Steve Jobs: the precise diagnosis

Back in the office, after a brief time away, I find the massive biography of Steve Jobs by Walter Isaacson.

I am tempted to review it for the TLS myself.

But only briefly tempted.

What I know about the inner workings of the iPhone could be written on a silicon wafer - or on one of those tiny shards of 'rare earth' that children hunt in Congolese mines. I have an iPad but use it much less than once I had hoped.

I know only one relevant thing - a bit about the type of cancer that killed him. Ten years ago the same one had me in its coils too.

A pancreatic neuroendocrine tumour was the problem in both our cases. I know that this pancreatic  NET, the one that was once my cancer and his, is significantly different from what a cheerful consultant once described to me as 'bog-standard pancreatic cancer'.

It may seem an unimportant difference until you are playing host to one of them. But for the sufferer it is a vital distinction that  most articles about Steve Jobs's death have failed to make at all.

The NET is indeed a nasty beast but it is rare, sluggish and, with much skill (other people's) and even more luck (the patient's) it can be defeated. 

The 'bog-standard' kind of pancreatic cancer (the unpleasant adjectival construction was once briefly fashionable: something to do with Tony Blair and comprehensive schools)  is not so kind.   

After my NET and I had parted company in the year 2000,  I joined the NET Patient Foundation  a charity that aims to raise awareness of the condition. The more that doctors and patients recognise it, the more lives will be saved. That is our purpose.

Some small compensation for the loss of Jobs might have been some help, in making more patients and doctors recognise NET symptoms in one organ before their harm has moved, sluggishly and often fatally, to another.

But, as the NET Patient Foundation has quickly discovered, the millions of words about the Apple pioneer have not helped at all. In the media the distinction has been almost everywhere missed. There has been no 'Steve Jobs effect' in raising knowledge of the disease that killed him.

Most of the emphasis has instead been on his belief that he could cure his cancer by carrots and acupuncture, a course of inaction that might have been reasonable (though controversial)  towards a catastrophic 'bog-standard' pancreatic tumour but was irrational (to put it mildly) in his case.

Jobs's NET was detected early - which should, as Isaacson says, have helped him. He was 'lucky', luckier than most. Pages 452-454 are chilling in their discussion of how the stubborn will of the genius engineer becomes the obstinacy that was fatal to him.

But that is helpful only in understanding the character of Steve Jobs. A rather wider gain in understanding has been missed. 

 

Comments

[Clayton Burns]

[I have an iPad but use it much less than once I had hoped.]

It is hard to credit the popularity of the iPad, because it is a trinket.

The ASUS 1015PN Netbook is infinitely better as a writing platform, even if the MacBook Pro 13-inch would be light (neutrino?) years ahead for graphics and website production.

Sir Peter raises an interesting point about orientation to information.

That UK schools can't introduce honors courses in information management, beginning with "The Information" and taking as the ultimate focus: "Cognition" (5th Edition) Mark H. Ashcraft, Gabriel A. Radvansky, makes little sense.

Disorientation is as deeply embedded in the human psyche as the turn into cancer in our body.

One of the slickest tricks of human psychology is the persuasive message that we get that we are orienting: when we are sleeping.

[Sara]

A wider understanding of Steve Jobs's cancer is vital to save future lives. My life partner, best friend and father to my children died aged just 49 in July this year after being diagnosed with a NET 8 weeks before. He had been going to GP's with (what I know now) symptoms indicating this condition for FOUR YEARS. The NET Patient Foundation are doing fantastic work to create awareness but need funding. I hope they achieve this in order to diagnose this condition earlier so that like Peter, it can be treated sooner rather than, like in my partners case, very sadly way too late.

[David Wall]

Just written a blog post yesterday on the work we've recently competed for NET Cancer Day and following the work we did for NET Patient Foundation in the UK. My piece opens with the precise diagnosis of Steve Jobs' illness. Please Google "dusted net cancer day" to visit our site and read it.

[Fred Slezak]

Well written, Sir Peter. I too have walked in your shoes (and S. Jobs)and can speak of my pancreatic NET in past tense. Eight months of an experimental Chemo pill cocktail administered by Dr Manisha Shah at Ohio State University was successful in shriking the tumor to the size where it (and the entire pancreas) was removed in a Whipple proceedure. That was 14 months ago and today I'm healthy, and enjoying all the activities (and work) that I did prior to the surgery. Did you have a Whipple? It's curious to see in Jobs bio that once he did agree to the surgery (too late) they still left much of the pancreas behind. I'm a diabetic without my pancreas but I'll trade cancer for diabetes anytime.