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Woo for cancer: Say it ain’t so, Steve!

Yesterday was a rather long day, starting with a long commute in the morning, followed by a long day in the office mainly doing grant paperwork, and capped off by getting home late. Even so, I couldn’t ignore this particular story for two reasons. First, it’s about so-called “alternative” medicine. Second, it’s about Steve Jobs, co-founder of Apple Computer and the creative, if at times arrogant and abusive, creative genius behind Apple’s recovery from the brink of bankruptcy 11 years ago to its current situation, where its computers are cool; its operating system rocks; and it rules over the digital music realm trying to keep its competitors from bringing it down. In the interest of my red eyes and tired brain, though, I’ll try to keep it uncharacteristically brief (which, of course, for me means under 5,000 words).

The Advice Goddess (and others) made me aware that one of the key creators of my favored form of computer and various other digital devices, Steve Jobs, is seriously into woo, pointing me in the direction of this Fortune story:

(Fortune Magazine) — In October 2003, as the computer world buzzed about what cool new gadget he would introduce next, Apple CEO Steve Jobs – then presiding over the most dramatic corporate turnaround in the history of Silicon Valley – found himself confronting a life-and-death decision.

During a routine abdominal scan, doctors had discovered a tumor growing in his pancreas. While a diagnosis of pancreatic cancer is often tantamount to a swiftly executed death sentence, a biopsy revealed that Jobs had a rare – and treatable – form of the disease. If the tumor were surgically removed, Jobs’ prognosis would be promising: The vast majority of those who underwent the operation survived at least ten years.

Yet to the horror of the tiny circle of intimates in whom he’d confided, Jobs was considering not having the surgery at all. A Buddhist and vegetarian, the Apple (AAPL, Fortune 500) CEO was skeptical of mainstream medicine. Jobs decided to employ alternative methods to treat his pancreatic cancer, hoping to avoid the operation through a special diet – a course of action that hasn’t been disclosed until now.

I remember reading about this a few years back. Jobs was incredibly lucky. Pancreatic cancer is indeed a highly lethal tumor, and Jobs was right at the age range where it’s typically diagnosed. In the best case scenario, if the tumor can be completely removed surgically, median five year survival rates are reported to be in the 25% range, although some centers report higher. That’s if the patient is lucky enough to have had the tumor caught while it was still confined to the pancreas and hadn’t metastasized or grown to encase vital blood vessels that run just posterior to the pancreas whose involvement with tumor can preclude surgical resection. If pancreatic cancer has metastasized, even with the best modern chemotherapy and radiation, median survival time is typically measured in months, and survival beyond 18 months is quite uncommon. More commonly, it’s around 6 months–or even less, depending on the extent of disease. Jobs, however, had a form of cancer that is highly treatable with surgery. Indeed, complete surgical excision of this type of tumor is generally curative (more on that later). Ultimately, Jobs underwent the surgery, but he was taking a chance:

In the end, Jobs had the surgery, on Saturday, July 31, 2004, at Stanford University Medical Center in Palo Alto, near his home. The revelation of his brush with death remained – like everything involving Jobs and Apple – a tightly controlled affair. In fact, nary a word got out until Jobs’ tumor had been removed. The next day, in an upbeat e-mail to employees later released to the press, he announced that he had faced a life-threatening illness and was “cured.” Jobs assured everyone that he’d be back on the job in September. When trading resumed a day after the announcement, Apple shares fell just 2.4%.

I’m not going to discuss the other aspects of the article, which is basically the story of how Steve Jobs tends to make his own rules and in doing so may sometimes put the health of his company at as much risk as he did his own life. Suffice it to say that the portrait is nothing new. Jobs is feared because he’s willfull and brazen, oozing arrogance at times. He’s known for reducing subordinates to tears with his legendary tantrums. He’s done some unsavory things in his personal life. On the other hand, he has a genius for design and marketing and a clear vision of what he wants, talents that allowed him to bring Apple to where it is. Despite his tendency to abuse his underlings and hog the credit for their ideas, he has a knack for bringing out their best work through a combination of inducing fear and providing a compelling overarching vision. Whatever his talents, it’s obvious that one of them was not good judgment about medicine. Whatever his business and design savvy, when it came to medicine, he demonstrated critical thinking skills that, if applied to his business dealings, would bring Apple down from its heights to utter ruin. Neuroendocrine tumors of the pancreas make up less than 2% of all pancreatic tumors, and he was lucky enough to have gotten that form rather than the more common deadly version.

Here’s more of the story:

Jobs’ tumor was discovered in October 2003. He had been getting abdominal scans periodically because of a history of intestinal problems. His doctors noticed a growth that turned out to be an islet cell neuroendocrine tumor – a rare and operable form of pancreatic cancer. With surgery, his long-term prognosis would be good.

But Jobs sought instead to treat his tumor with a special diet while launching a lengthy exploration of alternative approaches. “It’s safe to say he was hoping to find a solution that would avoid surgery,” says one person familiar with the situation. “I don’t know if he truly believed that was possible. The odd thing is, for us what seemed like an alternative type of thing, for him is normal. It’s not out of the ordinary for Steve.”

If it was fear that motivated Jobs, I can understand it. Although he was fortunate enough to have an islet cell cancer instead of the more common and deadly adenocarcinoma of the pancreas, it was in the head of the pancreas, the part that is closest to the duodenum. Lesions in the tail of the pancreas can often be removed with an operation called a distal pancreatectomy, which involves removing only part of the pancreas. Because of the anatomy of the head of the pancreas, its attachment to the duodenum, and the blood vessels in the area, the only way to remove lesions in the head of the pancreas is to do a much larger operation known as a pancreaticoduodenectomy, or, as it is more commonly known, the Whipple operation. There are a lot of potential complications to a Whipple operation. Sometimes, we weigh those complications and how long they would keep a patient in the hospital, against how long a patient has left. If a pancreatic cancer patient has only a few months left, doing an operation that will have him spending a significant chunk of his brief remaining time left in the hospital is a real consideration. However, that wasn’t a consideration for Steve Jobs. He would very likely be cured by the surgery. Moreover, in competent hands, the complication rate from a Whipple is acceptable, particularly if the patient is otherwise healthy. Even though the article quotes a 5% mortality rate, that is usually in the case of patients with pancreatic adenocarcinoma, most of whom tend to be somewhat debilitated to start with due to the tumor. It would probably have been less in Jobs’ case. True, because the duodenum is removed, another expected sequela of the operation is, depending on whether the pylorus is spared, having to eat a diet like that of patients who have their stomachs (or large portions thereof) removed.

This is not a controversial issue in medicine; there is no other effective treatment for these neuroendocrine tumors:

By the standards of medical science, it was an open-and-shut case: There was no serious alternative to surgery. “Surgery is the only treatment modality that can result in cure,” Dr. Jeffrey Norton, chief of surgical oncology at Stanford, wrote in a 2006 medical journal article about this kind of pancreatic cancer. It was Norton, one of the foremost experts in the field, who eventually operated on the Apple CEO, Fortune is told. (He declined to comment.)

Dr. Roderich Schwarz, chairman of surgical oncology at the University of Texas Southwestern Medical Center in Dallas, who has performed the procedure more than 150 times (but who was not involved in Jobs’ case), says that waiting more than a few weeks with this diagnosis “makes no sense because you don’t know what the potential for growth or spread is.” Schwarz says he knows of no evidence that diet can be helpful. “But the patient decides. If they believe an herbal diet can do miracles, they have to make the decision. Every once in a while you have somebody who decides something you wish they wouldn’t.”

By the way, another reason I couldn’t resist blogging about this is because I know Dr. Schwarz. In fact, it would be…interesting to see his reaction if he were ever to learn who Orac is. In any case, he’s correct about this. Some neuroendocrine tumors, if they spread and get out of control, can secrete various hormones that can cause syndromes that are quite unpleasant and difficult to treat. They can also take a very long time to kill a person.

What Steve Jobs needed was for a doctor to get in his face and give him a dressing down of the sort that Jobs gives his employees, saying: “I know you’re a genius when it comes to industrial design of computers, making technology products that people love, and running an animation studio. I know you’ll be remembered as a giant in the history of computing, digital music, and technology. Unfortunately, none of that means you know squat about medicine. Diet, herbs, and the other woo you’re interested in will not stop this tumor. Nothing will heal it except cold, hard, surgical steel. Moreover, it’s puzzling to me where all that critical thinking you put into designing computers and running your business went to when it comes to your health. But, hey, it’s your choice. You can gamble that your plan won’t delay your therapy to the point where I can’t do anything to cure you anymore. Or you can listen to the scientific consensus and have the surgery. Your choice.”

Of course, Jobs probably would have ignored it or even ranted back, but it’s something he needed to hear, and all of his employees and friends are too intimidated by him to give it to him straight.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

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