Steve Jobs’ illness it’s vital to be clear about one thing – he did not have pancreatic cancer he “had what is called a neuroendocrine tumor, more specifically an insulinoma.” Not just my opinion, but that of University of Chicago Medical Center Transplant Center, J. Michael Millis, who was quoted in an article about Jobs in Scientific American.
If treated appropriately and in time, most people won’t die from the cancer itself. In my series of patients, for many subtypes, the survival rate was as high as 100% over a decade.
Neuroendocrine tumors caught in time can be treated just by surgically removing the tumor.
This is a relatively low-risk treatment that — especially compared to chemo and radiation — has negligible disadvantages. In many cases, a simple enucleation (just cutting out the tumor with a safe margin around it) is enough and leaves no residual side-effects.
While Jobs probably did not help himself by waiting nine months between diagnosis and surgery, it can often take years before neuroendocrine tumors are diagnosed even when symptoms of “active” tumors are present, (see the Journal of the National Cancer Institute 9/17 2008) so the ultimate effect of the delay in treatment on his survival is academic. The one thing that is absolutely clear about his case is that when his surgeons told him that they “got it all” in 2004, they were wrong. This monumentally bad advice is not unusual among those with neuroendocrine tumors. I know dozens of others who have been given the same erroneous post-surgical assessment.
What we are unlikely to know is whether the surgeons who operated on Mr. Jobs performed a simple test (called KI-67) on the tissue they removed, it would have told them – and presumably Jobs – how aggressive his tumor was. While Mr. Jobs was clear that no chemo or radiation was required after his first surgery, it is unclear what if any follow-up monitoring – blood tests – scans Mr. Jobs was advised to undergo. As someone who has been fighting a neuroendocrine tumor since 1999, I know that monitoring the progress of my disease has been crucial to combatting it and has helped me survive for over 12 years. In that light, Jobs’ delay in treatment before he had surgery might not have had as great an impact on his health as what he was apparently advised to do and more importantly, not to do, by his doctors after he was operated on.