NET tumor of pancreas (1 cm) diagnosed

Hello @u20967 and welcome to the NETs support group on Mayo Connect. I see that your NET was discovered "incidentally." This is true for me as well as many others in the Connect NETs discussion groups. I'm glad you are continuing to question the surgeon's comments and plan of action. When dealing with cancer, and especially a rare form of cancer, it is important to advocate for ourselves. I would encourage you to learn as much as you can from the experience of others here on Connect.

As second opinions are important when dealing with cancer, my first suggestion would be to have at least one consultation with a NET specialist. These are oncologists with special training in the diagnosis and treatment of these rare cancers. NET specialists can be found at any of the three Mayo locations. If you would like to seek help from the Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona, and Florida can be found here http://mayocl.in/1mtmR63.

If you are unable to be seen at Mayo for any reason, here is a listing of NET specialists from the Carcinoid Cancer Foundation website. The specialists are listed by state and then by country, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

You were asking about enucleation. This would be a good question to ask when you seek a second opinion. In the meantime, here is a discussion on Connect about enucleation,
--Is enucleation appropriate for me?
https://connect.mayoclinic.org/discussion/is-enucleation-appropriate-for-me/
In this discussion, you will meet @tomrennie, @lindabees, and others. Feel free to post your questions and concerns.

How are you feeling, @u20967 ? Have you had any difficulty eating or any weight loss?

Thank you for all the information. I live in IL and all the net specials are in Chgo. St Louis MO is closer but I didn't see any listing for Mo. I plan on getting the biopsy and then try to get a 2nd opinion.

I am feeling perfectly fine. No symptoms at all.

Biggest question is what grade is it? Could have already been there for a long time. I’m with you I wouldn’t want a whipple either. However if it’s fast growing you are lucky they found it and removing it is the best thing before it spreads. Hopefully you can get all the information you need to make the right decision.

I thought enucleation referred to eye surgery. The terms I heard for pancreatic surgery were distal (which I had), central, Whipple and total.
If your NET is benign and non-functional they might decide that it doesn't pose a serious health risk and can just be watched for now. There is always the potential for it to become malignant and spread however.

I see that enucleation means removing the tumor without cutting into it. Probably mine was too far along so they did partial pancreatectomy as well as gall bladder, spleen and liver ablation. Even with all that I still have hypoglycemia episodes.

There is a fantastic NET specialist/surgeon in Naperville. Dr George Salti, affiliated with Edwards Hospital. He did my very successful cytoreductive/debulking surgery in 2024. There are also NETS specialists at Washington University School of Medicine/Barnes Hospital in St Louis. I’m waiting for an appointment to see Dr Trikalinos for a PRRT Lutathera referral.

Thank you for the info. I will look into Wash Univ.

As a patient, I would want to know how you tell it's NETs without a biopsy?

Dr says he can tell from the CT scan. I am going to get a biopsy to confirm and to get the grading so I know how fast it is growing. After the results am planning to get 2nd opinion from Mayo