Just diagnosed with pancreatic NET stage 1

I have a 6.6mm net on the tail of my pancreas. They have been watching it for 1.5 yrs. The symptoms are not good, flushing, itching,feeling full and hungry at the same time. Noone wants to talk. They found a thymic cysts on my mediastinum and removed it. Thank God it was benign. I really can't stand the waiting

As I’m reading the previous posts, I’m learning that I have yet so much to learn about this. I’m doing will with it emotionally. The surgeon wants to do a PET scan before talking course of treatment.

1. I have other issues and wondering if it’s all tied.
2. What kind of treatments are usually presented?
3. Do you have surgeon recommendation in the DC, Maryland and Virginia area?

Hi @bellom, welcome. I moved your post to this existing discussion:
- Just diagnosed with pancreatic NET stage 1 https://connect.mayoclinic.org/discussion/just-diagnosed-with-pancreatic-net-stage-1/

I did this so you can read previous posts and connect easily with other members living with pancreatic NETs like @meleelee1 @lizzyeastwood @elm60 @terry998 @pavlina60 @jodaface02 @bridget1980 @smt and many others.

MB, I look forward to learning more about you. What treatment have you had? How are you doing today?

<p>PNET, UTERINE FIBROIDS & BRAIN LESIONS</p><p>Created by a 38 year old with a very small PNET that they found in May 2023.</p>

I had a very similar diagnosis in 2019, pnet incidentally found on a ct scan that was ordered for colon issues. I had a distal pancreatectomy in February of 2020. Tumor was well defined, 2.5 cm, nonfunctioning ki 67 >2 . Surrounding lymph nodes were clear. Surgeon managed to save my spleen. I have scans every 6 months but no recurrence of tumor. I have had no other treatments than the ct scans.
I know it’s terribly frightening at first but it gets better. Post surgery I’m feeling well. I have gastro issues frequently, but I mostly feel very lucky that the first scan was ordered and the tumor was found early.

Hello @kellietg23,

As it has been a while since you last posted, I was wondering how you are feeling since your surgery.

By now, you've probably followed up with your surgeon. I hope that went well. Are there any follow up treatments or scans planned?

I look forward to hearing from you again.

I understand how you feel. My net is also on the tail. Mine net is smaller at 6mm. They have been watching mine for a year now. I am tired of waiting. I have a cough, pain, bloating, chills, flushing. . . I have no one that wants to talk about it. I think being bewildered is part of it.

Keep posting as you have questions or concerns, @keisham808. Wishing you the best possible outcome when you have your biopsy in June.

Small steps - one at at a time!

Thank you 💜💜. I just came from the doctor and he removed the abdominal drain. That has helped with pain relief