After a whipple operation to remove a neuroendocrine tumor in the head of the pancreas in sept. 2003, A recent CT, MRI, and octrioscan has revealed 5 suspect tumors in the liver.With this information,I have just traveled to Uppsala University in Sweden where I met with the world experts in this cancer. I have had a complete workup where I went on their PET scan which is the ONLY one in the world that detects very small neuroendocrine tumors until later this year when Mt. Saini medical center starts clinical trials in NYC!
They have discovered 10 new small mets to the right lobe of my liver and have measured my Ki67 (proliferation rate) on the original tumor to be from 3-4% to 15%in hot spots and in the new liver metastases 10%-20% in hot spots.
Professor Barbaro Eriksson has recomended that I have a right hemi-hepatectomy and 1 month post -op start courses of cisplatin plus etoposide for 6-12 months. As I have a high proliferation capacity. Most neuro endocrine cancers have a proliferation capacity of 5% or less to my understanding. This is why it is so important to have it measured by Ki67!
Needles to say, I am wondering if there is anyone out there who has had this surgery and or this type of chemo and if you would be willing to share your experience with me?