Why did Steve Jobs choose not to effectively treat his cancer?
Just some new details re: this question. Again, so sad.
http://www.cbsnews.com/st
http://www.cbsnews.com/st
27 Answers
I hesitated a long time before addressing this topic, but now that someone asked me to, I'll just do it. To avoid any risks of bias, let me start by stating that all the details on Jobs' specific case are based on secondary sources, albeit from reliable sources in the media. I write this on a personal title, I do not pretend to know anything about the case on a personal level and I never participated in the care of Mr. Jobs. I base all my cancer figures on sources from biomedical research known to me.
I respect the privacy of, and in no way wish to offend, anyone mourning his passing. I have the profoundest respect for Mr. Jobs and his legacy but I feel that in the spirit of his progressive view of the world, learning from his case is an appropriate way to look back on the facts concerning his life and legacy.
I have done 1.5 years of research on the type of tumor that affected Steve Jobs as a medical student in Amsterdam and have some strong opinions on his case, not only as an admirer of his work, but also as a cancer researcher who has the impression that his disease course has been far from optimal.
Let me cut to the chase: Mr. Jobs allegedly chose to undergo all sorts of alternative treatment options before opting for conventional medicine.
This was, of course, a freedom he had all the rights to take, but given the circumstances it seems sound to assume that Mr. Jobs' choice for alternative medicine could have led to an unnecessarily early death.
Again, please understand that I have no knowledge of the specific case, I'm just trying to give insights on his a priori odds of cure. These are independent of his case and mere indicators that somehow his case turned for the worse when it statistically was improbable. What made this happen will remain in the domain of speculations. We're here to see if his therapeutic choices are possibly what made this happen.
First, let me clarify a few things about his disease:
Neuroendocrine tumors are far less deadly than "ordinary" pancreatic cancer.
The big confusion in the media is that Jobs had pancreatic cancer. Though his tumor might have originated in his pancreas, we're not speaking of the dreaded pancreatic adenocarcinoma that has such a horrible prognosis and makes up for 95% of pancreatic tumors.
Jobs is cited to have said himself that he had an islet-cell tumor, which is a colloquially used, less accurate name for the other 5% of pancreatic tumors, so-called neuroendocrine tumors.
Neuroendocrine tumors are relatively mild forms of cancer.
Gastroenteropancreatic Neuroendocrine Tumors (GEP-NET's) are a range of tumors that mostly keep their original function, producing endocrine hormones.
The disadvantage of that is the havoc they wreak on the body due to all sorts of hormonal imbalances caused by the hormones they produce. On the other hand, the level of differentiation is a strong indicator of how aggressive a tumor is: the better a tumor is differentiated e.g. keeps the features of its originator, the least invasive and prone to metastasis it is.
Just to illustrate how mild these tumors can be:
Neuroendocrine tumors caught in time can be treated just by surgically removing the tumor.
This is a relatively low-risk treatment that -- especially compared to chemo and radiation -- has negligible disadvantages. In many cases, a simple enucleation (just cutting out the tumor with a safe margin around it) is enough and leaves no residual side-effects.
Now, about this specific case:
Jobs had many favorable factors that indicate an early surgical treatment could have been curative.
See table below for a comprehensive illustration of the numbers I'm referring to, I chose an article from The Annals of Oncology as a source as it's one of the few papers freely accessible for everyone interested to read the full article: http://annonc.oxfordjourn
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... but not treating the most innocent cancer can still cause it to go seriously bad.
I'm currently reviewing hundreds of colon cancer cases, and about 25% of them start with a patient that comes with a history of polyps. Polyps are small benign little growths in the lining of the intestine. They are absolutely harmless at first, yet slowly but surely, over years, they lose more and more of the above mentioned "differentiation" and some eventually turn to a malign colon cancer.
In fact, it is supposed that all colon cancers start as a polyp.
These 25% had polyps removed, but were unlucky enough that between two colonoscopies, some other polyp found the time to grow into a real cancer. That's also why screening -- and going there on time -- is so important.
This illustrates also why leaving even the most innocent malign tumor to grow is just a foolish thing to do -- a ticking time bomb.
Jobs was a hippie back in the day, and a conventional medicine skeptic now. His reaction to the disease gave the disease time to spread.
Many mainstream media, including CNN, stated that Mr. Jobs might have spent as long as two years without proper (conventional) treatment.
While Mr. Jobs was trying all sorts of alternative mumbo-jumbo I won't even bother to go through as their failure is now sadly irrefutably proven, his tumor grew, and grew, and grew...
… and then it somehow grew beyond control.
Yet it seems that even during this recurrent phase, Mr. Jobs opted to dedicate his time to Apple as the disease progressed, instead of opting for chemotherapy or any other conventional treatment.
As for the "why?" question:
Every patient has another view of his or her disease and the priorities for the treatment, or how much suffering and risk they're ready to endure as a trade-off for a higher chance of getting cured.
For most people, the trust in their doctor's intention to treat them is near-absolute. We encourage patients to inform themselves on the subject and stimulate personal choices, but the extent to which people can go through all the technicalities and the enormous pile of medical evidence is limited not only by the level of understanding of this specialist knowledge, but also simply by the sheer time it takes to inform oneself about this.
Now Mr. Jobs always was a free thinker, a strong believer in spirituality, a vegetarian and a known skeptic of conventional medicine. He chose to reject conventional medicine altogether for a while. He's not alone in that. We come across many people like this and we all know someone in our midst that uses homeopathy or has this known fear of anything "chemical" (to those I always say that everything is chemical, if you think dihydrogen oxide sounds scary you should stop drinking water). Individual freedom of thought and choice is a cornerstone of our modern society and the medical world makes no exception.
It's always an ethical puzzle if a patient chooses alternative treatment that we know from fact will not work. Yet, as long as the person is mentally sane, we cannot force them to choose a working treatment, even if it means their death. Sadly, even for one of the greatest personalities of the last 100 years, there will be no exception, and badly treated cancer is just as deadly for him as for anyone else...
I respect the privacy of, and in no way wish to offend, anyone mourning his passing. I have the profoundest respect for Mr. Jobs and his legacy but I feel that in the spirit of his progressive view of the world, learning from his case is an appropriate way to look back on the facts concerning his life and legacy.
I have done 1.5 years of research on the type of tumor that affected Steve Jobs as a medical student in Amsterdam and have some strong opinions on his case, not only as an admirer of his work, but also as a cancer researcher who has the impression that his disease course has been far from optimal.
Let me cut to the chase: Mr. Jobs allegedly chose to undergo all sorts of alternative treatment options before opting for conventional medicine.
This was, of course, a freedom he had all the rights to take, but given the circumstances it seems sound to assume that Mr. Jobs' choice for alternative medicine could have led to an unnecessarily early death.
Again, please understand that I have no knowledge of the specific case, I'm just trying to give insights on his a priori odds of cure. These are independent of his case and mere indicators that somehow his case turned for the worse when it statistically was improbable. What made this happen will remain in the domain of speculations. We're here to see if his therapeutic choices are possibly what made this happen.
First, let me clarify a few things about his disease:
Neuroendocrine tumors are far less deadly than "ordinary" pancreatic cancer.
The big confusion in the media is that Jobs had pancreatic cancer. Though his tumor might have originated in his pancreas, we're not speaking of the dreaded pancreatic adenocarcinoma that has such a horrible prognosis and makes up for 95% of pancreatic tumors.
Jobs is cited to have said himself that he had an islet-cell tumor, which is a colloquially used, less accurate name for the other 5% of pancreatic tumors, so-called neuroendocrine tumors.
Neuroendocrine tumors are relatively mild forms of cancer.
Gastroenteropancreatic Neuroendocrine Tumors (GEP-NET's) are a range of tumors that mostly keep their original function, producing endocrine hormones.
The disadvantage of that is the havoc they wreak on the body due to all sorts of hormonal imbalances caused by the hormones they produce. On the other hand, the level of differentiation is a strong indicator of how aggressive a tumor is: the better a tumor is differentiated e.g. keeps the features of its originator, the least invasive and prone to metastasis it is.
Just to illustrate how mild these tumors can be:
- As many as 10% of autopsied persons in the general population have been reported to have one of these without ever having had any symptoms during their life.
- Up to 30% of detected GEP-NETs are so well differentiated they're strictly not cancers. I have even come across an article where insulinomas, the most common type of GEP-NETs were benign in 90% of the cases.
- If treated appropriately and in time, most people won't die from the cancer itself. In my series of patients, for many subtypes, the survival rate was as high as 100% over a decade.
Neuroendocrine tumors caught in time can be treated just by surgically removing the tumor.
This is a relatively low-risk treatment that -- especially compared to chemo and radiation -- has negligible disadvantages. In many cases, a simple enucleation (just cutting out the tumor with a safe margin around it) is enough and leaves no residual side-effects.
Now, about this specific case:
Jobs had many favorable factors that indicate an early surgical treatment could have been curative.
- Mr. Jobs said himself that they caught the tumor early. Early in GEP-NETs means in many cases that surgically removing the primary tumor without additional removal of organs is a curative with a low chance or recurrence.
- The tumor was located at a relatively clement site, the pancreas.
- The tumor was allegedly an insulinoma, one of the best treatable subtypes of GEP-NETs.
- The tumor was probably well-differentiated. Mr. Jobs spoke of a hormonal imbalance, this points to a tumor that keeps its endocrine function, which is an general indicator of good differentiation. Well differentiated tumors are less prone to metastasize and grow rapidly.
See table below for a comprehensive illustration of the numbers I'm referring to, I chose an article from The Annals of Oncology as a source as it's one of the few papers freely accessible for everyone interested to read the full article: http://annonc.oxfordjourn
... but not treating the most innocent cancer can still cause it to go seriously bad.
I'm currently reviewing hundreds of colon cancer cases, and about 25% of them start with a patient that comes with a history of polyps. Polyps are small benign little growths in the lining of the intestine. They are absolutely harmless at first, yet slowly but surely, over years, they lose more and more of the above mentioned "differentiation" and some eventually turn to a malign colon cancer.
In fact, it is supposed that all colon cancers start as a polyp.
These 25% had polyps removed, but were unlucky enough that between two colonoscopies, some other polyp found the time to grow into a real cancer. That's also why screening -- and going there on time -- is so important.
This illustrates also why leaving even the most innocent malign tumor to grow is just a foolish thing to do -- a ticking time bomb.
Jobs was a hippie back in the day, and a conventional medicine skeptic now. His reaction to the disease gave the disease time to spread.
Many mainstream media, including CNN, stated that Mr. Jobs might have spent as long as two years without proper (conventional) treatment.
While Mr. Jobs was trying all sorts of alternative mumbo-jumbo I won't even bother to go through as their failure is now sadly irrefutably proven, his tumor grew, and grew, and grew...
… and then it somehow grew beyond control.
- Jobs waited so long before seeking normal treatment that he had to undergo a Whipple procedure, losing his pancreas and whole duodenum in 2004. This was the first alarming sign that his disease had progressed beyond a compact primary to at least a tumor so large his Pancreas and duodenum could not be saved.
- Jobs seemingly waited long enough for the disease revealed to have spread extensively to his liver. The only reason he'd have a transplant after a GEP-NET would be that the tumor invaded all major parts of the liver, which takes a considerable amount of time. Years, in most neuroendocrine tumors. It could be that this happened before his diagnosis, but the risk grows exponentially with time.
- We then saw the tumor slowly draining the life out him. It was a horrible thing to see him lose weight and slowly turn into a skin and bones form of himself.
Yet it seems that even during this recurrent phase, Mr. Jobs opted to dedicate his time to Apple as the disease progressed, instead of opting for chemotherapy or any other conventional treatment.
As for the "why?" question:
Every patient has another view of his or her disease and the priorities for the treatment, or how much suffering and risk they're ready to endure as a trade-off for a higher chance of getting cured.
For most people, the trust in their doctor's intention to treat them is near-absolute. We encourage patients to inform themselves on the subject and stimulate personal choices, but the extent to which people can go through all the technicalities and the enormous pile of medical evidence is limited not only by the level of understanding of this specialist knowledge, but also simply by the sheer time it takes to inform oneself about this.
Now Mr. Jobs always was a free thinker, a strong believer in spirituality, a vegetarian and a known skeptic of conventional medicine. He chose to reject conventional medicine altogether for a while. He's not alone in that. We come across many people like this and we all know someone in our midst that uses homeopathy or has this known fear of anything "chemical" (to those I always say that everything is chemical, if you think dihydrogen oxide sounds scary you should stop drinking water). Individual freedom of thought and choice is a cornerstone of our modern society and the medical world makes no exception.
It's always an ethical puzzle if a patient chooses alternative treatment that we know from fact will not work. Yet, as long as the person is mentally sane, we cannot force them to choose a working treatment, even if it means their death. Sadly, even for one of the greatest personalities of the last 100 years, there will be no exception, and badly treated cancer is just as deadly for him as for anyone else...
Walter Isaacson, Job's biographer, explains his choice not to have the initial treatment done on this week's 60 Minutes:
Video preview available at: http://www.cbsnews.com/vi
I've asked [Jobs why he didn't get an operation then] and he said, 'I didn't want my body to be opened...I didn't want to be violated in that way,'" Isaacson recalls. So he waited nine months, while his wife and others urged him to do it, before getting the operation, reveals Isaacson. Asked by Kroft how such an intelligent man could make such a seemingly stupid decision, Isaacson replies, "I think that he kind of felt that if you ignore something, if you don't want something to exist, you can have magical thinking...we talked about this a lot," he tells Kroft. "He wanted to talk about it, how he regretted it....I think he felt he should have been operated on sooner.
Video preview available at: http://www.cbsnews.com/vi
62.9k Views • Upvoted by Lucy Wiley, Journalist, artist, living with neuroendocrine cancer, which I find endlessly fascinating.
In any discussion of Steve Jobs' illness it's vital to be clear about one thing: He did not have pancreatic cancer. He "had what is called a neuroendocrine tumor, more specifically an insulinoma."
Not just my opinion, but that of University of Chicago Medical Center Transplant Center, J. Michael Millis, who was quoted in an article about Jobs in Scientific American.
That the tumor was located in his pancreas does not make it pancreatic cancer. Mr. Amri got at least that part correct. It is not an ad-hominem to note that Mr. Amri is not recognized as an expert in neuroendocrine tumors. He betrays his lack of expertise in the disease when he makes bold headed statements like "Neuroendocrine tumors are relatively mild forms of cancer" and "Neuroendocrine tumors caught in time can be treated just by surgically removing the tumor." Both are broad outdated generalities subscribed to by so many members of the medical establishment, that they, much more than Mr. Jobs' early misguided reliance on "alternative remedies," may have played the major role in a death that might otherwise have been forestalled for many more years.
While Jobs probably did not help himself by waiting nine months between diagnosis and surgery, it can often take years before neuroendocrine tumors are diagnosed even when symptoms of "active" tumors are present, (see the Journal of the National Cancer Institute 9/17 2008) so the ultimate effect of the delay in treatment on his survival is academic. The one thing that is absolutely clear about his case is that when his surgeons told him that they "got it all" in 2004, they were wrong. This monumentally bad advice is not unusual among those with neuroendocrine tumors. I know dozens of others who have been given the same erroneous post-surgical assessment.
What we are unlikely to know is whether the surgeons who operated on Mr. Jobs performed a simple test (called KI-67) on the tissue they removed. It would have told them -- and presumably Jobs -- how aggressive his tumor was. While Mr. Jobs was clear that no chemo or radiation was required after his first surgery, it is unclear what, if any, follow-up monitoring -- blood tests, scans -- Mr. Jobs was advised to undergo.
As someone who has been fighting a neuroendocrine tumor since 1999, I know that monitoring the progress of my disease has been crucial to combatting it and has helped me survive for over 12 years. In that light, Jobs' delay in treatment before he had surgery might not have had as great an impact on his health as what he was apparently advised to do and more importantly not to do by his doctors after he was operated on.
Not just my opinion, but that of University of Chicago Medical Center Transplant Center, J. Michael Millis, who was quoted in an article about Jobs in Scientific American.
That the tumor was located in his pancreas does not make it pancreatic cancer. Mr. Amri got at least that part correct. It is not an ad-hominem to note that Mr. Amri is not recognized as an expert in neuroendocrine tumors. He betrays his lack of expertise in the disease when he makes bold headed statements like "Neuroendocrine tumors are relatively mild forms of cancer" and "Neuroendocrine tumors caught in time can be treated just by surgically removing the tumor." Both are broad outdated generalities subscribed to by so many members of the medical establishment, that they, much more than Mr. Jobs' early misguided reliance on "alternative remedies," may have played the major role in a death that might otherwise have been forestalled for many more years.
While Jobs probably did not help himself by waiting nine months between diagnosis and surgery, it can often take years before neuroendocrine tumors are diagnosed even when symptoms of "active" tumors are present, (see the Journal of the National Cancer Institute 9/17 2008) so the ultimate effect of the delay in treatment on his survival is academic. The one thing that is absolutely clear about his case is that when his surgeons told him that they "got it all" in 2004, they were wrong. This monumentally bad advice is not unusual among those with neuroendocrine tumors. I know dozens of others who have been given the same erroneous post-surgical assessment.
What we are unlikely to know is whether the surgeons who operated on Mr. Jobs performed a simple test (called KI-67) on the tissue they removed. It would have told them -- and presumably Jobs -- how aggressive his tumor was. While Mr. Jobs was clear that no chemo or radiation was required after his first surgery, it is unclear what, if any, follow-up monitoring -- blood tests, scans -- Mr. Jobs was advised to undergo.
As someone who has been fighting a neuroendocrine tumor since 1999, I know that monitoring the progress of my disease has been crucial to combatting it and has helped me survive for over 12 years. In that light, Jobs' delay in treatment before he had surgery might not have had as great an impact on his health as what he was apparently advised to do and more importantly not to do by his doctors after he was operated on.
101.2k Views • Upvoted by Lucy Wiley, Journalist, artist, living with neuroendocrine cancer, which I find endlessly fascinating.
I am a Professor of Medicine and Associate Chief of Medical Oncology at a major medical center with extensive experience in this arena. From my understanding of the literature, my personal experience with this kind of tumor, and my understanding of Mr. Jobs condition from reading between the lines of what has been reported, this is what likely happened:
Mr. Jobs was diagnosed with a neuroendocrine tumor of the pancreas which, like a great majority of these tumors, likely had micrometastatic spread at diagnosis. I agree that he likely had a resection of the tumor, whether through a Whipple procedure or another less radical procedure. Whether he had some liver involvement at diagnosis is unclear, but my bet is that he had some minimal liver abnormalities on CT of unclear significance, and they went ahead with the surgery given his age and his desires.
Neuroendocrine tumors of the pancreas do not respond all that well to cytotoxic chemotherapy. There are a few older papers in the literature on intrahepatic chemotherapy with anthracyclines, as well as papers on 5-FU and streptozocin systemic therapy. Most of the papers give median survivals for this disease of 6-8 years.
I suspect that Mr. Jobs liver metastases showed up within a few years of diagnosis and he did get systemic and likely intrahepatic chemotherapy. Some pictures released of Mr. Jobs sometime in the late 2000's show him with no hair.
The major complications of these types of tumors have to do with the hormones they secrete. That is why Mr. Jobs had his weight loss.
We also know that he had a liver transplant in 2009 at a hospital in Memphis. This was likely because the tumor burden in his liver and the systemic symptoms such (i.e. the weight loss) were such that a heroic effort of that nature was a reasonable option. It gave all of us two more years of Mr. Jobs.
The reason for his cancer progression and likely death was progressive tumor in either the abdomen (carcinomatous peritonitis with attendant bowel obstruction--the most likely scenario) or recolonization of his liver with metastases (less likely).
He outlived the median survival of his disease by a few years.
Whether he used alternative therapies or not had absolutely no effect on his survival or outcome -- that was dictated from day one by his tumor and its biology, and our current lack of effective therapies for this condition.
Mr. Jobs was diagnosed with a neuroendocrine tumor of the pancreas which, like a great majority of these tumors, likely had micrometastatic spread at diagnosis. I agree that he likely had a resection of the tumor, whether through a Whipple procedure or another less radical procedure. Whether he had some liver involvement at diagnosis is unclear, but my bet is that he had some minimal liver abnormalities on CT of unclear significance, and they went ahead with the surgery given his age and his desires.
Neuroendocrine tumors of the pancreas do not respond all that well to cytotoxic chemotherapy. There are a few older papers in the literature on intrahepatic chemotherapy with anthracyclines, as well as papers on 5-FU and streptozocin systemic therapy. Most of the papers give median survivals for this disease of 6-8 years.
I suspect that Mr. Jobs liver metastases showed up within a few years of diagnosis and he did get systemic and likely intrahepatic chemotherapy. Some pictures released of Mr. Jobs sometime in the late 2000's show him with no hair.
The major complications of these types of tumors have to do with the hormones they secrete. That is why Mr. Jobs had his weight loss.
We also know that he had a liver transplant in 2009 at a hospital in Memphis. This was likely because the tumor burden in his liver and the systemic symptoms such (i.e. the weight loss) were such that a heroic effort of that nature was a reasonable option. It gave all of us two more years of Mr. Jobs.
The reason for his cancer progression and likely death was progressive tumor in either the abdomen (carcinomatous peritonitis with attendant bowel obstruction--the most likely scenario) or recolonization of his liver with metastases (less likely).
He outlived the median survival of his disease by a few years.
Whether he used alternative therapies or not had absolutely no effect on his survival or outcome -- that was dictated from day one by his tumor and its biology, and our current lack of effective therapies for this condition.
There's a very good post on this. Titled: "Steve Jobs' cancer & Pushing The Limits of Science-based Medicine." Found it via @pkedrosky. http://www.sciencebasedme
