Saturday, August 28, 2010

Steve Jobs: Silent Neuroendocrine Tumor Survivor

In 2010, Forbes Magazine estimated Apple's Chairman and CEO Steve Jobs's net worth at 5.5 billion dollars, and Fortune magazine named Jobs as the single most influential person in business. Despite his money and influence, however, Steve Jobs has failed miserably in one critical area: as a survivor advocate for neuroendocrine tumors.

Neuroendocrine tumors (NET) cause carcinoid cancer, and Jobs had one. Like most things Apple, news of Jobs's health has been kept tightly under wraps, despite swirling conjecture. The first confirmation of cancer came from Jobs himself in an August 2004 email to employees, which he wrote from his hospital bed after having an islet cell pancreatic neuroendocrine tumor removed. The email was upbeat and boldly claimed that the surgery had "cured" him of cancer. Then, he went silent.

Jobs's ongoing secrecy about his cancer and treatment has spurred some outrageously false media reports, including a mistakenly published obituary by Bloomberg financial newswire in 2008. But instead of using these media glitches as an opportunity for advocacy, Jobs has just laughed them off - even jokingly quoting Mark Twain:
"The reports of my death are greatly exaggerated".

So it was no surprise that Jobs made big news in March 2010 when he agreed to stand by Arnold Schwarzenegger's side at a press conference introducing new organ donor legislation. In front of reporters, Jobs publicly revealed that he had received a liver transplant in 2009, and spoke passionately about needing a "media campaign" to make an otherwise uniformed public aware of the need for organ donations. Again - Jobs said nothing about his rare underlying cancer, which is most likely the reason why he had to get a liver transplant in the first place.

Jobs's comments were akin to a parent at a GM press conference arguing for better breaks after losing a child in a drunk driving accident. While no one can argue against the importance of organ donations (or breaks), the root cause of the tragedy remains buried thereby squandering a unique opportunity to emotionally reach people on a life-saving issue.

I understand that Jobs is considered an indispensable asset to consumer confidence in Apple, which in turn affects stock prices; but as Charles de Gualle once said, "the graveyards of the world are filled with indispensable men." What if Jobs's legacy wasn't simply a cool phone and snazzy computer? What if he stopped looking for the hottest new gadget and started inspiring others to look for a cure for neuroendocrine tumors?

Charles de Gualle also said, "Faced with crisis, the man of character falls back on himself. He imposes his own stamp of action, takes responsibility for it, makes it his own." I hope that someday Jobs will make the fight against neuroendocrine tumors and carcinoid cancer his own, and use his iconic status to convince the world to join him.


  1. This is a really interesting post and I enjoyed reading it. I heard earlier this year that Jobs did have a transplant due to neuroendocrine cancer and often wondered why he wasn't more vocal or more of an advocate for awareness. I agree and hope that he one day will do more for this cause.

  2. Thanks Stephanie! I actually heard that Steve Jobs sometimes answers emails, so I sent him a copy of this blog entry along with the following email to: knows?

    Dear Mr. Jobs,

    I am providing you with a copy of a recent blog post that I wrote about your lack of advocacy for the neuroendocrine tumor and carcinoid cancer community. I started my blog "Channeling Jackie-O" when I myself was diagnosed at the age of 35 with carcinoid cancer. I am writing to you now because there is a tremendous opportunity to become involved in the first Worldwide NET Cancer Awareness Day on Nov. 10th - I hope that's one launch you won't miss.

    Marlena Johnston
    NET / Carcinoid Cancer Survivor

  3. Hello Marlena,

    I just stumbled across your blog while researching carcinoid tumors. I am a 34 year old mother of 8 and a part time photographer. In June, I went in for what seemed like gallbladder pain. A routine ultrasound was ordered, and while gallstones were found, a 2.2cm mass was also discovered on my common bile duct. It was a very scary summer for sure! After extensive testing, an endoscopic biopsy confirmed the doctor's suspicious that I had a carcinoid (neuroendocrine) tumor. I'm being treated at the Mayo Clinic in Scottsdale, AZ. This past Friday (the 27th), I just underwent an exploratory laparotomy. I was told that these tumors don't normally originate in the bile duct and they wanted to double check all of my other internal organs for evidence of any tumor activity. My octreotide scan was totally negative (did not even show the tumor we knew existed) and all of my blood and urine work was normal. During my surgery, my organs were checked both by the surgeon's hands and with internal ultrasound. They discovered during my surgery that my tumor did in fact originate in the bile duct, making a rare condition even rarer. Only a handful of cases like mine have been documented. I was given a partial whipple procedure which basically removed the affected area of my common bile duct and re-routed things through my intestines, and my gallbladder was removed. I am now at home trying to recover from this massive surgery, which has hit me harder than I expected. I am told that I can basically consider myself 'cured' and that the entire tumor was removed. The surrounding lymph nodes were removed and sent to pathology as well and all were negative. Anyways, it has been comforting to find your blog. I'll come back and read more thoroughly when I get a few minutes. I wish you good health and healing! I'd love it if you could get in touch with me! My email is

  4. Hi Lisa!

    What a terrifying ordeal. It's amazing how many carcinoid stories read like yours (and mine) - it's such a rare cancer that even some of the best doctors in the world don't know what to do when they finally find it. I'll definitely send you my email, and please let me know if I can help in any way.

  5. I have had similar thoughts about Steve Jobs not being a spokesperson for NETs. My first tumor, 2.5 cm, was removed in November 2008. Now I have several new tumors in my liver (even though they said the original tumor was benign). Celebrities get the attention and this cancer needs all the attention it can get.

  6. I had a total pancreatectomy to remove carcinoid tumors of the pancreas. While I currently have no tumors, it did get into adjacent lymph nodes. That gives me a good prognosis but I likely will see these return at some point.

    I too wonder about Steve's reticence to be more active in carcinoid awareness. Based on my experience, I suspect it might be because he reportedly had both an operation to remove pancreatic NETS tumours as well as a liver transplant. I was told had my tumours metastisised to my liver, surgery would not be possible. Somehow it was possible for Steve.

  7. Hi Lisa,

    I had a non functioning neuroendocrine islet cell tumor that was completely removed in 2003 leaving about 20% of the pancreas left. Two years ago an MRI showed liver metastases. I just want to make everybody aware of the need of yearly follow up, and MRI is the study of choice.
    All the best to everybody and I also wish Steve Jobs would be more involved.

  8. I was diagnosed with an atypical carcinoid in my lung 18 months ago. I was told the surgeon got it all and lymph nodes were clear but I still worry. Protocol calls for five year follow-up. Then what? Steve Jobs is just one example of people who have the cancer returning years later. I am scared and also wish Jobs would get this rare class of tumors on the radar screen. Be great to see some of his money used for research. As I am sure Jobs would want said -- I am posting this from my iphone. Come on Apple -- we buy your products. Help us.

  9. I was so sorry to read of Steve Jobs' leave of absence today. I lost my brother to a very rare neuroendocrine pancreatic cancer which eventually metastasized to his liver. He struggled with hypoglycemia for years while this undiagnosed and indolent tumor grew. After surgery he survived almost exactly four years but he suffered from many complications including increasingly difficult-to-control hypoglycemia. It was always so hard to find current information and so we followed the course of Steve Jobs' treatment with great interest, what little was available, and we always wished that it could have been more informative. Every patient deserves the right to privacy and I wish Jobs the best.

  10. It was very sad to hear of his leave today too. I agree that every patient deserves a right to privacy, but as someone who makes a living in the public eye, he has an opportunity that not every patient has - he has a voice that would be heard by millions, and he has chosen to remain silent on this rare and deadly disease. Even now, the reports are that he had pancreatic cancer which he beat. This is inaccurate even according to his own statements - he had a NET of the pancreas - completely different. Michael J Fox is just one example of a patient who certainly had a right to keep his condition private, but saw his stardom as an opportunity to fight his disease publicly in order to help raise awareness and find a cure. I just wish Jobs would show an ounce of this same courage.