Steve Jobs’ Cancer Denial

Steve Jobs Cancer DenialThe 60 minutes interview with Steve Jobs’ biographer is an intriguing piece that gives us a few insights into Steve Jobs and his battle with pancreatic cancer.

But the most disturbing part of the interview for me was watching Walter Isaacson, a former editor of TIME Magazine, talk about how Jobs was in complete denial about his cancer.

Rather than seek immediate modern cancer treatment once diagnosed, he turned to a holistic, macrobiotic approach. That approach delayed treatment 9 months.

Whether it may have been “too late” is hard to say after-the-fact. But if you delay any cancer treatment, the results are rarely good. In Steve Jobs’ case, they may have been untimely — and fatal.

The cancer that was to kill him was discovered accidentally when Steve Jobs was being seen for kidney stones back in 2004, according to the CBS News report. Once the doctors found the cancer and do a biopsy, they tell Jobs the good news, “This is good… this is one of those slow-growing, 5% of pancreatic cancers that can actually be cured.”

But Steve Jobs doesn’t get the cancer operated on right away.

“He tries to treat it with diets, he turns to spiritualists, he goes through various ways of doing it macrobiotically,” according to Isaacson. “And he doesn’t get an operation.”

“By the time they operate on him [9 months later], they notice it has spread to tissues around the pancreas.”

Steve Croft: “How could such a smart man do such a stupid thing?”

“You know, I think that he kinda thought that if you ignore something, that if you don’t want something to exist, you could have magical thinking. It had worked for him in the past.”

The worst part, for me, was that even though Steve Jobs continued seeking secret cancer treatments, he was telling everyone he had been cured, according to the CBS News interview. And that’s what people believed — including Apple stockholders — until 2008, when they saw how much weight he had lost at a public Apple event.

Jobs, in his role as a technology superstar, could’ve also taken on the role as a health advocate rockstar. Instead, for 7 years, he sought to constantly hide and downplay his health problems.

So while I admire his marketing and product management savvy (sorry, Jobs was never a technologist), I feel a little disappointed in the way he dealt with his own health concerns. Instead of talking about them openly and publicly — and helping others understand there’s nothing to fear about doing so — he felt like he was so “special” he was going to beat cancer with his magical thinking.

I admit there’s a delicate balance between celebrity and advocacy… But it seems like, if you’re a celebrity, you get to a point in your life where you can use your celebrity and its influence to actually help others in a very humanitarian and altruistic manner by simply acknowledging the plain facts and talking about your battle with cancer publicly. This is something e-Patient Dave does every year. It helps others understand and feel safer to acknowledge their own foibles, and seek out diagnosis, care and treatment.

We all know the sad ending to this story, and I find little joy in writing these words.

But I write them to remind every one of us — myself included — that we need to stop the magical, psychological thinking… That every one of us is somehow “special” and can beat cancer through positive thought alone. Positive thought is very beneficial and helpful in medical treatments. But it cannot — alone — beat cancer. It must be combined with the best medical treatments we have available.

Together — through mind and body — cancer can be beaten. Sadly, Steve Jobs did not understand this until it was too late. Hopefully someone out there reading about his story will be moved to not wait to get treatment.

* * *

In the CBS News interview, biographer Isaacson describes what Steve Jobs had as “pancreatic cancer.” MedPage Today contributor Michele Berman, MD begs to differ:

Steve Jobs most likely had an islet cell neuroendocrine tumor, a neoplasm that is considerably more rare than pancreatic adenocarcinoma, is usually detected earlier, and has a better prognosis and different treatment options, including liver transplant. Mr. Jobs’ liver transplant was performed about 17 months ago at Methodist University Hospital in Memphis because he was the sickest patient on the waiting list and had the highest MELD score (Model for End-Stage Liver Disease). Mr. Jobs subsequently urged everyone to become an organ donor.

To me, this is a bit like splitting hairs. I’m not sure what benefit there is diagnosing celebrities from afar when you do not have their medical records or histories in front of you. And yet, audaciously, Dr. Berman’s headline screams, “Steve Jobs Did Not Have ‘Pancreatic Cancer.” Unless Dr. Berman was his physician, she could not make such an outrageous claim.

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Comments

15 Responses to “Steve Jobs’ Cancer Denial”

  1. Pinky says:

    ‘Heal with steel’ also brings about its own range of complications, and how many people would willingly sign on to accepting them.

    There are worse things than death. Living with cancer is probably one of them. Having had a family member with a neroendocrine tumor, it’s hard to jump off the surgery train after it gets started.

    Did Steve’s decision hasten his death? Maybe, but in his own words, he accepted death and might have had second thoughts about the surgery, but appeared to accept his fate and apparently felt that he had led a good, rich, and full life.

  2. Thanks for posting this, John. A couple of people have said to me that “Jobs was an e-patient and it cost him his life.” I’ve not known what to say in response, because I’ve not had time to dig into his case. This helps.

    I suppose it’s worth discussing here – clearly Jobs took it on himself to choose his options, which is patient engagement.

    I wonder what others think. Personally, I’d say being an engaged patient simply means you’re engaged in your care. It doesn’t guarantee survival, correct diagnosis, optimal treatment or anything – anymore than those are guaranteed by being a passive dishrag patient.

    Thoughts, anyone?

    • If Jobs was an e-patient (and I honestly don’t know if he was or wasn’t — haven’t read the biography yet), this is a cautionary tale about the limits of our knowledge when it comes to holistic treatments for cancer.

      Certainly Steve Croft suggested his choices hastened his death. But I’m not sure anyone could say with any degree of certainty that had Jobs gotten treatment immediately, he’d still be alive today. Cancer doesn’t always that way.

  3. Eve Harris says:

    Magical thinking and cancer don’t mix

    1) Re: what did Steve Jobs do to himself, I strongly recommend @respectfulinsolence’s blogpost on Oct 21 at Scienceblog (URL below). I find it pretty definitive.

    2) As for Dr Berman, I don’t find her headline offensive at all. Mr Jobs’ diagnosis is-not- now-never-was in dispute. Islet cell NED. Not pancreatic adenocarcinoma. BIG difference, clinically.

    3) Was Jobs an epatient? Yes, it seems he was. Are all outcomes always going to be good for epatients? No, of course not. Exactly why did he die when he was so intelligent and privileged?
    That part I think you got right, Dr Grohol. Magical thinking and cancer don’t mix.

    Did Steve Jobs’ Flirtation With Alternative Medicine Kill Him? (update)

  4. Taylor Walsh says:

    To understand Jobs’ choices in regard to his cancer it helps to read Isaacson’s biography and to contemplate the personality that rolls out within it. It is not accurate to say that Jobs denied his cancer. He chose to deal with it in his own way, just as he did everything in his own way, even against the advice of people he highly respected like Andy Grove and Dean Ornish, who told him early on to “get the surgery.”

    He was also not an ePatient in the sense that that role involves sharing. He was not a sharer of anything, except his own vision which was wrapped in contrariness and tenacity and control-freak presentation. He eventually took on a Dave deB role for himself, researching deeply into gene therapy and DNA, none of which was ready to address a condition like his.

    Charlie Rose tried several times to get Isaacson to name someone who was responsible for giving Jobs bad advice. Isaacson would not bite, having been immersed in Jobs unique personality and beliefs for a long time. He knew that Jobs’ vegan lifestyle and use of non-conventional therapies was life long and nothing like a “flirtation.”

    I recently wrote the following about an excerpt from the book:

    “When the surgery was done 9 months after diagnosis, it involved removal of part of the pancreas, which, according to Isaacson’s text, meant his pancreas would would produce less protein: ‘Patients are advised to make sure that they eat frequent meals and maintain a nutritious diet, with a wide variety of meat and fish proteins as well as full-fat milk products. Jobs had never done this, and he never would.'”

    Always hard to know what the treatment is for “hardheaded iconoclast.”

    • Hi, Taylor – nice to meet you.

      This is such a broadly complex subject that I’ve hesitated to say much. For instance, “bad advice” is a pretty subjective thing to say, given the uncertainty we discussed here a couple of weeks ago.

      And as much as I rue his loss, I keep coming back to the question, whose life was it, anyway?? If he studied to his heart’s content, and chose with his eyes wide open, and neither complained nor blamed anyone, what is the problem? Is some part of society suddenly trying to judge how this potent individualist should have lived this part of his life, when he made his own rules throughout the rest of his life?

      • Taylor Walsh says:

        Hi Dave,

        My referral to “bad advice” just reflects the media’s instinct (even Charlie’s) to assign blame when something goes awry. To answer your questions: it is clear that Jobs made choices with his eyes very wide open. And regrettably, because some of the therapies and diet he used throughout his life still fall under the rubric “alternative medicine,” there are indeed those who protest strongly that such options are even available. (They’re also not happy that the NIH has spent $2 billion+ since 1992 researching them.)

        And I agree completely that Jobs’ health story is a prime example of uncertainty. And let’s toss in its very near relation: complexity. If MDs don’t embrace uncertainty (the topic of the discussion you pointed to), and if patients continue to embrace non-standard health options, as millions of them do, we’ll have the sight of MDs staying in place and patients going in a different direction.

        (BTW – we met at a crowded Health 2.0 meetup in a DC saloon early last year!) – Taylor

  5. HealthReporter says:

    Early treatment in no way guarantees a cure for any type of pancreatic cancer.

    What no one knows is how long that tumor had been there prior to being diagnosed (could have been years)and what it would have done without being disturbed by a biopsy. We also don’t know that Jobs would have survived had he followed doctors orders and had immediate surgery.

    By waiting 9 months for surgery, Jobs had 9 months of I’m guessing a pretty decent quality of life. Those 9 months are important. So often a seemingly healthy patient enters treatment, then spends the rest of their lives miserable, because of what the treatment did to their body. The moment you decide to embark on treatment, is the moment you must accept your life could be forever changed once you wake up. Yes the outcome could be great– but absolutely no guarantee.

    So many cancer patients do follow doctors orders only to die anyway and with a great deal of suffering as a result of their treatment.

    Until doctors can predict the outcome of every cancer, and accurately predict whether or not treatment will work, for how long and with what side effects, I don’t think we should discount Jobs’ choice to postpone treatment by calling it “magical thinking.”

    • Barry Brown says:

      I am a 7yr neuroendocrine cancer survivor. This rare cancer even when found in it’s late stages, in my case with only a few months to live, when aggressively treated medically i.e. surgery, chemo or hormonal interventions can give a patient with this disease a very acceptable out come or at least a shot at that improved quality of life. Chanting and ringing bells over a persons head with this disease is just nuts.

    • Jeff says:

      Anyone that has actually experienced the tragedy of cancer therapy and the acceptance you refer to knows that you are right! This complete lack of resolution, i.e. “trusted therapy” or actual admission of complete incapability to diagnose or treat, is complete embarrassing and boarders or is a result of 40-50 yrs of professional neglect and incompetence. Ask almost any non-oncologist medical professional candidly and you will find contempt for this profession.

  6. jb says:

    “I’m not sure what benefit there is diagnosing celebrities from afar when you do not have their medical records or histories in front of you.”

    You really should have left it at this.

    You don’t know what Steve Jobs felt, believed, or understood, and you don’t know the details of his medical diagnosis. Yet you presume to diagnose him, mentally and physically, from afar. (And just for fun, toss in a bonus dig about not being a technologist. Hey, he’s dead. Why not?)

    I’m afraid this is far more about the egos of the people pronouncing remote judgement on a famous dead man than it is a discussion of the realities of cancer treatment.

  7. A very good article. I feel sad that Steve Jobs died at a relatively young age. We may keep arguing that the medical approach that he took was wrong, he should have opted for conventional treatment instead of Alternative Medicine and so on. At the end of the day the real issue is what Dr. John said, he assumed that his mind power can beat the disease. Though there are several medical miracles, the very definition of miracle is something that happens very rarely and to assume that would happen to him is just being ridiculous.

    However, if given an option of dying at his age after accomplishing all the great deeds that he did, many would opt for it.

    Thanks

  8. […] Cancer denial – the story of Steve Jobs   […]

  9. I understand pancreatic cancer has a 96% mortality rate whether treatment is undertaken or not. And I would imagine Steve would have been told or otherwise known that, pretty early in the piece.
    No doubts he also knew that treatment would have been extremely debilitating and would most probably, up until the end stage, have more effectively prevented him from carrying out his future plans, than the actual disease itself.
    I am facing a similar situation with prostate cancer and that is why I have visited this site.
    Hopefully I will have enough courage to manage my disease without treatment, as the whole scenario of being an increasingly unwell and constant returnee public patient in a hospital system whose treatment centre is 90 kilometres from home seems at this stage, more daunting.

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