleation or the Whipple procedure.

I so appreciate your update, @charliepnet. I feel sure that you will get helpful information about the type of treatment that is best for you, and you will undoubtedly understand the reason behind their recommendation. I look forward to hearing from you after your appointment.

In the meantime, are there any other questions or concerns you have?