View Libby Znaimer
IT HIT VERY CLOSE to home for a celebrity death. That’s because of reports that the Queen of Soul, Aretha Franklin, died of pancreatic cancer, a disease I have been lucky enough to survive for a decade. It’s the deadliest form of cancer – the only one with a survival rate still in the single digits. At first, it seemed there was a silver lining to Aretha’s journey. Her illness first hit the headlines in December 2010. That meant she lived with her cancer for more than seven years while most people die within a year of diagnosis. But it turned out she had a malignant neuroendocrine pancreatic tumour. Same organ – but a very different disease.
There are many different forms of this neuroendocrine cancer, and lengthy survival is not unusual. “There isn’t really a predictable trajectory for this disease,” says Dr. Steven Gallinger, head of the hepatobiliary/pancreatic surgical oncology program at the University Health Network and a leading pancreatic cancer researcher. “It ranges from rapidly fatal to almost a chronic disease over 10, 20, 30 years.” It is also much more rare than pancreatic adenocarcinoma – what we call pancreatic cancer, which is increasing in frequency and on track to become the second largest cause of death from cancer by 2020.
Doctors are seeing more pancreatic cancer because the population is aging – getting older is a major risk factor – it means patients are not dying of something else first. And it is causing a larger proportion of fatalities because the death rates for other forms of cancer are fall- ing. “For the big cancer killers such as breast and colon, and even lung cancer, cure rates are improving,” says Gallinger.
The survival rate for pancreatic cancer is improving, too. It’s gone from five per cent when I was diagnosed in 2008 to nine per cent today. That’s nearly a doubling. But to put it in perspective, it means that out of 100 people who found they have the disease in 2018, only nine will be alive in five years. This is why the very mention of the words “pancreatic cancer” usually makes people gasp in horror. It’s probably why Aretha reacted to her news the way she did.
Although it was reported widely eight years ago, she vehemently denied that she had pancreatic cancer. Back then, I did not believe her. And to be honest, the denial angered me. When a celebrity is stricken with a disease, it creates a huge opportunity to create awareness and raise funds. It rankled that such a beloved figure chose not to. But the fact of her survival over this period of years made me rethink that judgment. I realized that she had been telling the truth and that I had been both mistaken and harsh. Pancreatic cancer, however, is seen as a death sentence, so it’s understandable why many people want to keep that news to themselves. “It was probably a wise decision,” says rocker and ZoomerRadio host Robbie Lane on why the silence. “She knew the business and she knew that once that was announced promoters would not be booking her.” In fact, Franklin had limited concert dates planned into the future.
That view of the disease is also a real problem when it comes to advocacy. “It’s one of the challenges we face that organizations like breast cancer groups were able to overcome as there were more survivors and more people willing to talk about it,” says Michelle Capobianco, executive director of Pancreatic Cancer Canada.
Gallinger sees nothing to crow about in the almost doubling of the survival rate in the last decade, which he refers to as a “slight improvement.” He believes it’s the result of safer surgery and better use of existing drugs. “I don’t think we’re going to get much higher unless there’s a major breakthrough, and that’s going to come through research,” he says. For the patients he sees, the journey is usually dra-
“It’s the only cancer with a survival rate still in the single digits”
matically different from Aretha Franklin’s. “It’s often compared to a car accident,” Capobianco says. “It happens so fast. From the time of diagnosis to death, it’s often a 12-week period. It’s devastating for those left behind. It’s important that we come together to stop this.”
For more information, go to pancreaticcancercanada.ca.