Steve Jobs, neuroendocrine tumors, and alternative medicine

It’s been a mere two days since Steve Jobs died. Although it hasn’t yet been revealed what his specific cause of death was, it’s a good bet that Jobs’ death was due to a recurrence of his pancreatic cancer, first diagnosed in 2003, for which he underwent surgery in 2004 and ultimately a liver transplant in 2009. It’s a history that I outlined yesterday (at least up to the time the original posts were written) by reposting two posts I wrote about his liver transplant back in 2009. But a funny thing has happened since then, and that’s that Jobs has become a flashpoint in an argument that has nothing do with the technology his company created or his role in the history of American business and technology. Rather, it’s about alternative medicine and what role it did (or did not) play in Jobs’ ultimate demise.

Predictably, first out of the box is the despicable crank known as Mike Adams. As I’ve written about in the case of Patrick Swayze, Tony Snow, Farrah Fawcett, and others, Adams has made a not-so-savory name for himself for ghoulishly (and gleefully) taking advantage of the death of celebrities in order to blame “conventional” medicine for having killed them. It’s a depressing and predictable pattern that continued with Steve Jobs. Indeed, Adams produced an article on Steve Jobs’ death so quickly (within hours of the announcement of Jobs’ passing) that I have to wonder if he had already had it written and teed up, just waiting for Jobs to die. Whatever the case, Adams entitled his article, again predictably enough given his past history, Steve Jobs dead at 56, his life ended prematurely by chemotherapy and radiotherapy for cancer, which begins with a typical charge (from Adams):

It is extremely saddening to see the cost in human lives that modern society pays for its false belief in conventional medicine and the cancer industry in particular. Visionary Steve Jobs died today, just months after being treated for cancer with chemotherapy at the Stanford Cancer Center in Palo Alto, California. In recent months, he appeared in public photos as a frail shadow of his former self. The thin legs, sunken cheek bones and loss of body weight are all classic signs of total body toxicity observed in chemotherapy and radiotherapy patients.


Or, of course, it could have been the recurrent cancer progressing. Cancer does that, you know.

Adams then goes on and on about how gaunt Jobs looked in his last few public appearances, and, indeed, it’s true. Jobs did start to look quite unhealthy in the time leading up to his liver transplant in 2009, and, even after recovering from his surgery, he never quite looked the same; certainly his gaunt appearance never quite rebounded. In public photos, Jobs never looked truly healthy again, and speculation abounded about the cause. Again, I’ve discussed this in detail multiple times before, most recently in my repost. In 2008, I speculated that maybe he had dumping syndrome from his Whipple operation, and this was before his liver transplant was ever revealed. After his transplant, the reason was less clear.

Be that as it may, Adams then concludes, again quite predictably for him:

In other words, there is no question that Steve Jobs underwent multiple conventional cancer treatments, including surgery, chemotherapy and radiotherapy.

In the end, however, even Steve Jobs could not overturn the laws of biochemistry. When you poison the human body, the result is the deterioration and eventual shut down of the body. Chemotherapy does not work! This fact should now be obvious, and yet every year, more and more people choose chemotherapy to their own demise — people like Farrah Fawcett, Peter Jennings, Patrick Swayze, Michael Douglas and many others (http://www.naturalnews.com/027047_c…).

Don’t they see that conventional cancer treatments do not work?

And:

Yet his remaining life was stolen from him by the cancer industry and its poisons. This is yet another frustrating example of how the modern medical system harms our society. It steals from us the longevity of visionary individuals who have so much more to offer our world in terms of creativity and innovation.

Of course, you can’t blame the cancer industry for causing Jobs’ cancer in the first place. Some other cause had to have been present to get the cancer growing — probably a combination of nutritional deficiencies and exposure to environmental toxins. And yet the cancer establishment says nothing to people about correcting obvious nutritional deficiencies that lead to cancer, even when most cancers can be prevented for mere pennies a day.

The truly ironic thing, of course, is that Jobs lived a lifestyle very similar to the one that Adams touts as an all-purpose cancer preventative. For example, Jobs was widely reported to be a vegan. Indeed, Jobs’ veganism was such “common knowledge” that comedy pieces were written about it. Actually, it’s not clear that Jobs really was a vegan. For instance, it’s been widely reported that he was in fact a pescatarian, which is a vegetarian who will sometimes eat fish, and was a Zen Buddhist. It is, however, clear that Jobs did not eat meat and that the animal rights group PETA has paid homage to him after his death for being a vegetarian and sympathetic to animal rights causes. The point, of course, is that Steve Jobs ate a diet and lived a lifestyle far more similar to the kind that Adams touts as a cure-all or prevent-all for cancer than the “typical” fat- and meat-laden American diet that Adams lambastes.

It goes further than that, though.

As I discussed back when it was first revealed, when Jobs was first diagnosed with his cancer, he decided to try to avoid surgery by undertaking a special diet. Indeed, in the Fortune story (The Trouble With Steve Jobs) that first reported this, Jobs was described as “skeptical of mainstream medicine” and having decided to “employ alternative methods to treat his pancreatic cancer, hoping to avoid the operation through a special diet.” In fact, this is how the 2008 article described the situation:

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.”

It’s not clear just what, exactly, this “special diet” was. I do hope that Walter Isaacson’s upcoming biography of Jobs, scheduled to be released October 24, reveals a bit more about Jobs’ diet around that time and what other “alternative” cancer therapies, if any, Jobs pursued during those nine months, give that he did know that Jobs was dying several weeks ago because Jobs told him so in an interview and given that he was also given unprecedented access to Jobs and the people close to him during the last few years. It would also be interesting to know more about the events surrounding Jobs’ liver transplant in 2009. Be that as it may, if anything, Jobs might well have decreased his chances of survival by pursuing exactly the sort of non-science-based program of diets and supplements that Mike Adams routinely holds up as the sort of regimen that will cure or prevent cancer.

There is, however, the chance of taking this argument, namely that Jobs might have died because of his embrace of non-science-based treatments, too far in the other direction. Unfortunately, there are a journalist and a skeptic who should really know better who do just that, using Steve Jobs’ death as evidence of the harm that alternative medicine can do. Now, given my reputation as someone who relentlessly applies the cudgel of reason, science, and critical thinking squarely to the back of the head of woo on a regular basis, you just might think that I would heartily approve of this line of argument. You’d be wrong, not because I have any qualms whatsoever about appropriately blaming alternative medicine when someone pursues alternative medicine and ultimately dies. (I have, after all, done it myself on several occasions.) The key word is “appropriately,” and the reason that I’m not so hot on using Jobs’ death as a “negative anecdote” against “alternative” medicine is because I’m not so sure how appropriate doing so is in Jobs’ case. While Jobs certainly didn’t do himself any favors by waiting nine months to undergo definitive surgical therapy of his tumor, it’s very easy to overstate the potential harm that he did to himself by not immediately letting surgeons resect his tumor shortly after it was diagnosed eight years ago. Unfortunately, Brian Dunning does exactly that in his post A Lesson in Treating Illness (also posted over at Skepticblog):

I’m sad that today I’m adding a slide to one of my live presentations, adding Steve Jobs to the list of famous people who died treating terminal diseases with woo rather than with medicine.

Except that Jobs didn’t; at least, he didn’t for the most part. Aside from the initial nine months, Jobs largely relied on conventional therapy to treat his disease. In fact, he underwent the most invasive, cancer aggressive operation (the Whipple pancreaticoduodenectomy), which is one of the biggest, if not the biggest operation, that surgical oncologists do. Then, after his tumor recurred in his liver, he underwent the biggest, mot technically complex type transplant operation there is, a liver transplant, which, let me tell you, was not made any easier by his previous Whipple operation. Having scrubbed on several liver transplants when I was a resident, I can only imagine how difficult it was to do a liver transplant in the face of such extensive prior surgery. When his cancer apparently recurred a second time earlier this year, Jobs was seen going to the Stanford Cancer Center in Palo Alto, California, looking frail and thin. Tabloid reports on the sightings came complete with speculations from an unethical physician who, based on photos of Jobs leaving the cancer center, proclaimed him “terminal” and predicted that he had only six weeks to live.

Moreover, the other “alternative” therapy reportedly pursued by Jobs in Switzerland was a therapy based on radiation therapy, you know, the kind of therapy known to the likes of Adams as “burning” the cancer. In any case, Jobs apparently traveled to the University Hospital of Basel in Switzerland to receive a form of “hormone-delivered radiotherapy.” For some reason this is being portrayed in the press as somehow “alternative.” In reality, from what I can tell, it’s science-based, but experimental. Basically, in this therapy, radioisotopes are linked to a peptide hormone, receptors for which are found on the tumor being treated. The hormone then binds to the receptors, bringing the radioisotope close enough to the tumor cells to deliver a high dose of radiation. These can be used for imaging and therapy, depending upon the radioisotope linked to them. Examples include glucagon-like peptide-1 and other targets for directing radiation to insulinoma. This therapy is not “alternative,” although it’s not standard of care; it’s definitely science-based.

All of this leaves the sole remaining question regarding the issue of “alternative” medicine and cancer in the case of Steve Jobs as: Did Jobs significantly decrease his chance of surviving his cancer by waiting nine months to undergo surgery? It seems like a no-brainer, but it turns out that that’s actually a very tough question to answer. Certainly, it’s nowhere near as certain as Dunning tries to make it seem when he writes things like:

Eventually it became clear to all involved that his alternative therapy wasn’t working, and from then on, by all accounts, Steve aggressively threw money at the best that medical science could offer. But it was too late. He had a Whipple procedure. He had a liver transplant. And then he died, all too young.

After over seven years of science-based treatments that prolonged his life.

One has to be very, very careful about making this sort of argument. For one thing, it could not have been apparent that it was “too late” back in 2004, when it became clear that Jobs’ dietary manipulations weren’t working. For another thing, we don’t know how large the tumor was, whether it progressed or simply failed to shrink over those nine months, and by how much it increased in size, if increase in size it did. Again, I hope that information will be revealed in the Jobs’ biography; such data would go a long way in clarifying just how much, if at all, Jobs might have compromised his chance for cure by delaying. Right now, we just don’t know enough to make even a good guesstimate. Based on what we do know now, the thing that has to be remembered is that neuroendocrine tumors of the pancreas tend for the most part to be fairly indolent, slow-growing tumors. In fact, reporter Sharon Begley gets it closer to correct when she describes the situation thusly:

Even those that have been present for years, and in some cases decades, often stay safely confined to the pancreas. This kind of cancer can be so indolent that patients often die with it than from it. Although an estimated 2,000 to 3,000 people in the U.S. are diagnosed every year with neuroendocrine tumors of the pancreas, autopsies find the disease in hundreds more–people who were apparently not harmed by this very slow-growing cancer.

In other words, it’s very much overstating the case to write, as Dunning does:

As he dieted for nine months, the tumor progressed, and took him from the high end to the low end of the survival rate.

We don’t know that this was the case, and we certainly can’t say that for sure–or even with a great deal of certainty. To reiterate, I would certainly agree that Jobs did himself no favors by waiting. If I were his physician or the surgeon to whom he was referred, I would have done my best to talk him out of such a course of action, but I would do so more out of the uncertainty of not knowing how fast his tumor would progress. So, is it possible, even likely, that Jobs compromised his chances of survival? Yes. Is it definite that he did? No, it’s not, at least it’s not anywhere as definite as Dunning makes it sound. In fact, based on statistics alone, it’s unlikely that a mere nine months took Jobs “from the high end to the low end of the survival rate,” as Dunning puts it. That’s just not how insulinomas usually behave from a biological standpoint. They’re too indolent, and that’s not even taking into account issues of lead time bias and other confounding factors that would make comparisons of operating early versus operating later not as straightforward as one might think.

It turns out that Sharon Begley’s story is far more accurate in its assessment of Jobs’ indulgence in alternative medicine, but even she stumbles a bit:

Not that the surgery was a walk in the park. In many cases, says Kim, “you can just remove the tumor with a little of the surrounding [pancreatic] tissue.” But Jobs’s was not such a simple case. He underwent an operation called a modified Whipple procedure, or a pancreatoduodenectomy, Fortune reported. The surgery removes the right side of the pancreas, the gallbladder, and parts of the stomach, bile duct, and small intestine. The fact that so much more than the pancreas itself had to be removed suggests that Jobs’s cancer had spread beyond the pancreas. The cancer might have already spread by the time it was discovered in 2003, though Jobs’s sanguine description of his prognosis suggests that if that were the case, the metastasis might have been so small– “micrometastases”–as to be undetectable. Alternatively, the cancer could have spread during the nine months that Jobs was experimenting with nonstandard therapies.

No, the fact that more than the pancreas had to be removed means that the head of the pancreas had to be removed, which requires removing parts of other organs to do. The tumor could be a centimeter in diameter or several centimeters in size. It wouldn’t matter; if the tumor is in the head of the pancreas and the surgeon judges that it can’t be safely enucleated for whatever reason, be it proximity to the pancreatic duct or whatever, then the head of the pancreas has to come out. If the head of the pancreas has to come out, then from a strictly anatomical standpoint achieving that resection requires removing the duodenum, often part of the stomach (although pylorus-sparing Whipples can preserve the whole stomach), the gallbladder, and part of the bile duct, as I pointed out again yesterday. It says very little about the extent of the tumor that Jobs required a Whipple, although it does say a lot about the location of the tumor. That the surgeon opted to do a Whipple also tells us that there probably wasn’t any evidence of metastatic spread of the tumor at the time. Otherwise, I doubt the surgeon would have recommended as huge of an operation as a Whipple just for palliation. Indeed, Whipple operations are generally done with curative intent and only very rarely done for palliation. The morbidity is too high to justify doing such an operation when it can’t save the patient’s life. In fact, it’s not unreasonable to infer from the willingness of the surgeon to do a Whipple operation that, as far as could be determined, Jobs’ tumor was still restricted to the head of the pancreas and thus still potentially curable, even after nine months’ delay. Also take into account that Jobs’s tumor was originally diagnosed by a CT scan done for unclear indications, meaning that it detected the tumor probably far earlier than it would have been detected from symptoms, and Jobs should have had an excellent prognosis.

As we all know now, he did not.

If there’s one thing we’re learning increasingly about cancer, it’s that biology is king and queen, and that our ability to fight biology is depressingly limited. In retrospect, we can now tell that Jobs clearly had a tumor that was unusually aggressive for an insulinoma. Such tumors are usually pretty indolent and progress only slowly. Indeed, I’ve seen patients and known a friend of a friend who survived many years with metastatic neuroendocrine tumors with reasonable quality of life. Jobs was unfortunate in that he appears to have had an unusually aggressive form of the disease that probably would have killed him no matter what. That’s not to say that we shouldn’t take into account his delay in treatment and wonder if it contributed to his ultimate demise. It very well might have, the key word being “might.” We don’t know that it did, which is one reason why we have to be very, very careful not to overstate the case and attribute his death as being definitely due to the delay in therapy due to his wanting to “go alternative.” It’s also important to remember that, as much of a brilliant visionary Jobs was, even brilliant visionaries can make bad decisions when it comes to health.