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Steve Jobs’ medical reality distortion field

As I pointed out in my previous post about Steve Jobs, I’m a bit of an Apple fan boy. A housemate of mine got the very first Mac way back in 1984, and ever since I bought my first computer that was mine and mine alone back in 1991 (a Mac LC), I’ve used nothing but Macintosh computers, except when compelled to use Windows machines by work—and even then under protest. Indeed, as I searched for jobs at various times in my life, I asked myself whether I could accept a job at an institution that didn’t permit me to have a Mac in my office, such as the V.A. Fortunately, I never had to make that choice. All of this explains why I paid a lot of attention to Steve Jobs and also why his death saddened me and, relevant to this blog, the clinical history of the cancer that killed him fascinates me.

It’s often been said that there was a sort of “reality distortion field” around Steve Jobs. It was a part joking, part derogatory, part admiring term applied to Jobs’ talent for persuasion in which, through a combination of personal charisma, bravado, hyperbole, marketing, and persistence, Jobs was able to persuade almost anyone, even developers and engineers, of almost anything. In particular, it referred to his ability to convince so many people that each new Apple product was the greatest thing ever, even when that product had obvious flaws. Unfortunately, as more news comes out about how Steve Jobs initially dealt with his diagnosis of a neuroendocrine tumor of the pancreas (specifically, an insulinoma) back in 2003 and 2004, it’s become apparent that Jobs had his own medical reality distortion field, at least in the beginning right after his diagnosis of a rare form of pancreatic cancer, that allowed him to come to think that he might be able to reverse his cancer with diet plus various “alternative” modalities.

In the immediate aftermath of Steve Jobs’ death, I summarized the facts about Jobs’ case that were known at the time. In particular, I took issue with the claims of a skeptic that “alternative medicine killed Steve Jobs.” At the time, I pointed out that, although it was very clear that Steve Jobs did himself no favors by delaying his initial surgery for nine months after his initial diagnosis, we do not have sufficient information to know what his clinical situation was and therefore how much, if at all, he decreased his odds of survival by not undergoing surgery expeditiously. To recap: Did Steve Jobs harm himself by trying diet and alternative medicine first? Quite possibly. Did alternative medicine kill him? As I’ve argued before, that’s impossible to say, and any skeptic who dogmatically makes such an argument has taken what we known beyond what can be supported. Regular readers know that when I see a story that looks as though “alternative medicine” directly contributed to the death of someone, I usually pull no punches, but in this case I had a hard time being so definitive because the unknowns are too many, with all due respect to Ramzi Amri, a Research Associate at Harvard Medical School who in my opinion also went too far. I did, however, point out that I’m always open to changing my opinion if new evidence comes in. Jobs was always incredibly secretive about his medical condition, so much so that it didn’t even come out in the press until after it had happened that he had undergone a liver transplant in 2008 for metastatic insulinoma in his liver, just as his cancer diagnosis in 2003 remained secret for 9 months, not being revealed until he sent an e-mail to Apple employees announcing that he had undergone surgery.

It turns out that, with the imminent release of a major biography of Steve Jobs, more information is finally trickling out about his medical history. For instance, Jobs’ biographer Walter Isaacson is going to appear on 60 Minutes this Sunday, and apparently he is going to say this:

Everyone else wanted Steve Jobs to move quickly against his tumor. His friends wanted him to get an operation. His wife wanted him to get an operation. But the Apple CEO, so used to swimming against the tide of popular opinion, insisted on trying alternative therapies for nine crucial months. Before he died, Jobs resolved to let the world know he deeply regretted the critical decision, biographer Walter Isaacson has told 60 Minutes.

“We talked about this a lot,” Isaacson told 60 Minutes of Jobs’s decision to treat a neuroendocrine tumor in his pancreas with an alternative diet rather than medically recommended surgery. “He wanted to talk about it, how he regretted it….I think he felt he should have been operated on sooner… He said, ‘I didn’t want my body to be opened…I didn’t want to be violated in that way.'”

Isaacson is also quoted as saying about Jobs:

He’s regretful about it… Soon everybody is telling him, ‘Don’t try and treat it with these roots and vegetables and these kinds of things…’ By the time they operate on him they notice it has spread to the tissues around the pancreas.

You know, I think I’ll have to buy this book when it comes out next week, if only to read the chapters on Jobs’ illness. Assuming that the account above is true, what does it tell us? First, it doesn’t significantly change my original assessment that, at the time of surgery in 2004, Jobs probably didn’t have metastatic disease. The reason I say that is because if Jobs had any evidence of metastatic disease, it is highly doubtful that a surgical oncologist would have undertaken as huge an operation as the Whipple procedure, an operation that is usually only performed with curative intent. It’s very rare that this operation is done for solely palliative purposes, because the potential for complications is fairly high, and even when there are no complications it permanently alters the GI physiology of the person undergoing it. With that in mind, the report above implies to me is that Jobs’ tumor had grown larger and started to invade through the capsule of the pancreas into the surrounding fatty connective tissue. Further, it’s also not clear whether this tumor was seen on imaging before his operation or whether it was the finding of microscopic tumor deposits outside of the pancreas in the surgical specimen removed. Given how indolent insulinomas usually are, especially if they’re functional, as Jobs’ tumor appears to have been from all news reports (when it recurred Jobs attributed his medical leave to a “hormone imbalance”), it’s not clear that his surgeon wouldn’t have found tumor spread found outside of the pancreas if he had undergone surgery right away. As Dr. Len Lichtenfeld, deputy chief medical officer of the American Cancer Society has pointed out, people “live with these tumors far longer than nine months before they’re even diagnosed.” I suggest going back and read my post on the early detection of cancer, particularly the part about lead time bias, for an explanation of why the nine month delay might not have mattered much. As I have said before, biology is king and queen, and for certain tumors in certain patients biology trumps whatever we can throw at them.

Another interesting tidbit of information coming out just now is just what Jobs did during those nine months during which he delayed having surgery. This ABC News report hints at it:

Jobs, fascinated by Eastern mysticism in his youth, believed in alternative herbal treatments, and sources have told ABC News in the past that they thought he minimized the seriousness of his condition. One source close to Jobs said he kept his medical problems private, even from members of Apple’s board of directors — who finally had to persuade him his health was of critical importance to Apple’s success and the value of its stock to shareholders.

And this AP report states:

Instead, he tried a vegan diet, acupuncture, herbal remedies and other treatments he found online, and even consulted a psychic. He also was influenced by a doctor who ran a clinic that advised juice fasts, bowel cleansings and other unproven approaches, the book says, before finally having surgery in July 2004.

This is fairly vague, although one wonders if this acupuncturist is identified in the book, you know, the one who allegedly told Dr. Nicholas Gonzalez that she was trying to get Jobs to see him. Maybe Gonzalez wasn’t lying after all, because the description in the passage above does sound a lot like the Gonzalez protocol, which involves juice fasts, a whole lot of supplements, various other radical diet manipulations, plus daily (or more) coffee enemas. Could it be that Gonzalez did for a while influence Jobs?

Perhaps the book will tell.

Then there’s this video from the ABC News report:

There he is, at right about the 2:00 mark: Dr. Dean Ornish. In fact, from the news report, it appears that Dr. Ornish was not only Jobs’ friend but his doctor as well. Dr. Ornish is a problematic woo-prone physician in that, while hanging out with the likes of Andrew Weil, Rustum Roy, and Deepak Chopra, he tries to do actual science but unfortunately just doesn’t do a particularly good job of it. That in and of itself wouldn’t be so horrible, except that he draws very strong inferences from what his data show that go far beyond what is supportable by the science. Despite all these problems, there is still hope that Ornish is reachable by science-based medicine; he just has to give up his tendency to keep linking his diet with “complementary and alternative medicine” (CAM) and “integrative medicine” and embrace more rigorous, hypothesis-grounded science.

So, until I can get my hands on the book (and actually have time to read it, or at least the chapters on Jobs’ illness), what can I reasonably conclude based on what is known now? First, my original assessment has changed only slightly. Based on this new information, it appears likely to me that Jobs probably did decrease his chances of survival through his nine month sojourn into woo. On the other hand, it still remains very unclear by just how much he decreased his chances of survival. My best guesstimate is that, thanks to the indolent nature of functional insulinomas and lead time bias, it was probably only by a relatively small percentage. I also feel compelled to point out that accepting that Jobs’ choice to try “alternative medicine” first probably decreased somewhat his chances of surviving his cancer is a very different thing than concluding that “alternative medicine killed Steve Jobs,” which is in essence what Ramzi Amri and Brian Dunning both did. The first statement is a nuanced assessment of probabilities based on science and taking into account uncertainty; the latter statement is black-and-white thinking, in essence the mirror image of Nicholas Gonzalez’s claim that if only Jobs had come to see him he could have been saved.

Finally, what does this incident say about alternative medicine for cancer? Certainly, it shows that even someone as brilliant as Steve Jobs can be prone to denial, and, yes, even magical thinking, as this ABC News report points out:

How could Jobs have made such a decision?

“I think that he kind of felt that if you ignore something, if you don’t want something to exist, you can have magical thinking…we talked about this a lot,” Isaacson told CBS News.

No doubt that’s another key component of the appeal of alternative medicine: Magical thinking. Just eat this root, do these colon cleanses, let this healer manipulate your energy fields, and everything will be fine. No nasty invasive surgery that will permanently alter your body and how it functions. No poisonous chemotherapy. Unfortunately, reality doesn’t work this way, no matter how powerful the reality distortion field. Ultimately, reality intrudes, as it did for Jobs. When it did, when a followup scan apparently revealed that his insulinoma had grown, Jobs realized he had made a horrible mistake and tried to correct his course by undergoing surgery right away. It’s not clear whether his time in his self-created medical reality distortion field ultimately led to his demise or whether his fate was sealed when he was first diagnosed. Again, there’s just too much uncertainty ever to know for sure, and even if Jobs did decrease his odds of survival significantly it’s impossible to say whether the delay meant the difference between life and death in his specific case. What is clear is that no reality distortion field can long hold cancer at bay. Reality always eventually wins over magical thinking, no matter how much it might appear that magical thinking is winning at any given time.

Posted in: Cancer, Nutrition, Science and the Media

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