Is enucleation appropriate for me?

My tumor is on the head of my pancreas. It is well defined, l.7 cm. Non functioning, Ki67< 3%. I do not know how far from the pancreatic duct.

The surgeon I saw talked only of doing the Whipple procedure. However she concluded we should wait and watch it for now. Said I should see her again in a Year.

I returned to the PNET specialist who agreed but said he would see me in 3 months not a year. I see him March 18 at that time there will be another scan done to determine if the tumor has changed in any way.

Since the visit with the surgeon I learned of Enucliation . I wrote the surgeon and asked why Enucliation was not mentioned to me and would I be a candidate for it. She wrote back, saying no that the tumor was too close to the duct.

After my next visit and a new scan is done I would like to send all my info to MAYO hoping to get another opinion from a PNET surgeon there as to wether enucleation is an option!

A couple weeks after the incidental find of the PNET I learned I had Prostate cancer. The prostate was surgically removed January 18. All went well and I am recovering from that.

I just want to be sure enucleation is out of the question . The Whipple procedure scares me.

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.

Hello @charliepnet,

I really admire the steps you are taking to ensure that you are getting the best possible treatment for your PNET. Your research, follow-up and seeking second opinions are good ways to approach your concerns.

As you are seeking another opinion at Mayo Clinic, I wanted to provide you with a link to appointment information for all three of Mayo's locations. Mayo Clinic has NET specialists at all three campuses. Here is the link, http://mayocl.in/1mtmR63.

I would also like to invite you to a NETs support group meeting, which will be on Thursday, March 7, via Zoom, from 5:30 to 7 p.m. EST. You must register in advance in order to obtain the Zoom link. Please click the link below to register:
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf
After registering, you will receive a confirmation email containing information about joining the meeting.
Location: Zoom online meeting
Contact: Loriell Grossling, LCSW; grossling.loriell@mayo.edu

This month the meeting will be Round Table, which means that everyone who is in attendance will have the opportunity to share their experiences and to ask questions of each other.

I look forward to hearing from you again as you look for answers. Will you continue to share on Connect as you think about the options available to you for follow-up?

Thank you for your time. I have already registered for the webinar . Hoping to get more knowledge .
I am thinking it best to wait until the newest scan on March 12 and then contact someone at MAYO or do you feel I should contact someone before.
I do feel that as this goes forward I will continue to this sight .

The same thing was said to me. I have a 5-7mm tumor on the head uncinate of my pancreas. They are scanning it every six months to monitor. When I asked the doctor about enucleation, she said it doesn't have a high success rate. I think she is just not able to do the procedure. So I went to get a second opinion from NIH. They said the same thing. The location makes it tricky for the enucleation procedure, although not impossible.

Right now, we are determining whether it's a functional or non-functional--meaning, is it affecting my hormones.

Hi @charliepnet,

As your next scan will be on March 12, you could wait before scheduling a Mayo appointment. However, as it may take a while before a Mayo appointment becomes available, it would be fine to start the process as soon as you are comfortable doing so. The results of the March 12 scan should be available by the time you have your Mayo appointment. The timing is certainly up to you.

I look forward to continuing to get updates from you.

Sorry you are going through this also.
I read also that there is a lower success rate with Enucliation .
I read too that sometimes the surgeon will start with enucleation but have to convert to the Whipple procedure because of problems.
My feeling on this is that I would the Enucliation as a first choice. With the thought being if the PNET persisted the Whipple procedure could still be done later. I don’t know if I am correct on that assumption though.
Maybe there are even other options that I will learn about with my next visit on the 12th.
The Whipple is just such an invasive procedure I hope to exhaust all other options within reason.
Best of luck to you as you move forward.

Wow. Didn’t expect to get a reply this fast. Thank you.
Do you know if I send my records when I get the next scan if the first contact could be virtual.

The same thing was said to me. I have a 5-7mm tumor on the head uncinate of my pancreas. They are scanning it every six months to monitor. When I asked the doctor about enucleation, she said it doesn't have a high success rate. I think she is just not able to do the procedure. So I went to get a second opinion from NIH. They said the same thing. The location makes it tricky for the enucleation procedure, although not impossible.

Right now, we are determining whether it's a functional or non-functional--meaning, is it affecting my hormones.