Everyone else wanted Steve Jobs to move quickly against his tumor. His friends wanted him to get an operation. His wife wanted him to get an operation. But the Apple CEO, so used to swimming against the tide of popular opinion, insisted on trying alternative therapies for nine crucial months. Before he died, Jobs resolved to let the world know he deeply regretted the critical decision, biographer Walter Isaacson has told 60 Minutes.
"We talked about this a lot," Isaacson told 60 Minutes of Jobs's decision to treat a neuroendocrine tumor in his pancreas with an alternative diet rather than medically recommended surgery. "He wanted to talk about it, how he regretted it....I think he felt he should have been operated on sooner... He said, 'I didn't want my body to be opened...I didn't want to be violated in that way.'"
The account lends credence to a Harvard cancer researcher we quoted in a controversial post last week.
Ramzi Amri, a Fullbright scholar researching neuroendocrine tumors at the Harvard Medical School and at Massachusetts General Hospital, said the tumors of the subtype Jobs is believed to have contracted are "relatively mild" and very survivable if detected early. But Jobs delayed surgery for at least nine months, making it "sound to assume that Mr. Jobs' choice for alternative medicine has eventually led to an unnecessarily early death."
He's regretful about it... Soon everybody is telling him, 'Don't try and treat it with these roots and vegetables and these kinds of things...' By the time they operate on him they notice it has spread to the tissues around the pancreas.
To understand Jobs's prognosis, it is necessary to appreciate the precise type of cancer he had, and the subtype he is believed to have had. First, Jobs's neuroendocrine tumor, also called an islet cell tumor, put him outside the 95 percent of pancreatic cancer victims who have highly fatal adenocarcinoma.
Second, Jobs is believed to have contracted one of the more survivable neuroendocrine tumors. It had several characteristics weighing the initial prognosis favorably, had Jobs acted as doctors recommended:
- It was apparently functional, meaning it produced hormones, hence the "hormone imbalance" that Apple eventually acknowledged. These sorts of tumors are more "differentiated" from other cells and are thus considered less progressed and easier to treat.
- Jobs's tumor did not initially appear to have metastasized, as there were no outward signs of chemotherapy, though after being left untreated it did become metastatic and spread to his liver.
- The tumor was in Jobs's pancreas, among the more survivable locations a neuroendocrine tumor can appear.
- Insulinoma, the type of tumor Jobs was most often reported and speculated to have had, is also among the more survivable types.
The five-year survival rates on this chart give a good indication of the prognosis for insulinoma (88.7 percent) and tumors located in the pancreas (78.1). It also shows how much more lethal metastasic and non-function tumors—of the type Jobs is believed NOT to have had, at diagnosis—can be.
If you want more details, we've included some notes Amri sent us by email below. But suffice it to say, Jobs's instinct for defiant iconoclasm and his insistence on unconventional approaches did not, in the end, serve him as well as it served Apple's customers and shareholders. And it seems clear Jobs knew this, and wanted the rest of us to know it, too.
Additional Medical Details
Here's how Amri explained things when we asked him on email about a particular type of neuroendocrine tumor with a lower survival rate ("non-functioning metastatic islet cell tumors," whose survival rate is only around five years):
That number could very well be true, but there are two reasons it doesn't apply to Jobs (and again, we're on the border of speculation but it's based on hard number and what Jobs said):
The metastatic part: Metastasis means the tumor spread outside its original site. His tumor probably wasn't metastatic until when Jobs spoke of that "hormonal imbalance", I believe in '08 (source is easy to google). That was also the reason for his liver transplant: his liver was probably invaded by metastatic disease. If he had mets before, he certainly didn't treat them as we'd have seen the obvious signs of chemotherapy appear.
The nonfunctional part, nonfunctional in those tumors means the cells degenerated to the point that they cannot carry out their original function, in this case, as I said in my first point, Jobs spoke about a "hormonal imbalance" when the disease recurred somewhere as late as '08/'09. This means the tumor was -even then- clearly still producing hormones, proving it was a functional one, which is far less deadly than the nonfunctional ones.
This so-called called loss of differentiation is actually a strong predictor of how bad the tumor is in many cancers. The less differentiated it is, the more reckless it will be in its growth pattern and its tendency to spread.
For instance, in my colon cancer patients, they're about 8 times as likely to develop or already have metastasis if their tumor is poorly differentiated as compared to well or even moderately differentiated tumor.
The subtype: so Jobs didn't have a nonfunctioning one, but from what I read (please google to double-check) he even had an insulinoma, which is actually the most common and best treatable type.
He also had it in the pancreas, which is known to have one of the best prognosis averages.
Combine the two in this table comparing the different kinds of neuroendocrine tumors, add up the extraordinary level of care a man like Jobs can access and afford and you can see what I mean about his considerable chance of cure, hope it helps.
Amri also fielded questions (in italics) about this Slate piece:
1. "Islet-cell cancer, like Jobs and I had, is usually curable when
caught early" - this seems to fit with what you wrote. Is "curable"
the right word, i.e. it's gone and you don't die from it?
1 - Absolutely. If you're on time, you can resect the tumor (depending on the site) without even needing to remove the pancreas or any other organ.
And since you're early, the chances of it coming back as a recurrence from the original tumor are small.
There could always be an independent recurrence, if you have a familial disease that makes you at risk of developing these nasties (google MEN-1 for the most common example) but there's no indication this was the case for Jobs and -one again- seen the level of care he can afford, I'm pretty sure that has been checked on him. It you do not have a familial disease, it's like lightning striking twice at the same place. It happens, but with these tumors, that's really, really unusual.
2. "After I was diagnosed, I was told that modern medicine doesn't
have chemotherapy or radiation to use against islet cells. ("We've got
nothing that works" went the refrain.) " I noticed in your piece you
mentioned Jobs seemed to eschew chemo; would he have had a choice?
2 - I think that was specific to his own case and his own subtype of islet-cell tumor.
In general, and especially if Jobs had a well-differentiated insulinoma, there are many treatment options, but when you're early and the tumor is small enough, surgery is by far the best, in most cases you take the tumor out locally, check the local lymph nodes and if there is no spread in the nodes, you can confidently release the patient without any lasting side-effects, a low risk of recurrence and only a checkup consisting of a scan an labs every year or so as long as symptoms don't come back.
- Chemo doesn't always work and works in only about 10-20% of cases if the tumor is in the intestines or the stomach, but if it's in the pancreas, some agents have been FDA approved and can help much more often.
Also, these numbers might appear worse than they really are because only the worst cases actually get chemo because most won't need it at all. If you treat only the bottom, the average success will of course be low.
- There's also radiotherapy with special isotopes that will be absorbed by the endocrine tumor cells that helps a lot if the tumor is metastatic.
- If that doesn't help there's the option of partial resection of the liver instead of removing the whole thing. The liver has the amazing faculty to partially regrow so a lot of the liver can be resected before the patient actually has a problem. This option is only available to those cases where the tumor is confined to either the right or left lobe, or in milder cases, only one of its eight so called Couinaud Segments.
All of that is usually tried before one refers to a liver transplant. If only because livers are very scarce organs and transplants to cancer patients are not always a good idea because of the immune-system suppressing drugs used to prevent rejection. They also partly suppress the body's own immune reaction to any cancer growths, making the cancer more prone to spread.
[Photo of Jobs via Getty Images]