Hi I was diagnosed stage 4 inoperable due to the same issue as you. I apparently did have a tube spot in my liver which they can no longer see. Most cancer centers are NOT pancreatic cancer centers. I started off at the cleveland clinic and felt I got “standard care and they just went thru the motions. If u can afford the travel, and are healthy enough, contact Mayo, MD Anderson, John Hopkins or Memorial Sloan Kettering to at least keep your local oncologist up to date. You really have to do all the foot work urself. I initially went to JH for a second opinion since they were the closest to me (4 hr drive) and I still contact them with chemo or treatment questions. I contacted Dr Truty at Mayo because he sounded more aggressive with surgery and I had hoped he would say I was eligible. He confirmed ( by phone-I did not need to go there. I just sent all my scans) that I was inoperable but suggested radiation, pet scan and restaging since they could no longer see evidence in my liver. I looked through journal articles for radiation options and found Dr Crane at MSK does a MRI guided approach that sounded very successful for cases like mine. Left a message and set up a FaceTime appointment to discuss. I will be going there next month to have him perform the radiation treatment since he pioneered this approach and not many are trained to do this.

It’s frustrating that you have to constantly look into options. This site is so helpful to reach out to others. Don’t give up! Keep asking questions.

Best wishes

Jump to this post