Friday, October 28, 2011

Rare man, rare cancer

Steve Jobs was a rare man, and a rare case in terms of how he died. His death was announced as resulting from “complications of pancreatic cancer,” and yet it was actually neuroendocrine cancer that killed him. This distinction largely explains why he lived as long as he did after his initial diagnosis, and why his delay in seeking conventional therapy out of the box is less reckless than it might have appeared.
There is a vast complexity to cancer. It is dangerous to generalize about any form of it.  Garden variety pancreatic cancer has an exceedingly low survival rate, with fewer than 2% of patients living for more than five years after it has metastasized. Jobs managed to live for eight. That can mostly be credited to the rarity of his cancer, which grows more slowly and is easier to treat than typical cancer of the pancreas.

I didn’t know until I read an article in Scientific American that the pancreas is essentially two organs in one, which means two distinct kinds of tissue that give rise to two very different types of cancer. The most common kind of pancreatic cancer, the adenocarcinomas, originate in what is known as the exocrine portion of the pancreas, according to the article. This is the main mass of the organ, which makes digestive enzymes that get shuttled to the GI tract via specialized ducts.
Scattered in the larger organ are thousands of tiny islands of endocrine tissue, which make hormones that are secreted into the blood. It was a cancer of these so-called islet cells that Jobs had.

None of this matters in the sense that cancer ultimately took his life. But the fact that he didn’t have pancreatic cancer—which most people knows kills swiftly—does provide some rationale for the exotic treatments that Jobs first tried to combat his disease. Even Steve Kroft in a “60 Minutes” interview with Jobs’ biographer asked how someone so smart could be so stupid as to delay surgery for nine months after diagnosis. The assumption is that the cancer in his pancreas was metastasizing wildly in the interim.
The cancer cells were undoubtedly multiplying—that's what cancer does—and surgery is often the best way to extend survival in cases like this. It’s been reported that instead of conventional medical treatment, Jobs tried a macrobiotic diet, acupuncture and even visited spiritualists. He engaged in the sort of “magical thinking” for which he was apparently famous at Apple. Jobs was quoted as saying that he didn’t want his body opened up and “violated that way.” When he finally did relent and took the path of surgery and science, Jobs did so with passion and curiosity, sparing no expense and pushing the frontiers of new treatment.

At least initially, Jobs had reason to believe that his cancer wasn’t likely to kill him. Having learned that he didn’t have straight-up pancreatic cancer, he must have calculated that he had options other than the obvious one. We don’t know exactly what his doctor told him, but it appears that Jobs came to believe that he had some wiggle room. Given the fervor demonstrated later when he had his entire cancer genome sequenced (at an estimated cost of $100,000), I suspect he decided early on that alternative therapy pursued aggressively might do the trick. Jobs wasn’t the sort of guy to do anything half way.
The remaining question is whether prompt surgery post-diagnosis would have saved his life. It should not be assumed that it would have, as some commentators have speculated. The response that Jobs made, while it might not have been mine, was not unreasonable given what it appears he knew about his prognosis. He did not commit suicide by cancer.

Every form of cancer is unique, as is every patient’s emotional response to it. As you might expect, Jobs tried the unconventional before, realizing his mistake, he went down a very different road. That’s the damnable thing about the disease: it rarely follows a script. It can kill you in a matter of months or it can spontaneously resolve and never return. In between, there is an infinite number of ways for things to go.

No one can say with authority what the correct course of care might have been for Jobs. We all do the best we can with the information we have, change course if necessary, and attempt to deal gracefully with whatever happens. When magic didn't work, Jobs tried genomics. Polar opposites perhaps, but there may be less difference between the two than we imagine.

1 comment:

Anonymous said...

Hi Peter. Steve Jobs and I shared the same cancer except for one detail. His originated in his pancreas and moved to his liver, mine originated in my GI tract and moved to my liver. They are both called "neuro-endocrine" cancers but with different manifestations and different treatments. There are some key similarities. Both are based on an over-production of hormones that give rise to the tumors and their growth. Seratonin is what has driven my cancer and upon which my treatment is based. That is why I get a monthly injection of Sandostatin (Octreotide) to ward off the hormone production. In return, since my gall bladder was removed, I have to take pancreatic enzymes before every meal. As for diet, I have to stay away from fatty foods and high amounts of sugar. Doesn't leave much... The prognosis for me is around 10 years as best they can tell. Maybe more, maybe less. We'll see over time. Take care...Eric