Hello, thank you for reaching out. This is gonna be long, so I apologize in advance.
Yes, I have a recently diagnosed PNet on the tail of the pancreas, towards the body. I found it incidentally about a year ago when I went to an urgent care due to stomach pain unrelated to the tumor. A CT scan done at the Urgent Care saw a "cyst" on the pancreas and they recommended I see a specialist and have a pancreatic protocol MRI done. I had to wait almost 3 months to get an appointment with a specialist and when I went in, he dismissed my concerns and said it was nothing to worry about. That was in Feb. 2023
I left the office with a bad feeling, scheduled an appt with my PCP but he was not available until July 14th. I was getting ready to get married on June 11th, so I archived it in the back of my mind until I could see the doctor. I had no symptoms. Fast fwd to July 14 2023, my GP was appalled that the specialist did nothing. He requested the MRI stat, as well as a CA-19 blood test, which was slightly elevated at 37. By luck, my husband has a work contact at Cancer Specialists of North Florida, and she was able to help us get the MRI done and scheduled with an Oncologist.
Between now and then, I have had a biopsy via endoscopy, that confirmed a 1.2cm PNet on tail of pancreas. Well differentiated, stage 1, non functional. I did a Gallium 68 Pet scan and it confirmed the tumor has not spread.
I spoke with multiple doctors, surgeons and Pnet specialists until I got to see someone at Mayo in Jacksonville. Dr Stauffer recommended what all the other doctors had already said - we could watch and wait, however, I am 41 years old, healthy, normal weight, no other health issues. I opted to have surgery to have it removed before it has a chance to spread. Surgery is scheduled for October 13th (Friday, the surgeon was widely available!!). From what I understand, it will be laparoscopic distal, removing tail of pancreas, spleen and any lymph nodes around it.
I am terrified of surgery but the watch and wait approach would not work for me. I have terrible anxiety and my mental health has been a mess since July.
You can imagine we have been a mess, my poor husband having to deal with all this with me within a month of being married. He is very supportive, I don't know what I would do without him right now.
I am looking for others with a similar experience, just to ease my anxiety towards surgery, recovery, what to expect. I am thankful to have found this resource. Thanks for reading!