Looking at the other side of the issue, not having a PET scan done when I was diagnosed in June 2012 saved my life. Had a PET scan been performed by my Whipple done within 2.5 days of diagnosis, I would not be a 12.5 year survivor of stage IV metastatic disease to the liver.

Surgery was quickly scheduled because the CT showed the tumor was very close to the portal vein giving the surgeons a very small window of opportunity. When I was opened on the table, it was observed the tumor was in contact with the portal vein requiring it be resected along with the Whipple procedure. Surgical pathology showed the tumor had penetrated the vascular wall and had been seeding my liver with metastatic cells. The micrometastatic disease in the liver was below the detection threshold of a CT and was detected seven days later on a post-surgical CT.

Had the micrometastatic disease to the liver been detected had a PET scan occurred, the Whipple and portal vein resection would not have occurred. Care team members estimated death would have resulted within 12 months from the portal vein becoming occluded, varices forming to carry blood around that point and eventually hemorrhaging to death as the varices can not handle the higher pressure that the portal vein can.

I would not have gotten the personal treatment required to save my life. The prevailing attitude would have been stage IV, no surgery, treat according to decision of the tumor board based on established protocols. I often think of the saying, “Be careful what you wish for, because you might just get it”