Articles

“And one more thing” about Steve Jobs’ battle with cancer

I’ve written quite a bit about Steve Jobs in the wake of his death nearly four weeks ago. The reason, of course, is that the course of his cancer was of intense interest after it became public knowledge that he had cancer. In particular, what I most considered to be worth discussing was whether the nine month delay between Jobs’ diagnosis and his undergoing surgery for his pancreatic insulinoma might have been what did him in. I’ve made my position very clear on the issue, namely that, although Jobs certainly did himself no favors in delaying his surgery, it’s impossible to know whether and by how much he might have decreased his chances of surviving his cancer through his flirtation with woo. However much his medical reality distortion field might have mirrored his tech reality distortion field, my best guess was that Jobs probably only modestly decreased his chances of survival, if that. I also pointed out that, if more information came in that necessitated it I’d certainly reconsider my conclusions.

The other issue that’s irritated me is that the quackery apologists and quacks have been coming out of the woodwork, each claiming that if only Steve Jobs had subjected himself to this woo or taken this supplement, he’d still be alive today. Nicholas Gonzalez was first out of the gate with that particularly nasty, unfalsifiable form of fake sadness, but he wasn’t the only one. Recently Bill Sardi claimed that there are all sorts of “natural therapies” that could have helped Jobs, while Dr. Robert Wascher, MD, a surgical oncologist from California (who really should know better but apparently does not) claims that tumeric spice could have prevented or cured Steve Jobs’ cancer, although in all fairness he also pointed out that radical surgery is currently the only cure. Unfortunately, he also used the failure of chemotherapy to cure this kind of cancer as an excuse to call for being more “open-minded” to alternative therapies. Even Andrew Weil, apparently stung by the speculation that Jobs’ delay in surgery to pursue quackery might have contributed to his death, to tout how great he thinks integrative cancer care is.

Last week, Amazon.com finally delivered my copy of Walter Isaacson’s biography of Steve Jobs. I haven’t had a chance to read the whole thing yet, but, because of the intense interest in Jobs’ medical history, not to mention a desire on my part to see (1) if there were any new information there that would allow me to assess how accurate my previous commentary was and (2) information that would allow me to fill in the gaps in the story from the intense media coverage. So I couldn’t help myself. I skipped ahead to the chapters on his illness, of which there are three, entitled Round One, Round Two, and Round Three. Round One covers the initial diagnosis. Round Two deals with the recurrence of Jobs’ cancer and his liver transplant. Finally, Round Three deals with the final recurrence of Jobs’ cancer, his decline, and death.

Before I start, a warning: I’m going to discuss these issues in a fair amount of detail. If you want “medical spoilers,” don’t read any further. On the other hand, one spoiler I will mention is that there was surprisingly little here that wasn’t reported before; the only difference is that there is more detail. However, the details are informative.

Round One

If there’s one thing I wanted the most information about from this biography, it was more details about Jobs’ initial presentation. After all, I had put my name on the line by arguing that his delay in surgical therapy probably didn’t make that much of a difference, and I was very curious to find out whether there was more information that would allow me to assess whether I should change my initial assessment. I was also interested in whether there was more information about what specific kinds of pseudoscience Jobs had pursued.

I was disappointed on both counts, but that’s not to say that this chapter didn’t provide me with some useful information.

The first thing I learned was the reason Jobs was getting CT scans. Remember, the diagnosis of his cancer was actually serendipitous. It was, as we like to call it, an incidentaloma in that it was an incidental finding on a scan done for a different purpose. In this case, the purpose of the CT scan was to examine his kidneys and ureter, as he had developed recurrent kidney stones beginning in the late 1990s. Jobs attributed them to his working too hard running both Apple and Pixar. In any case, in October 2003, Jobs just happened to run into his urologist, who pointed out that he hadn’t had a CT scan of his urinary system in five years and suggested that he get one. He did, and there was a suspicious lesion on his pancreas. His doctors urged Jobs to get a special CT scan known as a pancreatic scan, which basically provides a lot more detail in the region of the pancreas. He didn’t; it took a lot of urging before he did it, and when he did at first his doctors thought he had standard pancreatic adenocarcinoma, the deadly kind that few survive. As has been reported before, though, Jobs underwent a transduodenal biopsy, and the diagnosis of neuroendocrine tumor was made.

Unfortunately, no further information is provided that we didn’t already know about regarding what Jobs did during the nine months he tried “alternative” therapies. He kept to a strict vegan diet that included large quantities of fresh carrot and fruit juices. (Shades of the Orange Man!) In addition:

To that regimen, he added acupuncture, a variety of herbal remedies, and occasionally a few other treatments he found on the internet or by consulting people around the country, including a psychic. For a while, he was under the sway of a doctor who operated a natural healing clinic in southern California that stressed the use of organic herbs, juice fasts, frequent bowel cleanings, hydrotherapy, and the expression of all negative feelings.

Unfortunately, the natural healing clinic wasn’t identified. I did a bit of searching, but I couldn’t narrow down the possibilities. There’s a lot of woo in southern California. Even so, as much as many of us here would like to condemn Dean Ornish, who was Jobs’ friend, apparently Ornish did try to do right by him:

Even the diet doctor Dean Ornish, a pioneer in alternative and nutritional methods of treating diseases, took a long walk with Jobs and insisted that sometimes traditional methods were the right option. “You really need surgery,” Ornish told him.

Ornish appears for once to have been right.

There’s still more in this chapter. For example, the book states that on a followup CT scan showed that the tumor “had grown and possibly spread.” In addition, the operation that Jobs underwent was described as not being a “full Whipple procedure” but rather a “less radical approach, a modified Whipple that removed only part of the pancreas.” I can only speculate what Isaacson meant by that. A Whipple, standard or not, by definition removes part of the pancreas, specifically the head. Because of the anatomic constraints of the pancreas, the head of the pancreas usually can’t really be removed without removing a significant portion of the duodenum and the common bile duct, and often some small intestine. That’s why, by definition, a Whipple operation includes removing the duodenum and part of the intestine; if those are not removed, then it’s not a Whipple procedure. I suspect that what Isaacson probably meant was a pylorus-sparing Whipple, as I discussed before. In this operation, part of the duodenum is still removed, but not part of the stomach, as in a standard Whipple. The advantage is that a pylorus-sparing Whipple can often alleviate many of the digestive complications of a Whipple operation, such as the “dumping syndrome,” because the pylorus is preserved.

Finally, it is revealed:

During the operation the doctors found three liver metastases. Had they operated nine months earlier, they might have caught it before it spread, although they would never know for sure.

Or, on the other hand, chances are very good that those liver metastases were there nine months before. Insulinomas tend not to grow so fast that they can progress from micrometastases to metastases visible to the surgeons in that short a period of time. So, while on the surface this revelation would seem to the average lay person to indicate that Jobs’ delay very well might have killed him, in reality, thanks to lead time bias, it probably means that his fate was sealed by the time he was diagnosed. Certainly, it means that claims such as the one made by Dr. Robert Wascher are not based in science and in fact are irresponsible:

In a recent interview with Newsmax Health Wascher explained how the simple act of consuming turmeric, a natural spice popular in Asian and Indian food, may be enough to prevent and cure the type of pancreatic cancer that afflicted former Apple CEO Steve Jobs, as well as other forms.

The same goes for Nicholas Gonzalez’s claims that he could have saved Jobs.

Round Two

What’s primarily interesting in the new information in this chapter are the details about Jobs’ being listed for liver transplant and how he ended up getting a liver in Tennessee. There has been a lot of speculation that somehow Jobs used his great wealth to “jump the queue” and get a liver more rapidly than he was entitled. As I’ve argued before, he did not, as you will soon see.

One thing I learned that I was right about is that a significant reason for Job’s emaciation in the wake of his surgery was what I had speculated: Complications from his Whipple procedure combined with his obsessive vegan diet. That is, that was the cause before his cancer recurrence. Isaacson described how, even after he had married and had children, he continued to have dubious eating habits. For example, he would spend weeks eating the same thing and then suddenly change his mind and stop eating it. He’d go on fasts. His wife tried to get him to diversify his protein sources and eat more fish, but largely failed. His wife hired a cook who tried to cater to Jobs’ strange eating habits. Indeed, Jobs lost 40 lbs. just during the spring of 2008. Another thing I learned was just how sick Jobs was at this point. His liver metastases had led to excessive secretion of glucagon; he was in a lot of pain and taking narcotics, his liver apparently full of metastases.

It turns out that Jobs was listed for liver transplant in both California and Tennessee, as approximately 3% of transplant recipients manage to list themselves in two different states. Isaacson describes:

There is no legal way for a patient, even one as wealthy as Jobs, to jump the queue, and he didn’t. Recipients are chosen based on their MELD score (Model for End-stage Liver Disease), which uses lab tests of hormone levels to determine how urgently a transplant is needed and on the length of time they have been waiting. Every donation is closely audited, data are available on public websites (optn.transplant.hrsa.gov), and you can monitor your status on the wait list at any time.

Regarding the multiple listing in California and Tennessee:

Such multiple listing is not discouraged by policy, even though critics say it favors the rich, but it is difficult. There were two major requirements: The potential recipient had to be able to get to the chosen hospital within eight hours, which Jobs could do thanks to his plane, and the doctors from that hospital had to evaluate the patient in person before adding him to the list.

Isaacson also reveals that it was a fairly close call. Jobs’ condition was deteriorating rapidly. If he hadn’t been listed in Tennessee, he very likely would have died before a liver became available to him in California. As it was, it wasn’t clear that he wouldn’t die before a liver became available to him in Tennessee. It might seem a bit ghoulish, but it’s the sort of thinking that everyone who’s ever undergone a liver transplant has a hard time avoiding. Isaacson reports that by March 2009 Jobs’ condition was poor and getting worse, but that there was hope among his friends that, because St. Patrick’s Day was coming up and because Memphis was a regional site for March Madness, there was a high likelihood of a spike in automobile crashes due to all the revelry and drinking associated with those events. We even learn that the donor was a young man in his mid-twenties who was killed in a car crash on March 21. It also turns out that Jobs had complications after his surgery. From what I can gather from Isaacson’s account (it wasn’t entirely clear to me) Jobs refused a nasogastric tube when he needed it and as a result aspirated gastric contents when he was sedated, developing a severe postoperative aspiration pneumonia from which at that point “they thought he might die.” Worse, although the transplant was a success, his old liver was riddled with metastases throughout, and surgeons noted “spots on his peritoneum.” Whether these “spots” were metastatic tumor deposits, Isaacson does not say, but it’s a good bet that they probably were.

Assuming Isaacson’s report is accurate and if those “spots” on the peritoneum were indeed metastatic insulinoma, this new information leads me to question more strongly than I did in the past (actually, I didn’t question the decision much at all) whether a liver transplant was a reasonable course of action in Jobs’ case, given that Jobs’ tumor burden in his liver seems to have been much higher than previously reported. If the spots were not cancer, then the transplant, although not contraindicated, was still high risk. In retrospect, it is not surprising that Jobs’ tumor recurred fairly quickly, less than two years after his transplant. Even Isaacson notes that by characterizing Jobs’ transplant as “a success, but not reassuring.” That’s because extrahepatic disease (disease outside of the liver, which peritoneal implants qualify as) is usually an absolute or near-absolute contraindication for liver transplant for cancer, at least in the case of hepatocellular cancer, because the chance of recurrence is so high. I make the analogy to adenocarcinoma of the pancreas, the much more lethal pancreatic cancer that is far more common than the insulinoma that Steve Jobs had. Often, surgeons will perform laparoscopy before attempting a curative resection (the aforementioned Whipple operation). If nodules are noted on the peritoneum, they are biopsied, and if the frozen section comes back as adenocarcinoma, the attempt at curative resection is aborted. The same is true when undertaking a curative resection for liver metastases from colorectal cancer, which can result in long term survival 30-40% of the time, but not if there’s even a hint of a whiff of extrahepatic disease. Although evidence is sketchy for insulinomas, because they’re such rare tumors, it’s hard not to conclude that the same is likely true for them and that extrahepatic disease is a contraindication to liver transplant.

Round Three

This chapter was, as you might imagine, a depressing read. In actuality, there wasn’t much new there or even much in the way of medical details that add much to what we know about Jobs’ course, aside from one revelation that I’ll discuss. First, to begin, in late 2010 Jobs started to feel sick again. Isaacson describes it thusly:

The cancer always sent signals as it reappeared. Jobs had learned that. He would lose his appetite and begin to feel pains throughout his body. His doctors would do tests, detect nothing, and reassure him that he still seemed clear. But he knew better. The cancer had its signaling pathways, and a few months after he felt the signs the doctors would discover that it was indeed no longer in remission.

Another such downturn began in early November 2010. He was in pain, stopped eating, and had to be fed intravenously by a nurse who came to the house. The doctors found no sign of more tumors, and they assumed that this was just another of his perioic cycles of fighting infections and digestive maladies.

In early 2011, doctors detected the recurrence that was causing these symptoms. Ultimately, he developed liver, bone, and other metastases and was in a lot of pain before the end.

The other issue discussed in this final chapter that is of interest to SBM readers is that Jobs was one of the first twenty people in the world to have all the genes of his cancer and his normal DNA sequenced. At the time, it cost $100,000 to do. This sequencing was done by a collaboration consisting of teams at Stanford, Johns Hopkins, and the Broad Institute at MIT. Scientists and oncologists looked at this information and used it to choose various targeted therapies for Jobs throughout the remainder of his life. Whether these targeted therapies actually prolonged Jobs’ life longer than standard chemotherapy would have is unknown, particularly given that Jobs underwent standard chemotherapy as well. It is rather interesting to read the account, however, of how Jobs met with all his doctors and researchers from the three institutions working on the DNA from his cancer at the Four Seasons Hotel in Palo Alto to discuss the genetic signatures found in Jobs’ cancer and how best to target them. Isaacson reports:

By the end of the meeting, Jobs and his team had gone through all of the molecular data, assessed the rationales for each of the potential therapies, and come up with a list of tests to help them better prioritize these.

The results of this meeting were sequential regimens of targeted drug therapies designed to “stay one step ahead of the cancer.” Unfortunately, as is all too often the case, the cancer ultimately caught up and passed anything that even the most cutting edge oncologic medicine could do. It’s always been the problem with targeted therapy; cancers evolve resistance, as Jobs’ cancer ultimately did.

What can we learn?

Even now, nearly four weeks later, there remains considerable discussion of Jobs’ cancer and, in particular, his choices regarding delaying surgery. Just yesterday, a pediatrician named Michele Berman speculating How alternative medicine may have killed Jobs. The article basically consists of many of the same oncologically unsophisticated arguments that I complained about right after Jobs’ death, some of which are included in another blog post on Celebrity Diagnosis. Clearly, an education in lead time bias is required. Does any of this mean that it was a good idea (or even just not a bad idea) for Jobs to have delayed having surgery for nine months? Of course not. Again, surgery was his only hope for long term survival. However, as I’ve pointed out before, chances are that surgery right after his diagnosis probably wouldn’t have saved Jobs, but there was no way to be able to come to that conclusion except in retrospect, and even then the conclusion is uncertain.

Although it’s no doubt counterintuitive to most readers (and obviously to Dr. Berman as well), finding liver metastases at the time of Jobs’ first operation strongly suggests this conclusion because it indicates that those metastases were almost certainly present nine months before. Had he been operated on then, would most likely would have happened is that Jobs’ apparent survival would have been nine months longer but the end result would probably have been the same. None of this absolves the alternative medicine that Jobs tried or suggests that waiting to undergo surgery wasn’t harmful, only that in hindsight we can conclude that it probably didn’t make a difference. At the time of his diagnosis and during the nine months afterward during which he tried woo instead of medicine, it was entirely reasonable to be concerned that the delay was endangering his life, because it might have been. It was impossible to know until later—and, quite frankly, not even then—whether Jobs’ delaying surgery contributed to his death. Even though what I have learned suggests that this delay probably didn’t contribute to Jobs’ death, it might have. Even though I’m more sure than I was before, I can never be 100% sure. Trust me when I say yet again that I really, really wish I could join with the skeptics and doctors proclaiming that “alternative medicine killed Steve Jobs,” but I can’t, at least not based on the facts as I have been able to learn them.

More interesting to me is part of the book where Isaacson reports on what was, in essence, Jobs’ indictment of a flaw in the medical system that he perceived after his second recurrence:

He [Jobs] realized that he was facing the type of problem that he never permitted at Apple. His treatment was fragmented rather than integrated. Each of his myraid maladies was being treated by different specialists—oncologists, pain specialists, nutritionists, hepatologists, and hematologists—but they were not being coordinated in a cohesive approach, the way James Eason had done in Memphis. “One of the big issues in the health care industry is the lack of caseworkers or advocates that are the quarterback of each team,” Powell said.

Isaacson contrasts the fragmented approach to Jobs’ care at Stanford to what is described as a far more integrated approach at Methodist Hospital in Memphis, where Jobs underwent his transplant and where Dr. James Eason was portrayed as having “managed Steve and forced him to do things…that were good for him.” Although it is certainly possible that the difference could be accounted for more by the lack of a person at Stanford with a strong enough personality to tell Jobs what he needed to do and get him to do it, compared to Dr. Eason, who clearly had a personality as strong as Jobs’, the description of fragmented care rings true to me, as I’ve seen this problem myself at various times during my career. One wonders if there is a way to infuse healthcare with some Apple-like integration of care, to build it into the DNA of the system itself as it is built into Apple’s DNA, without having to rely on personalities as strong as Dr. Eason’s apparently was.

Steve Jobs’ eight year battle with his illness is remarkable not so much because he had a rare tumor or because he flirted with alternative medicine for several months before undergoing surgery. Rather, I see Jobs’ case as providing multiple lessons in the complexity of cancer, the difficulty of the decisions that go into cancer care, and how being wealthy or famous can distort those choices. I’ve said it before, but now is as good a time as any to say it again: In cancer, biology is still king. Perhaps one day, when we know how to decode and interpret genomic information of the sort provided when Jobs’ had his tumors sequenced and use that information to target cancers more accurately, we will be able to dethrone that king more than just part of the time and only in certain tumors.

ADDENDUM: Finally, someone seems to agree with me!

Posted in: Cancer, Nutrition, Science and the Media

Leave a Comment (66) ↓

66 thoughts on ““And one more thing” about Steve Jobs’ battle with cancer

  1. wdygyp says:

    “[...] there was hope among his friends that [...] there was a high likelihood of a spike in automobile crashes [...]”

    Hoping for the death of other people, nice.

    Thank you for the article.

  2. ZenMonkey says:

    If my husband ever needed a life-saving transplant, I would be out running people off the road in hopes of harvesting an organ. I can’t see fit to moralize at people who desperately wish for a loved one to live even at the cost of an unknown person’s life.

    Thanks for this post and your other careful research on this alt-med question. It’s the best exigesis I’ve read, especially given how much you (and I) would love to lay blame there. It sounds like “It didn’t help and it may have hurt” is the most accurate conclusion/soundbite.

  3. wdygyp says:

    “ZenMonkey”, I can understand that moral integrity with its relation to selfish desires is a concept hard for you to grasp.

  4. daedalus2u says:

    I any of the CAM stuff he tried in the first 9 months had worked, the tumors wouldn’t have gotten worse. They did get worse, what he was doing was not working.

  5. David Gorski says:

    Hoping for the death of other people, nice.

    Having done a lot of transplant rotations when I was a surgical resident, I can say that this is an unfair characterization. Unfortunately, for a liver transplant patient to get a liver someone has to die, with few exceptions (partial transplants from living related donors are not yet that commonplace because the risk of partial hepatectomy to the donor is far higher than the risk of, for example, a nephrectomy to provide a living related kidney for transplant). Patients on transplant lists and their families are acutely aware of this equation. Even as they wish for a liver to save their lives, they are aware of the cold, hard fact that this can only happen if a donor with a compatible organ dies when they have reached the top of the recipient list and that they can only get to the top of the recipient list if the people ahead of them on the list either get organs or die waiting, both of which involve people dying.

    In any case, little was said about Jobs’ attitude towards this. It was mainly his wife, family, and friends who were described this way.

  6. DU2
    “I any of the CAM stuff he tried in the first 9 months had worked, the tumors wouldn’t have gotten worse. They did get worse, what he was doing was not working.”

    Huh, is that the kind of reasoning you are basing the dismissal of CAM treatments on? My FIL has been pursuing conventional medicine treatment of his cancer. Yet, after a brief glimmer of hope, when the tumors in his liver appeared to have shrunk and started to calcify, we find that his tumors have gotten far worse. By your logic, DU2, conventional medicine doesn’t work, either.

    @David Gorski, thank you for keeping us updated. I am really appreciating your balanced, considering handling of the topic.

    As a frequent healthcare consumer, I would agree with Steve Jobs that medical care could benefit from some sort of project manager involved in care. At this point the project manager of an individual’s healthcare is generally the patient or patient’s parent, spouse or child. Often, the people who are the most stressed by the illness and the may be the least educated in terms of healthcare or effective medical planning.

    Incorporating a project manager into the healthcare system would be a big undertaking and I can imagine there would be many bumps in the road in terms of hierarchy, cost and process. But I do think it would be worth considering.

  7. Anthro says:

    @ZenMonkey

    You cannot be serious! Let me get this straight, your husband is more important than my young-adult child, who would apparently be at great risk being on the same road as you if your husband was terminally ill? Unbelieveable. Hopefully, you are only trying to make a point and I should not take this too literally.

  8. wdygyp says:

    David Gorski wrote:
    “Having done a lot of transplant rotations when I was a surgical resident, I can say that this is an unfair characterization.”

    Unfortunately, you haven’t explained in the rest of your posting why you find my characterization unfair. I think my quote and comment on it faithfully describe the (alleged) mindset of (some of) his friends.
    There is a difference between being grateful for the compassion of a deceased donor and actively hoping for potential donors’ deaths.

  9. “There is a difference between being grateful for the compassion of a deceased donor and actively hoping for potential donors’ deaths.”

    Oh please, Possibly they are just human, not saints. When worried and sad sometimes people make jokes that are dark, goulish or slightly in poor taste. I know it is a common way of blowing off steam in our family. If you don’t like that, go ahead and feel superior. I’m not aware that the prerequsite of needing or getting an organ donation for a friend or spouse is a seal of approval from miss manners. It’s not like their attitude changes the number of accidental deaths in Tennessee that season.

  10. David Gorski says:

    Indeed.

    There’s nothing like a little annoying self-righteousness from someone like wdygyp to ruin a comment thread early, is there? Because we all know that neither wdygyp nor his family would ever even think of exhibiting a hint of “hoping for someone to die” or that an expected seasonal spike in automobile crashes would bring him a liver if he were ever facing death as he waited on a liver transplant list. Perhaps he is above human nature; at least that’s how he comes across in his comments. Certainly, he appears never to have dealt with any transplant patients.

    It must be nice to be so superior to all us other humans and never think thoughts like that even when facing the death of a loved one.

  11. wdygyp says:

    Interesting reactions. I hadn’t expected that, especially not the personal attacks coming from David Gorski. That much for discussion culture.
    Maybe it is just a cultural divide, but a voluntary organ donor is in no obligation to provide, so any calls/wishes/hopes that he finally die are uncalled for (if explicable by irrationality), and in fact, contradict the term “donation” in itself. It hints at what some people opposed to organ donation call the commodification of human life.

  12. windriven says:

    This series has raised a number of interesting questions given the paucity of organs for transplant, the high cost of medical care especially at the end of life, and the notion of an advocate or quarterback to coordinate care.

    When is a given amount of care enough? When the chances of success are 40%? 41%? And how shall success be defined? Six months? Five years? In Jobs’ case money wasn’t really an issue. But the liver was because it is an extremely scarce resource.

    In the broader health care delivery system, money is an issue. During the health care debate a couple of years back, Republicans raised the specter of ‘death panels’ to scare the bejesus out of anyone thinking reform might be a good idea. But the fact is that there are not now and there are never going to be sufficient health care resources to give everyone every long shot opportunity for survival.

    On the other hand, some treatments that are commonplace today were once novel, risky and expensive. Those treatments never have a chance to become cost effective and commonplace if they are never tried, never used. Kidney transplantation began in the 1950s fraught with the peril of organ rejection. This year there are over 100,000 people on waiting lists in the US for a kidney transplant.

    What can science based medicine suggest for the best ways to apportion scarce health care dollars? Should we embrace the Atlas project out of Dartmouth or some other best practices model? Or will that lead to stenosis of medical innovation?

  13. icewings27 says:

    Forgive my ignorance in asking this question, Dr. Gorski. You established that alternative medicine probably neither helped nor hindered the course of Steve Jobs’ cancer. My question is, how much did the medical treatments he finally got help him? Would he have died a lot sooner and/or suffered a lot more without them, or did they make little or no difference to his quality and quantity of remaining life?

  14. “but a voluntary organ donor is in no obligation to provide, so any calls/wishes/hopes that he finally die are uncalled for (if explicable by irrationality), and in fact, contradict the term “donation” in itself.”

    As someone with donor permission on my DL as well as a clear understanding of my approval of donation with my husband, I felt not one wit of discomfort or pressure to hurry up and die when reading the comments in question.

    I figure, if I can’t use it, I want someone else to. Perhaps my last little FU to death. “Oh yeah, you might get my brain, but my liver (kidney, eyes, etc) lives! hehehe.

  15. David Gorski says:

    Well, certainly the liver transplant prolonged Job’s life by around two to two and a half years, depending on whether you go by recurrence or when he actually died (he did recur only roughly 20 months after his transplant). The book describes how Jobs was deteriorating fast in March and April 2009 and would almost certainly have died then if he hadn’t received a liver when he did or, at most, within a month or two later. If that characterization is accurate, it’s not unreasonable to debate whether it was worth it to use a precious organ for a cancer patient at a very high risk of recurrence after transplant when the organ could potentially result in decades more life if given to a patient with end stage liver failure from a non-cancer cause, but that’s more of a moral and financial than a scientific or medical argument.

    As for the rest, it’s almost as hard to say as whether the delay in surgery harmed him. For one thing, we don’t know which targeted therapies he received and what, if any, response he had to them. The book is surprisingly vague on that issue. Although it reports that Jobs got a series of targeted therapies, it doesn’t say what those therapies were. Cancer docs like myself would, of course, want to know, but I’m guessing Isaacson understands that a general audience probably wouldn’t be particularly interested.

  16. ConspicuousCarl says:

    I heard Penn Jillette note that “hoping” doesn’t work, so you don’t have to feel bad about whatever you were hoping for.

  17. wdygyp says:

    ConspicuousCarl wrote:
    “I heard Penn Jillette note that ‘hoping’ doesn’t work, so you don’t have to feel bad about whatever you were hoping for.”

    I know that hoping for or against something doesn’t influence the likelihood of occurrence (placebo/nocebo effects possibly excluded) and thus an act of symbolism, just as calling someone an “asshole” doesn’t actually turn one into one. If I had the choice, however, I would choose not to donate my organs to somebody apparently holding my life in disdain, if only collectively.

  18. daedalus2u says:

    It also may have been that when they opened him up for the transplant and found the metastases that there were no other compatible candidates reachable in time.

    What would have been ghoulish would have been if Jobs had donated a few million for liquor at the March Madness parties, even though it is my understanding that liquored up organs don’t transplant as well.

    Morality and ethics aren’t about one’s hopes, they are about one’s actions. When they do HIV prevention studies, they “hope” that enough people will get HIV to give them statistical significance, even as they actively try to keep everyone from getting infected by advising everyone how to avoid becoming infected and give them as many free condoms as they will take.

    I have a question about this specific type of tumor. Would this tumor likely be cross-reactive with the auto-immune activity that has ablated the beta-islets in people with diabetes type 1? Is is possible/likely that people with diabetes type 1 are survivors from this type of tumor that their immune system successfully dealt with, but at a cost of diabetes type 1?

  19. wdygyp says:

    daedalus2u wrote:
    “Morality and ethics aren’t about one’s hopes, they are about one’s actions.”

    Expressing one’s hopes is an action/act of symbolism. If they had kept their hopes secret, no matter how ineffective that would be, we would never know and have this resemblance of a discussion, assuming the book is telling the truth.
    This semantics game is becoming silly.

  20. @wdygyp, Oh, it’s not that they hoped. It’s that they were honest about hoping. If they lied and insincerely said they didn’t hope, they would be decent people who deserved your organ donation?

  21. wdygyp says:

    micheleinmichigan wrote:
    “If they lied and insincerely said they didn’t hope, they would be decent people who deserved your organ donation?”

    That depends on whether you follow the consequentialist school of ethics like daedalus2u does or a deontological one. In this case, this would have practically made no difference as they would have kept their mouths shut instead of going around telling everyone how they do not hope for the timely demise of compatible donors.
    If I may answer that question with a counter question: Is an insult that is only thought but never communicated still an insult?

  22. “If I may answer that question with a counter question: Is an insult that is only thought but never communicated still an insult?”

    I don’t know. Doesn’t matter much to me since I don’t wish for the donation of my organs to be conditional upon how much I approve of the recipients friends and family’s manners.

  23. Josie says:

    If I am in need of a transplant and I gather statistical data across the US on deaths from misadventure is it wrong to hope that I make the best choice for lowest wait time?

    By maximizing my chances based on statistical evidence and hoping my math is correct should I be accused of hoping for someone else’s death?

    From the sound of it that’s really all Steve and his family were doing.

  24. superdave says:

    From what I am reading about Jobs it really sounds like he was obsessed with finding a beautiful and elegant solution for everything. He hated kludge solutions, which is what the whipple procedure sounds like to me. I can understand is aversion to it on those grounds. I can’t fault a guy who lived like steve jobs for dying like steve jobs.

  25. wdygyp says:

    micheleinmichigan wrote:
    “Doesn’t matter much to me since I don’t wish for the donation of my organs to be conditional upon how much I approve of the recipients friends and family’s manners.”

    Are you trying to insinuate that I do? If yes, I never stated that. If you think otherwise, reread the relevant posting. And just to be clear, I don’t know whether Jobs thought the same way his friends purportedly did, so I have no opinion on Jobs himself.

  26. lilady says:

    Unlike Dr. Gorski, I haven’t actually been part of a surgical transplant team. I did, however, consent to the removal of my son’s eyes and heart valves after his death and have spoken with other families who consented to tissue and organ donations.

    I’ve met and spoken to recipients of donor and tissues and they believe they were given the gift of life. I tell them that we were given a gift…we were given the opportunity to donate my son’s eyes to restore vision and to donate his heart valves to mend diseased hearts.

  27. tmac57 says:

    I was wondering how people might feel about the following idea:
    Since there is a great need for organ donors,and that need is going under-fulfilled,would it make sense to change the recipient selection procedure to include an upgrade in their ranking based on if they themselves were a nationally listed organ donor? Surely,the way to encourage organ donation in a fair way,would be to tell the world that ‘If you want to improve your chances of getting an organ donation in the future,then you must be willing to participate by willing to be a donor now.
    This wouldn’t necessarily be an automatic exclusion for receiving a donated organ if you weren’t a donor,but would give you an edge of some magnitude,if you were.
    What do you think?

  28. daedalus2u says:

    tmac57, there are some people who cannot be organ donors even if they were willing to be an organ donor.

    People without health insurance can’t be organ recipients. They can’t get in the queue, they can’t afford the cost, they can’t afford the anti-rejection meds.

    How about everyone willing to be an organ donor gets free universal single payer health care? That would reduce the number of non-donated organs considerably.

  29. David Gorski says:

    People without health insurance can’t be organ recipients. They can’t get in the queue, they can’t afford the cost, they can’t afford the anti-rejection meds.

    Not true. Medicare and Medicaid pay for organ transplants and the immunosuppressants necessary afterward. If you don’t have health insurance, you can get Medicaid if you’re willing to spend your resources down to the point where you’re “poor enough” to qualify, and a lot of people do just that through paying medical bills incurred during the course of their liver failure treatment.

    Granted, the system is straining. The recent action by the state of Arizona to cut back on transplants for Medicaid recipients is evidence of that. But Arizona did cover them and will cover some of them again. In the rest of the country, Medicaid does pay for most transplants.

  30. oh, Did I misread? I guess I don’t understand how your comment “If I had the choice, however, I would choose not to donate my organs to somebody apparently holding my life in disdain, if only collectively.” Is relevant. What recipient holds your life in disdain?

    It still doesn’t matter to me since I also don’t wish to make my organ donation conditional upon the manners of the recipient.

    Regardless, oh person living without vowels, If you’re next on the list and you are a match, you can have my squishy bits.

    Just throw my brain in a hurricane…

    I’ll stop bugging David Gorski with the irrelevant discussion now.

  31. wdygyp says:

    micheleinmichigan wrote:
    “I guess I don’t understand how your comment [...] Is relevant.”

    I moved from the specific case away to a general one in order to show that mere acts of symbolism, such as verbal insults, do indeed warrant moral considerations. Try to put my comment in context to the posting I was referring to.
    Unlike you, I do not pollute this comment section with cutesy ironic drivel (e.g., “Just throw my brain in a hurricane…”).

  32. David Gorski says:

    Try to put my comment in context to the posting I was referring to. Unlike you, I do not pollute this comment section with cutesy ironic drivel

    Instead you appear to prefer to choose to pollute your argument with self-righteous sarcasm, oh-so-superior condescension, and thread hijacking.

  33. tmac57 – While I could imagine some benefit from your idea, I do have some concerns. My two immediate reactions would be these. One, where does that leave people who have health conditions that rule them out as donors? Two, wouldn’t that end up being more of a organ exchange club, rather than a public organ donation system? My visceral response to an organ donation club is not as good as an organ donation system. I prefer that my organs be distributed purely based on need, likelihood of an acceptable outcome, and practical considerations (such as distance).

    On the other, I don’t feel that being registered as a possible donor gives me any special rights to rule the system. I feel I need to trust doctors and medical ethisists who have more experience considering such things.

    I don’t want to sound overly critical. I do like DU2′s idea of offering healthcare to donors, but if we had universal healthcare, as I’d like, we wouldn’t have that carrot.

    I’m a big fan of stealing useful techniques. I wonder if there are strategies we could steal from countries that have higher donor rates. It’s not something I’ve had the time to look into.

  34. tmac57 says:

    Michele- I wanted to get the idea out there to generate the pros and cons,so thanks for the input.
    Somehow we need to encourage organ donation,and I have a problem with the idea that there are viable donors out there who are unwilling to be a donor,but who would fight tooth and claw to get a donated organ if the day came that they needed one.That just does not seem fair.
    As for the people who cannot be donors,I think an exception could be made.That was the point of me posing the question,to make people think about the problems and solutions.

  35. David Gorski says:

    I realize that this sounds heretical (at least in the U.S.), but I wouldn’t be opposed to a mandatory system, where the default is that you are an organ donor unless you obtain a religious or philosophical exemption. It’ll never happen, but it would probably reverse the organ shortage very quickly. I know, I know, too utilitarian.

  36. wdygyp says:

    Any kind of organ exchange program couldn’t rightfully be called “donation”, not that this is necessarily a bad thing.

    David Gorski wrote:
    “Instead you appear to prefer to choose to pollute your argument with self-righteous sarcasm, oh-so-superior condescension, and thread hijacking.”

    Chiming in to personally attack me again, even though I was not even “talking” to you? That says a lot about you, especially in reference to any alleged “hijacking”. Particularly you have, unlike me, chosen to avoid any rational argumentation and called me “self-righteous” and other insults instead.
    I find these reactions very interesting, because I had not imagined that a clique would be defending what I consider to be clearly a macabre and disrespectful act for any prospective organ donors and humanists in general.

  37. Josie says:

    I happen to agree with you David. I hate the thought of waste. If some of my organs are still intact after I die have at ‘em.

    the Klingons have it right –the body is just an empty shell after death. :)

  38. Regarding the opt-in, opt-out system. I had assumed that an opt-out system would automatically increase donor rates, but when I looked it up to check before posting on a previous thread, Wiki claimed that when comparing countries with different systems, opt-out wasn’t a reliable predictor of donor rates (my reading).

    http://en.wikipedia.org/wiki/Organ_donation#Opt-in_vs._opt-out

    That surprised the heck out of me.

    Of course there’s lots of factors, so an opt-out system could still increase donor rates in the U.S. (?)

    Perhaps a future topic for some blog post somewhere.

  39. tmac57 “That was the point of me posing the question,to make people think about the problems and solutions”

    Yes, I like that, a very thought provoking question.

    Sometimes, you just want a like (or dislike button).

  40. ConspicuousCarl says:

    daedalus2u on 31 Oct 2011 at 7:37 pm

    How about everyone willing to be an organ donor gets free universal single payer health care? That would reduce the number of non-donated organs considerably.

    Good moral math, but bad financial and logistical math. Suppose everyone signs on for this offer, where do we get the money (and doctors/hospitals) to fulfill it?

  41. ConspicuousCarl says:

    micheleinmichigan on 01 Nov 2011 at 12:30 pm

    Regarding the opt-in, opt-out system. I had assumed that an opt-out system would automatically increase donor rates, but when I looked it up to check before posting on a previous thread, Wiki claimed that when comparing countries with different systems, opt-out wasn’t a reliable predictor of donor rates (my reading).

    http://en.wikipedia.org/wiki/Organ_donation#Opt-in_vs._opt-out

    That’s the impression the Wikipedia article seems to present, and at least one of the 2 cited papers has text saying so. IMO, the text of Wikipedia and the papers cited seems to emphasize specific or unique situations which aren’t in line with the appearance of a general trend.

    The graph on page 23 of this paper…
    http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_090303.pdf

    …doesn’t show a huge range of donation rates, but there does also seem to be a fairly convincing trend of opt-out countries being towards the top of the scale, even though the range is narrow. I wish I knew a lot more about Spain’s laws and culture to know what their tricks are.

    The chart at the bottom of page 1 of this paper makes it look like a huge difference, though I am not sure what the difference is in their selection criteria:
    http://webs.wofford.edu/pechwj/Do%20Defaults%20Save%20Lives.pdf

    My reading is that the source claiming that there isn’t an effect actually shows that there probably is, even though it can be over-ridden by local factors. In the inverse of the well-known concept of a hidden confounding factor making data falsely look as though there is a strong correlation, it can also be true that a large number of real cause/effect mechanisms can be dampened in appearance by a random mix of multiple conditions in each subject.

    I think there is a pretty strong scientific basis for the idea that people tend to role with whatever is the default condition, and the data available does seem to suggest that opt-out policies can result in more organ donations, even if the effect is small.

    In my opinion, the religious- and conspiracy-based objections to opt-out systems are not rational in the least, so I think there is no reason why switching to opt-out shouldn’t be part of a multi-pronged effort to improve things.

  42. daedalus2u says:

    From the savings from single payer. Cut out the insurance companies and the cost of US health care drops to that of the rest of the world (about in half) but everyone is covered.

    The elderly are covered by Medicare now, and the elderly are by far more expensive than younger people. Something like half the per capita medical expense occurs after age 65. But that is already covered by single payer via Medicare, so it isn’t subject to savings via transition to single payer.

    The only reason that the US doesn’t have single payer health care is because the insurance companies have the profits to lobby Congress, and it is easy to convince conservatives and libertarians that nothing should be “free” except their tax cuts and subsidies. If someone is willing to be an organ donor, they are not a freeloader. It is those who want to receive organ transplants without paying the reasonable fair cost that are the freeloaders.

    How about all people willing to be organ donors band together and charge all health care providers that do transplants what ever it costs to provide health insurance to the members willing to be organ donors. If a health insurance company wants to provide health insurance that covers transplants, then they have to pay into the fund that covers the potential organ donors.

    If you or your health plan or health insurance company is not willing to pay for the health insurance of potential organ donors, then you really don’t want to pay your fair share for receiving an organ transplant and shouldn’t get one.

  43. lilady says:

    I never found out who received my son’s donated eyes and heart valves…it just never mattered to me. My daughter who received a cadaver ACL (anterior cruciate ligament) during surgery for a devastating knee injury, was told that the donor was an eleven year girl.

    There are “other” ways to donate to save a life, by being listed as a peripheral stem cell blood donor or a bone marrow donor. I am on the registry of the National Bone Marrow Donor program because I donated platelets frequently through my local blood bank. If I am ever “matched” to a person in need of these life-saving treatments, I won’t be asking if the person meets my personal criteria for worthiness.

    I agree with Dr. Gorski, that an “opting out” program to possibly increase the availability of organs and tissues is a great idea. In the meantime, I’ve “opted in” by signing the back of my driver’s license. My husband and daughter have also “opted in”.

  44. colincbn says:

    Let me give you a quote from a very wise man on why treating disease with woo is always a bad Idea:

    “Alternative medicine that is ineffective is not harmless”

    “Patients who choose implausible or unscientific treatments in preference to proven treatments suffer, but they are not the only ones who suffer the consequences of their choice. It’s also their families and friends, who watch them die from potentially curable diseases (all too often draining their life’s savings along the way). It’s children who lose their parents and men and women who lose their spouses. Indeed, it’s all of us, who fund these ineffective treatments or end up paying more through taxes and insurance when a patient who might have been treated more effectively and inexpensively requires much more difficult and expensive treatment because of a delay caused by the pursuit of ineffective therapies and false hopes, who suffer as well.

    Alternative medicine that is ineffective is not harmless.”

    When you wrote this about an unknown man who was victimized by snake-oil salesmen you were 100% correct and thinking with a clear head.

    Unfortunately it seems that many very smart and very wise people are so enamoured of the late S. Jobs that even they can be blinded by fandom. I liked him too but bending over backward to say his journey into woo was somehow acceptable is just plain wrong. You must realize that you are essentially telling other patients who have this kind of cancer it is ok to put off surgery for almost a year and try alternative “magic cures”. If you tell someone who is apt to try diet over SBM that nine months probably wont make a difference what do you think they will do? All the SMB haters who have attacked you personally for your work against quackery will now point their “clients” (read: victims) to this blog and say “see even this shill admits it is ok to try our magic first”.

    And for what? What is so important about lambasting other skeptics like Brian Dunning for the small evil of editorializing that makes up for those people who will come away from this blog thinking it is ok to delay needed surgery because even if the woo is just woo it won’t hurt to try it out for a bit. Is it so important to revere this man that it is ok to throw away all of the principals this website was founded upon?

    For shame.

  45. David Gorski says:

    I lost track of the number of straw men in your criticism. There were quite a few.

    Where, I ask you, did I say it was a good idea or that his journey into woo was “acceptable”? Nowhere, that’s where.

    Where did I say or imply that I revere Steve Jobs so much that I suddenly decided that woo was “acceptable” because he fell for it for several months? Nowhere, that’s where. You read into my post what you wanted to attack.

    As for your bit about my supposedly saying that waiting nine months won’t make a difference, that’s another straw man. It’s not what I said. What I said was:

    Does any of this mean that it was a good idea (or even just not a bad idea) for Jobs to have delayed having surgery for nine months? Of course not. Again, surgery was his only hope for long term survival. However, as I’ve pointed out before, chances are that surgery right after his diagnosis probably wouldn’t have saved Jobs, but there was no way to be able to come to that conclusion except in retrospect, and even then the conclusion is uncertain.

    Note how I point out that there was no way to come to that conclusion except in retrospect.

    Seriously, dude. You need to chill out a bit. You completely misread much of what I wrote in this post, so much so that I question whether you actually read more than a small part of it or only skimmed it superficially. Certainly your criticism shows no sign that you did. Everyone else seemed to understand the point; I’m not sure why you didn’t understand that there is no contradiction between these more recent posts on Steve Jobs and my previous posts. There is simply an understanding of cancer biology and a belief that representing anything other than the best interpretation of the evidence and what we know about a case like Jobs based on the accounts available and the science we currently know. Sorry I didn’t write what you wanted me to write. (Actually, no I’m not.) I wrote what I believed, based on the evidence I could gather and what I know about cancer biology. That’s all my readers ask of me, and, more importantly, it’s what I demand of myself.

  46. colincbn says:

    Actually yes I did read every word you have written and I don’t disagree with any of your explanations. You are a respected doctor who has worked with cancer for many years and obviously know much more on the subject than I ever will.

    What I am saying is why write three articles strongly asserting that “it *probably* did not make a difference” when it is also possible that it did?

    Note, I am not saying it did, I accept you are right about that, it probably did not. I’m just saying that the damage done by emphasizing to every reader, and detractor, of this blog that waiting nine months before undertaking a surgery that could have saved his life *might* not have made a difference is a bad idea. And you could just have easily emphasized that it *might have* made a difference.
    The tone you set in these pieces is clearly directed at writers like Dunning who so quickly jumped to put S.J. into the “list of celebs that died from woo”. Which I agree is obviously wrong. However, In your first post after his unfortunate death you wrote in the section “The war to claim Steve Jobs’ narrative” three paragraphs concerning Adams and Mercola and how they claim “conventional medicine killed him” and six paragraphs bashing Dunning and others for blaming his death on quackery. Now I freely admit they were wrong to do so. But I felt then, and still feel now, that you are being way to heavy handed against those who would detract from S.J.’s memory by claiming he was foolish to try diet and acupuncture and far too lenient towards him for trying it.

    From that post:
    “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. ”

    “Didn’t do himself any favors”? That is a pretty light criticism for potentially contributing to your own death. “Easy to overstate the potential harm”? If the potential harm is an early death it is pretty damn hard to overstate that.

    I would never dream on debating you on issues of cancer biology, you are an expert and I am not. It would be entirely foolish. That is why I get my medical advice from experts like you and not snake-oil salesmen. However you have let this guy off pretty light for doing something you would never advise one of your patients to do. I am positive that if someone consulted you today with the same form of cancer at the same stage of development you would use the strongest terms possible to discourage them from waiting before having surgery. Because that is their best chance for survival.
    By definition if it *might not make* a difference than it also *might make* a difference. And we should always err on the side of caution.
    All I am asking is that you not go light on Jobs for making what was without question a bad mistake. Even if he would have died anyway we can never know that (as you have said) so there is no reason not to call his terrible mistake what it was.
    I would also direct the “chill out dude” right back at you.
    I never said you “suddenly decided that woo was acceptable” so the straw man thing goes for both of us I guess. And perhaps my wording was faulty when I grouped you with the many people who have been “bending over backward to say his journey into woo was somehow acceptable” when I said that. I just feel if you are going to write a blog on science based medicine you should make very sure everything you post advises the best possible practices, yet your posts on the subject have focused much more on how it is *likely* Jobs did not hurt himself by using woo. I guess I was not clear enough, my apologies.

  47. pmoran says:

    All I am asking is that you not go light on Jobs for making what was without question a bad mistake

    You are right to the extent that it is always a mistake to rely upon “alternatives” alone for operable, potentially curable, primary cancer. The cancer will almost always progress.

    But on a science-based forum we cannot say that Jobs died because of that mistake. He had an aggressive variety of a rare cancer and we cannot say at what point metastases occurred.

  48. colincbn says:

    Of course not. He died because he had cancer. And it is tragic that the world lost such a man at such a young age. I just feel the writers on this site should make every effort to be clear that a nine month, or even a one month, trial of non-science based medicine is *always* a bad idea. And that “Alternative medicine that is ineffective is *not* harmless”.

    I feel in the posts on this subject by Dr. Gorski he has shifted from that position somewhat and I don’t understand why. Of course we can’t say it did kill him. But we can’t say that anyone who tried woo instead of SBM and subsequently passed away would not have died anyway. The “Orange Man” might still have needed a colostomy bag, Pati Davis may still have died at 39. We can’t really say that they would not have, just like we can’t say S.J. would have lived longer had he opted for surgery immediately. And I am aware in both those cases the statistics are much clearer than in Jobs’ case. I completely understand why Dr. G. has been clear that with the kind of cancer Jobs had it may well have not made a difference.

    But it might have.

    And if you cannot say unequivocally that his nine month wait did not contribute to his death why would you do anything but condemn it?

  49. @ colinBC – My understanding is that DG was giving us his expertise and tying to be accurate as possible.
    Here is the explanation from DG’s first entry on the topic “For as much as the quacks are trying to claim that they could have cured Jobs if only they had given them the chance, there is, however, the chance of taking the opposite argument, namely that Jobs might have died because of his embrace of non-science-based treatments, too far in the other direction. Unfortunately, there is a skeptic who should really know better who did 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, and 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):”

    What I gathered from the article was, if Steve Job’s medical history indicates that his tumors had probable started to metastasis before his diagnoses, then a quicker surgery wouldn’t have prevented metastases. “Or, on the other hand, chances are very good that those liver metastases were there nine months before. Insulinomas tend not to grow so fast that they can progress from micrometastases to metastases visible to the surgeons in that short a period of time. So, while on the surface this revelation would seem to the average lay person to indicate that Jobs’ delay very well might have killed him, in reality, thanks to lead time bias, it probably means that his fate was sealed by the time he was diagnosed. ”

    If DG feels that SJ fate was probably seal at the time of diagnoses, then I don’t think it would be honest or appropriate to emphasis that the delay before surgery MIGHT have killed him. To me it would sound like slanting the facts to convince people to do what you think they should. I hate that, particularly in medical folks.

  50. It not clear, the second quote is from this article.

  51. David Gorski says:

    Of course, nowhere did I condone or even give the hint of condoning Jobs’ behavior or saying that delaying surgery for cancer is a good (or even neutral) thing. All I pointed out was that, in retrospect in Steve Jobs’ specific case we cannot say with any confidence that a nine month delay in surgery harmed him. Rather, we can say that, based on what we know from the biography, the delay probably did not. I’ve also pointed out multiple times that at the time of Jobs’ diagnosis and subsequent flirtation with quackery there was no way of knowing that the delay would probably not be harmful and, that based on examples of many other cancers for we know that delays like that could very well be harmful, the most rational, science-based course of action would have been to undergo surgery expeditiously.

    That’s why I remain rather puzzled by colincbn’s entire line of criticism, actually. He seems to be agreeing that my analysis of Jobs’ case is sound from a medical and scientific viewpoint but is nonetheless pissed off at me. He seems to think that I shouldn’t have posted it because it might dilute the purity of SBM’s antiquackery message. What would he have me do? Post something that’s scientifically not well supportable, as long as it fits with the “message”? Or not post it at all because doing so doesn’t fit with the “message”? Sorry, I opt for neither option, particularly jumping on the “alternative medicine killed Steve Jobs” bandwagon. I say this even though I would have had a lot passion and been able to make a much stronger point if I had been able to hop on that bandwagon, because I really, really detest cancer quackery and know how much harm it causes.

  52. weing says:

    We cannot say that his use of empowering magic, aka CAM, prior to getting real treatment led to his death. We can certainly say that it didn’t help.

  53. ConspicuousCarl says:

    colincbn on 02 Nov 2011 at 5:04 am
    And if you cannot say unequivocally that his nine month wait did not contribute to his death why would you do anything but condemn it?

    There must be some quantum physics mechanism which causes complex information to always weigh less than simple information. I could ask Stephen Hawking if this observation has any implications for the stability of black holes, but that guy talks too god damned much.

  54. pmoran says:

    And if you cannot say unequivocally that his nine month wait did not contribute to his death why would you do anything but condemn it?

    Condemn what? The treatments? The quacks who helped Jobs believe that might save him? I think David has done that.

    It is trickier condemning Jobs himself for his gamble. If at the time of diagnosis he already required a Whipple procedure, then he was presumably advised that he had about a one in twenty chance of not even surviving the first month. If he developed complications from the surgery he might spend months in hospital. He may also never have a good quality of life again after the drastic rearrangement of his innards.

    We also live in an age of entitlement. One of the reasons that people consider trying CAM for cancer is wishful thinking: “this is ME! Is there nothing better than this? After all the crowing about the successes of scientific medicine and the puffery in the daily press about the latest great cancer discovery, when it comes to the crunch THIS is all they have to offer for a possibly benign tumour?”

    So it is reasonable to temper such judgments with some awareness of what we ask of our patients.. (Think also about the woman with the tiny painless breast lump who faces several rounds of surgery, weeks of radiotherapy, months of chemotherapy and some long-term morbidity from all that. Does that seem right to you? Of course, if we are to save every life we can, as is our job, it IS right, but it is no wonder that some women balk at all this. We should offer them all the options we can.)

    Jobs may also have been advised that he had a type of cancer that is usually non-metastasising and slow growing and on that basis allowed business commitments to take precedence, and merely allowed the time to get away from him with his undoubtedly pressing business commitments. (I don’t know that all the above fits the exact facts, but you may get the drift.)

  55. isletcellterry2006 says:

    Since I have been living with a low grade glucagonoma (Pancreatic Neuroendocrine Tumor, aka PNET with liver and colon mets) for the last 5+ years, I thought I might comment about what I’ve read in this thread. I’m not a touchy feely guy. I try to approach this cancer as a technical problem to solve. I’m just trying to make the best of my incurable disease. Comment #1.) Neuroendocrine tumors come in various grades, and this grade isn’t known for Mr. jobs. A well differentiated tumor tissue means it is low grade. Poorly differentiated means it’s high grade and can be very aggressive, as aggressive as adenocarcinoma of the pancreas. Mr. Jobs was probably in the low to medium grade based on his longevity. Comment #2.) My understanding is glucagon is produced by the pancreas, not by the liver. A glucagon release by the islet cells in the pancreas signals the liver to convert glycogen to glucose to raise the blood sugar level. Comment #3.) I wonder how long Mr. Jobs was provided nutrition via TPN (Total Parenteral Nutrition). TPN is hard on the kidneys, and I have been steered away from using it in the past. Initially, Mr. Jobs was having a CT scan of the kidneys for some diagnostic reason. Who knows how this may have influenced his health. Comment #4.) The doctors don’t need to wait for the patient to “feel the pain” before looking for recurrence/tumor growth. Several blood tumor marker tests are available (Chromogranin A, Serotonin, and Pancreastatin, etc.) to indicate tumor load and signal increasing tumor activity.
    Comment #5.) There is a recent study of many foods that can be called cancer preventers or are capable of slowing the development of cancers. Tumeric falls into this category. A video presentation can be found at http://www.ted.com/talks/lang/eng/william_li.html if you would like to read it. All these food types perform their anti-cancer powers because they are anti-angiogenics (suppress the formation of new blood vessels). Any tumor larger than 2 mm requires its own blood supply. That’s why the claims have some basis in fact. The question is, “How much of this stuff need one consume to gain the intended benefit?” Powdered black raspberries mixed in water is a popular drink for us NETs patients to help control diarrhea, and for a very few people they actually exhibit reduced tumor size. Sweet leaf green tea is another natural drink with similar properties, but way expensive. Comment #6) There was some indication in the write-up implying that dumping is a result of pylorus removal. Well, I still have all my parts and I have had the dumping issue for longer than I’ve been diagnosed. Yet, I am sure removal would exacerbate the issue. Comment #7.) I didn’t see any mention of the PRRT (Peptide Receptor Radionuclide Therapy) Mr. Jobs received in Switzerland. This is a pretty common, and effective, treatment based on health status and financial ability to pay out-of-pocket. PRRT is not yet FDA approved in the U.S., and is now only in the trial stage here. Comment #8.) Having a coordinator for physician coordination of this disease (I have 7 at the moment in four different disciplines.) would be nice, but most of us find we must perform that function ourselves for full advantage. And by-the-way, HOPE is not a method of treatment if you expect to maximize your “time at the dance”.

  56. David Gorski says:

    He may also never have a good quality of life again after the drastic rearrangement of his innards.

    And, according to the biography, Jobs was never quite the same again after the operation. After a Whipple, it can be difficult enough to keep up one’s nutrition as it is, and Jobs was a very strange eater, at times adhering to a strict vegan diet, at other times eating the same thing for weeks on end and then suddenly declaring that food to be disgusting. No wonder he lost so much weight after his surgery before his tumor even recurred. There’s a fair amount of verbiage devoted to Jobs’ obsessive eating habits and how they combined with his surgery to make it very difficult to keep his nutrition up. At one point, the family hired a personal chef to try to coax Jobs to eat.

  57. Badly Shaved Monkey says:

    Points of clarification and expansion, please, Dr G.

    In your blog, you refer to Steve Jobs’s tumour as an insulinoma, but Isaacson’s book, as you note, reports he was getting into trouble from glucagon secretion by his liver mets. Is your referring to it as an insulinoma a moment of brain-fade whereas it should be referred to as a neuroendocrine tumour, or can insulinomas start secreting glucagon?

    The book describes trying to antagonise the glucagon to control his rampant gluconeogenesis. Any idea how they would do that?

    Where would all the pain have come from prior to him having horrible mets in distant organs and bones? Is the presence of a met in the liver enough to cause the kind of debilitating pain that he clearly had?

  58. isletcellterry2006 says:

    Dear Badly–,
    To help Dr. G, there is a good reference book, “Neuroendocrine Tumors – A Comprehensive Guide to Diagnosis and Management”. It’s free from Intersciences Institute, Inglewood, CA, 800-255-2873 or http://www.intersciencesinstitute.com. It was written by several of the leading neuroendocrine experts in the U.S. To your question, there are several sub-types of neuroendocrine tumors of the pancreas, depending on the secretion. Insulinomas produce insulin, glucagonomas produce glucagon, etc. Others are Somatostatinoma, Enterochromaffin, Gastrinoma, PPoma, Grehlinoma. Occasionally/rarely, the tumors do change their production of the various hormones.
    My personal opinion about liver mets and pain is that it is possible to have pain, but I would suggest it depends on where the liver lesions are located and the liver tumor load. At about 15% load, I have no pain.

  59. David Gorski says:

    I didn’t see any mention of the PRRT (Peptide Receptor Radionuclide Therapy) Mr. Jobs received in Switzerland. This is a pretty common, and effective, treatment based on health status and financial ability to pay out-of-pocket. PRRT is not yet FDA approved in the U.S., and is now only in the trial stage here.

    That’s because I mentioned it in one of my earlier posts on the topic and didn’t see a need to mention it again. Also, I didn’t consider it to be woo, just experimental (which it largely is).

  60. David Gorski says:

    As for the glucagon issue, I’ll have to go back and look at the biography (which is at home), as I don’t remember. Jobs did, however, have an insulinoma. That much I do remember, and it’s documented in many places, including Isaacson’s biography of Jobs.

  61. Badly Shaved Monkey says:

    Thanks Dr G. I look forward to your further thoughts.

  62. exazonk says:

    Hi @colincbn,

    I think you hit the nail on the head.

    “What I am saying is why write three articles strongly asserting that “it *probably* did not make a difference” when it is also possible that it did?”

    Thanks for taking the time to comment especially when it goes against such an extremely knowledge person.

Comments are closed.