by Daniel J. DeNoon
Steve Jobs’ death from a rare form of pancreatic cancer raises a number of questions. I’m putting the answers to some common questions below.
Please offer any other questions you have, and I’ll get answers from medical experts.
Why Did Steve Jobs Live Longer than Other Patients with Pancreatic Cancer?
If Jobs had suffered the most common form of pancreatic cancer, adenocarcinoma, the chances are he would have died soon after his 2003 diagnosis. But as Jobs later revealed, he had an unusual form of pancreatic cancer known as a neuroendocrine tumor or islet cell carcinoma.
In 2004, nine months after his diagnosis, Jobs underwent surgery to remove the tumor. In 2009 he underwent a liver transplant, a procedure appropriate for only a small number of patients with this uncommon form of pancreatic cancer.
What Is a Neuroendocrine Tumor/Islet Cell Carcinoma?
When doctors discover that a patient has pancreatic cancer, the outlook usually is grim. But once in a while — about 200 to 1,000 times a year in the U.S. — it turns out to be an islet cell carcinoma.
Islet cells are the hormone-producing cells of the pancreas. It’s no walk in the park to be diagnosed with cancer of these cells. But these cancers include “a highly treatable and often curable collection of tumors,” according to the National Cancer Institute.
The course of disease depends on which of these cells become cancerous. Sometimes, as the tumor cells grow in number, they emit various hormones. This can have weird results, such as the inability to digest fats or sudden growth of the hands or feet. These hormone-emitting tumors often are benign.
Sometimes islet cell tumors don’t make hormones. This avoids those bizarre effects. But 90% of these tumors are malignant, meaning that they eventually are fatal if left untreated.
Can Neuroendocrine Tumor/Islet Cell Carcinoma Be Cured?
The first choice of treatment for islet cell carcinoma is surgery, says David Levi, MD, professor of clinical surgery at the University of Miami Miller School of Medicine. Levi did not treat Jobs or have access to his medical records. His comments are about islet cell carcinoma in general and not specifically about Jobs’ case.
“If it can be cured with surgery we try for that,” Levi says. “If not there are options: chemotherapy, and a number of other options to try to control this tumor. Some of these cancers are not curable, but patients can do well for years and years. … Many can be treated medically for months and years and do quite well and lead normal lives to the last.”
Jobs is said to have undergone the Whipple procedure. This is the preferred type of surgery when an islet cell tumor is on the head of the pancreas. It means that the head of the pancreas is removed, as is part of the bile duct, the gallbladder, and the first part of the small intestine. Sometimes part of the stomach is removed as well. Then the remaining parts of these organs are connected back to the small intestine.
Did Delaying Surgery Hurt Jobs’ Chances of Surviving Pancreatic Cancer?
Once it was clear that Jobs had the rare islet-cell pancreatic cancer, there was an excellent chance of a cure. According to Cleveland Clinic gastroenterologist Maged Rizk, MD, there’s an overall 80% to 90% chance of 5-year survival. In the world of cancer survival, that’s a huge milestone.
“I don’t think waiting nine months for surgery was a bad decision,” Rizk tells WebMD. “Especially if it is limited disease, especially if it is an islet-cell tumor and the cells are [typical of early cancer], and as long as you don’t have symptoms, you can sit on it a bit.”
So why wasn’t Jobs cured? “He was unlucky,” Rizk says.
Why Did Steve Jobs Have a Liver Transplant?
Although it’s now known that Jobs received a liver transplant in Tennessee, it’s not clear why. However, Levi says that a small number of patients with islet cell carcinoma may undergo liver transplant if their cancer has spread to the liver but does not appear to have spread elsewhere.
“A very small subset of patients with metastatic neuroendocrine tumors can be treated with liver transplant — and this can be curative,” Levi says.
It’s not a procedure for people who may have cancer remaining in their bodies. That’s because transplant patients must stay on immune-suppressing anti-rejection drugs for the rest of their lives. Without a functioning immune system, remaining cancer cells grow uncontrollably.
“The cancer can recur after liver transplant. When it does recur, it carries a pretty poor prognosis and ultimately is the cause of death,” Levi says.” We are limited in what we can do. The patient is immune suppressed. This usually means the cancer is aggressive, and once it recurs it usually is not curable.”
Did Steve Jobs’ Have Access to Treatment Most People Can’t Get?
Most U.S. patients with access to standard health care would be treated pretty much the same way as Jobs was, Rizk says. While he underwent surgery at a top hospital from a top doctor, many excellent hospitals and surgeons have similar success rates.
It’s likely that Jobs’ liver transplant was due to cancer spreading to his liver. Transplant is an unusual option, but not unheard of if doctors think the cancer spread is limited to the liver.
“Liver transplant is uncommon, but it has been done in average folk,” Rizk says. “There are different regions in the U.S. for transplant waiting lists, and a person can be listed at multiple regions. So people with enough money can go to different regions and get on that list. But in terms of when you get the organ, that is very rigorous and there is no manipulation of that. Money helps only so far as being evaluated at multiple sites, which any of us would do if we could.”
How Do You Know If You Have Pancreatic Cancer?
One reason why pancreatic cancer tends to be so deadly is that it usually isn’t detected until it starts to spread and cause symptoms. This usually happens when a person finally sees a doctor after weeks or months of symptoms such as abdominal pain, weight loss, or jaundice (yellowing skin and eyes).
“The problem with detection is that since [pancreatic cancer] is so rare, there is no good blood test or [routine] scan that can be done,” Daniel M. Lebow, MD, surgical oncologist at New York’s Mount Sinai Medical Center, tells WebMD.
When imaging studies suggest that a person has pancreatic cancer, doctors will perform a procedure known as endoscopic ultrasound. A tube called an endoscope is inserted through the mouth and down into the stomach or intestine.
“At the end of the endoscope there is an ultrasound probe that lets us see surrounding tissue: the gallbladder, the liver, and the pancreas,” Rizk says. “We get right up next to the lesion. So then we can go in with a small needle through the stomach or small bowel and obtain cells for biopsy.”
Examination of those cells tells whether it’s cancer, what kind of cancer it is, and whether it’s an early- or later-stage tumor.