Dear Mike

I was diagnosed with PNET on my pancreas on March 21, 2023. My PNET is 1.7 cm. Some NETs can be aggressive. I got help for the Pancreatic Action Network (www.pancan.org). I would check with the American Cancer Society at http://www.cancer.org. PANCAN provided me with a significant amount of information on my tumor. They also provided me with a list of doctors (oncologist, surgeons, radiologists etc) that specialize in high volume treatment of PNETs. I am told that NETs are a specialized kind of cancer and it is recommended that you find a specialist who treats and diagnoses this type of cancer.

My PNET was found when I was having a routine CT scan in by belly in late January 2023. After an MRI, Endoscopy Ultrasound and PET CT scan, I was confirmed to have a PNET that is in its early stages, it is well differentiated and localized in my pancreas. I live in New Mexico and I went to the Mayo Clinic in Scottsdale/Phoenix. The Mayo ran these tests within two months of my initial CT Scan. In New Mexico, I couldn't get in to see a GI doctor for at least 3 months. I didn't want to wait and I'm glad I didn't. I have peace of mind and treatment plan.

My oncologist is very good and specializes in PNETs as well as my surgeon. Both of them are at the Mayo Clinic. They devised a wait and watch treatment plan for me for about six months. Then I will retest. My doctors tell me that a PNET is a rare form of pancreatic cancer that is very slow growing. If I have to have surgery, my surgeon is very experienced. She performs 4-5 or more of these surgical procedures a month.

I would recommend that you see a specialist in a high volume Cancer facility like the Cleveland Clinic, Mayo Clinic or somewhere similar and get a diagnosis. Good luck.

Fabian