Hello everyone. My 27-year old son was diagnosed with advanced stage III acinar cell carcinoma. His tumor is outside of the pancreas extending from the tail and rather large. Until the final diagnosis via biopsy and laparoscopy, they went back and forth trying to decide if it was a rare pancreatic cancer or a rare stomach cancer. The first week of July 2025 he was finally diagnosed at Mayo Clinic, Rochester. We are so thankful for this team we have there.

When we were going over options at the beginning, surgery was not an option due to the size and location. The only true option at that time was chemotherapy/immunotherapy in hopes to shrink the tumor since it was taking up his stomach and pushing on his liver and other organs. He started the strongest chemotherapy FOLFIRINOX July 18th. He has had 9 treatments and his tumor has reduced significantly and now surgery is an option!! He is scheduled for an extended distal pancreatectomy, splenectomy, and cholecystectomy. Possible total. It is my understanding that because his tumor is outside of the pancreas and comes out from the tail rather than the head this is why the Whipple is not being considered an option.

I am wondering if there is anyone else my son's age or around 30 or under has been diagnosed with the same rare pancreatic cancer in this group and if so, how are you doing and what treatments did you get.