The news about Steve Jobs' decision to take a medical leave from Apple until June has been more than a bit disturbing to me—and not because I am among the legions of iPhone devotees. I, like Jobs, was diagnosed with an islet-cell tumor in my pancreas. The experience taught me a lot about this misunderstood cancer—and it has made reading media reports speculating about Jobs' mysterious medical condition, and what possible ramifications his brush with cancer have for his present health, incredibly frustrating.
The media aren't entirely to blame for the confusion. As Slate's Farhad Manjoo points out, Jobs hasn't made it easy to report on his medical battles. According to Fortune, he was diagnosed with an islet-cell tumor in 2003 but didn't publicly acknowledge it until he underwent surgery to remove it in the summer of 2004. Later, in responding to concerns about his visibly deteriorating health over the last couple of years, Jobs and Apple have been reticent, claiming at various points that he was fine, simply suffering from a "common bug," had "digestive difficulties" following his operation to remove his tumor, and had an easily treatable "hormonal imbalance" before admitting upon announcing his leave, without specifics, that the problem was more serious.
My diagnosis in 2007 was a matter of pure and simple luck. After I experienced nighttime abdominal pain, a gastroenterologist ordered up blood work and a CT scan. Over the next few days, the pain subsided, and I considered skipping the scan because I was feeling somewhat better. I was 37 years old. I ate lots of fruits and vegetables, exercised, and stayed away from trans fats. Still, I went for the scan, which revealed two things: I had appendicitis, which was responsible for my pain, and I had a tumor about the size of a "large tennis ball" in the tail of my pancreas. I had a nonfunctioning islet-cell tumor. I quickly learned that the only truly reliable way to treat islet-cell cancer is to cut the tumor out before it spreads. Fortunately, doctors at Johns Hopkins were able to do so. My surgeon, Dr. John Cameron, removed the tumor, cut out 40 percent of my pancreas (he resected the tail in a procedure called a distal pancreatectomy), removed my spleen, and took out my appendix for good measure.
While my tumor was large and had been growing inside me "for years" (my surgeon's words), it was caught before it had spread, and my prognosis is extremely positive. When a friend told me shortly after my diagnosis that Jobs and I shared a disease, I soaked up as much information about Jobs' condition as I could find. More recently, I've watched with a combination of wonderment and dismay as the news media, in their rush to report on Jobs' present condition, have often engaged in a journalistic shorthand—referring to his 2004 disease as "pancreatic cancer." While this description is technically true, it's also misleading. Islet-cell tumors can certainly kill people, but they're drastically different from adenocarcinoma, what we normally think of as pancreatic cancer, which is much more aggressive and common. Eighty percent to 90 percent of pancreatic tumors are adenocarcinomas. More than 37,000 Americans will probably be diagnosed with adenocarcinoma of the pancreas this year, while approximately 2,500 Americans annually are diagnosed with the much rarer islet-cell cancer. All of these crucial distinctions have often gotten lost amid the unseemly feeding frenzy around Steve Jobs.
Islet-cell cancer, like Jobs and I had, is usually curable when caught early; adenocarcinoma, which is usually detected only after it has spread, has a five-year survival rate of 5 percent. (Patrick Swayze has adenocarcinoma, as did Randy Pausch, whose "Last Lecture," recorded before his death, became a viral video sensation.) Another important point to keep in mind, also overlooked by most in the media, is that islet-cell tumors (also known as "neuroendocrine" tumors) are divided into functioning and nonfunctioning categories. While we don't know what kind of a tumor Jobs had—he has never specified—I can tell you that my tumor was "nonfunctioning" because as far as my doctors could tell, it wasn't producing any hormones, and it caused no symptoms.
In contrast to my own tumor, there are five types of "functional" islet-cell tumors. They "present" in a variety of ways, depending on what kind of hormones they produce: insulinomas, which can cause low blood sugar; gastrinomas, which release large amounts of gastrin, a hormone, into the bloodstream and cause ulcers in the stomach and duodendum; VIPomas, which tend to cause severe diarrhea; glucagonomas, which cause severe skin rashes and weight loss, among other symptoms; and somatostatinomas, extremely rare (fewer than one in 40 million people get them) islet-cell tumors with "nonspecific" clinical symptoms including diabetes and stones in the gallbladder. We have no way of knowing what was causing Jobs' "hormone imbalance," but functioning islet-cell tumors do all produce hormones, so this is one plausible explanation.