I was diagnosed with non-functioning islet cell cancer (in the pancreas) September 2006. They did a whipple surgery, and then 4 days later had to go back in and do a bowel resection due to complications. They, 4 days after that, they had to go in again and repair a whole in the bowel. I ended up with an illeostomy, which was reversed in February 2007. I had a PET scan done a while later, and everything was clean. Then, just this March, I had another PET scan, and it showed spots on my liver. They unsuccessfully did a CT guided needle liver biopsy, then chose to do a liver resection, as well as repair a huge hernia I had from all the previous surgeries. They could only remove one of the larger spots. I go in tomorrow to have another CT done to see if my liver and the spots are still in the same place, and if they are, we are going to do a radio frequency ablasion. Has anyone had one of these done, or know anything about them? And has anyone gone thru all this crap, or have this cancer? It's hard to find out information about it that makes sense.
I feel like I'm completely losing my mind. Any help would be wonderful. Thank you for allowing me to drag on.
You are not alone. My husband also has non-functioning islet cell cancer. He had the first tumor removed in 2004. The following year it spead to his liver and he had a liver resection. His CT's were clear for 2 years, then in the fall of 2007 we learned he had another tumor on his liver. It was too large for RFA so he had a new procedure called Y-90 in March 2008. The CT scan at 3 months showed the tumor has shrunk dramatically, probably to 1/5 of the original size. We are very encouraged with this new procedure. He has not had to have RFA but we are encouraged that between RFA and Y-90, his cancer can be managed for years to come.
It is frustrating because the cancer is so rare and no one knows about it and there is not a lot of information out there. But don't ever give up hope.
