What Killed Steve Jobs? A Cancer That's Poorly Understood In the United States

Questions about the death of Steve Jobs have spurred lurid speculation with headlines like "Harvard Cancer Expert: Steve Jobs Probably Doomed Himself With Alternative Medicine." This almost inevitable internet yammering is based on the revelation in Walter Issacsons' biography that Apple's founder put off cancer surgery for nine months while he pursued "natural remedies." Issacson furthered the speculation with his opinion that "had they operated nine months earlier, they might have caught it before it spread, though they would never know for sure." It is a fitting time to quash such ill-informed conjecture, because November 10 is Worldwide NET Cancer Awareness Day, and it's happening in the shadow of the loss of perhaps the most famous person who will likely ever have a neuroendocrine tumor ("NET").

NETs are so rare and so commonly misunderstood that it was easier for most news organizations to describe Mr. Jobs' illness as "pancreatic cancer" simply because that's where his primary tumor was located, even though at least one medical expert tried to correct the error in the Scientific American it did nothing to stem the tide of media misinformation. Jobs' Islet Cell NET had much more in common with mine (which originated in my small intestine) and those that begin in other organs like the lungs, than it did with metastatic adenocarcinoma of the pancreas, which is what people think of when they hear or read the dread words "pancreatic cancer."

As someone fighting against my own NET for more than a decade, and as a patient advocate for NET awareness, I think the far more salient question to ask is whether Steve Jobs received the most knowledgeable advice once he was diagnosed, because NETs are widely misunderstood by most medical practitioners. The treatment James A Garfield received after he was shot, as detailed in Candice Millard's "Destiny of the Republic," portrays a chilling example of the kind of willful medical ignorance that still hinders the care and treatment of NET patients today. As the new president, only four months into his term, lay wounded, no expense or effort was spared (Alexander Graham Bell even developed the first functioning metal detector) to find and remove the assassin's bullet lodged in his body. There was only one problem, none of the team of doctors attending Garfield, one of them an experienced battlefield surgeon, believed in the germ theory of disease transmission or the antisepsis regime developed by Joseph Lister to combat it. So they repeatedly probed the president's wound with their bare hands and unsterilized instruments, contributing to, if not causing his death from massive infections.

The mindset against antisepsis was best exemplified in the opinion of Charles Meigs one of the most prominent obstetricians of his time who said: "Doctors are gentlemen and a gentleman's hands are clean." Because NETs are so rare, most doctors never see or treat a patient with one. What this means in practical terms is that some NET patients are operated on and are told they've been cured and are sent home without any follow up monitoring, only to have the micro-metastases that were present at the time of surgery bloom and grow, unhindered by treatments that might have stopped or slowed their progress. On the other side, some patients with metastasized but treatable disease are told they will be dead within six months and are sent home without any treatment. These aren't urban myths, or something I read online - this, as we say when we NET patients share our histories in support groups and national meetings, is directly from the Zebra's mouth.

But the most startling display of the American medical community's pigheadedness is its failure to require biopsy material, and after surgery, tumor tissue to be subjected to Ki67 staining to determine its "proliferative activity" or in other words, how fast the tumor is likely to grow. This staining is the standard of treatment in Europe, but is up to a doctor's discretion in the United States (this parallels antiseptic practices which were also adopted in Europe first). Think about that for a minute, there's a test that can be performed at no harm to a patient and that test can tell the treating doctor how fast his patient's cancer is growing, but American doctors don't want to be required to perform it. I'm lucky, my doctor ordered Ki67 staining of tumor tissue removed during my surgery in 1999. It has helped guide every step of my treatment since, and even though I had very advanced disease when I was first diagnosed back then, I'm still here 12 years later.

This is not the only area where far too many American doctors and surgeons refuse to believe in the few hard-won science-based advances in the diagnosis and treatment of NETs. I see indications of this in the early treatment Jobs received, as described in Issacson's book, "[d]uring the [2004] operation the doctors found three liver metastases" that they apparently had not been aware of. If Jobs' doctors had employed an "octreoscan" to examine him before his surgery, as had been done for me before my surgery, there was an excellent chance that they not only would have known of the liver metastases before they operated, they would also likely have learned whether Jobs would respond to octreotide, one of the only treatments available to control the excess, debilitating, and sometimes life-shortening hormone production for which NETs are known. Not only could Jobs' surgeons have avoided being surprised by the presence of liver "mets" during his 2004 surgery they should not have been. Most NETs are diagnosed so late that more than half of them have already metastasized when they are discovered and NETs are known for spreading to the liver (see "Priorities for Improving the Management of Gastroenteropancreatic Neuroendocrine Tumors" in the Journal of the National Cancer Institute). The odds are that the tumors had already spread to Jobs' liver before his Islet Cell NET was discovered. The nine month delay before he had surgery probably didn't mean that much in the long run.

Like Alexander Graham Bell's use of a metal detector to find the bullet in James Garfield, Steve Jobs hoped to use the technology of sequencing the DNA of his tumors to "solve" his cancer problem. He expressed this hope to Walter Issacson, saying: "I'm either going to be one of the first to outrun a cancer like this, or I'm going to be one of the last to die from it." I will obviously benefit if Jobs proves to be correct, but until the day a cure for NETs is found, there is an equally daunting task of ending the ignorance in the day-to-day diagnosis and treatment of the hundreds of thousands people with NETs particularly in the United Sates. The NET patient slogan, "If you don't suspect it, you can't detect it" speaks to that ignorance. One way to bring about this desperately needed change would be to conduct an examination similar to the one that followed President Garfield's death. Lead by competent medical experts with full access to the doctors and institutions who treated Jobs, it could, as it did in Garfield's case bring about a break from an outmoded and unthinking past, and establish a new standard of treatment. Like the widespread adoption of antiseptic practices in America after the Garfield inquiry, all that is really required to improve the lives of people with NETs is for doctors to think differently. Isn't that a fitting legacy for Steve Jobs?