Features  No money, no hope

With a six per cent, five-year survival rate, pancreatic cancer remains the deadliest of all.

On a bright day in August, I woke up to a terrifying sound coming from downstairs. It was a long drawn-out screech, as if a speeding semi-trailer had suddenly slammed its brakes outside of my bedroom. When I got out of bed to lean against my door, it became clear that the sound was my father vomiting in the kitchen sink. Most people vomit in short bursts; there is usually a pause after each discharge of puke. But my father’s vomit was a continuous stream of blood and regurgitated matter that lasted for five minutes, enough to fill the sink.

My father’s cancer had spread to his skin the week before, a burning black spot on his stomach, oozing with pus. Two months prior to that, he had developed his first symptom: an accumulation of fluid in his peritoneal cavity – a thin membrane in the abdomen. And a month before that, he was healthy enough to play tennis once a week. Presently, his peritoneal cavity is filled with hundreds of small tumours. His cheeks are hollow, and his hair is thinned out. He now weighs less than I do, and the cancer will continue to grow and spread until he weighs next to nothing.

The cancer originated in his pancreas. In a healthy human body, that seemingly innocuous organ produces digestive enzymes for the small intestine. But when cancer develops, the organ turns into a formidable killer. Pancreatic cancer has a five-year survival rate of only 6 per cent. In 2010, 43,000 people in the U.S. were diagnosed with the disease, and 37,000 died within the first year. As the oncologist Siddhartha Mukherjee writes in The Emperor of All Maladies, “even in oncology, a dismal discipline to begin with,” inoperable pancreatic cancer is considered the “epitome of the dismal.”

Cancer is the uncontrolled growth of a single cell. Cells normally die and divide at a normal pace, but with cancer, they are capable of multiplying endlessly. This growth can create masses of tissues or tumours, which can then spread to other parts of the body through a process called metastasis. But this is where the similarities between all forms of cancers end; each cancer is unique because each cell is unique. To paraphrase Dr. George Zogopoulos, a surgeon at the Royal Victoria Hospital who specializes in pancreatic cancer research, “We are not talking about a single illness, but a whole range of diseases.” Pancreatic cancer, with its sombre statistics, is thus vastly different than prostate cancer – an illness that has a five-year survival rate of 96 per cent.

Pancreatic cancer, with its sombre statistics, is thus vastly different than prostate cancer – an illness that has a five-year survival rate of 96 per cent.

When I met Dr. Zogopoulos, he made it clear that one of the biggest problems with pancreatic cancer research was patient activism. “Patients get this disease and most of the time, they succumb quickly […],” he said. “The families are devastated, and patients don’t have an opportunity to become an activist.” In other words, pancreatic cancer is a vicious circle in which patients die quickly because there is no funding to research treatment, and there is no funding because patients die too quickly to become activists.

Given the odds, some patients refuse treatment altogether. Of the few drugs available, many are ineffective. At most, they can extend the lives of patients by months, and the effects on the human body are devastating. The standard treatment, gemcitabine, commonly know as Gemzar, is marketed by Eli Lilly and Company, the same pharmaceutical corporation behind Cialis and Prozac. When injected, the drug is an irritant; it burns the vein. Worse, the drug leaves patients with perpetual, severe nausea, which can lead to periods of prolonged vomiting. For cancer patients, vomiting can be deadly; maintaining a decent weight is crucial for survival. Another treatment, Folfirinox, is far more toxic for the human body. Patients can increase their survival rates by a few additional months, but the side effects are severe: 5 per cent of patients experience neutropenia, a potentially deadly disorder that attacks white blood cells. With Folfirinox, the concept of chemotherapy – eliminating rapidly dividing cells – is taken to the extreme.

This idea of destroying cancerous cells through drug therapy was first conceived during World War II. In 1944, scientists discovered that soldiers who had been exposed to mustard gas became leukopenic, meaning their white blood cells were dying off. Since leukemia is the aberrant growth of white blood cells, researchers believed that a similar chemical could be used as a cure. Subsequent research led to the development of the first anticancer drug, mustine. The chemical, if airborne, could have easily burnt through human skin. Chemotherapy was thus derived from chemical warfare.

Since then, chemotherapy treatments have become more sophisticated. Tarceva, a drug manufactured by Roche, acts by cutting off the blood vessels that feed pancreatic or lung tumours. For pancreatic cancer, it extends the lives of patients by only twelve days on average, at a cost of $26,000. The financial dilemma of cancer drugs is hardly ever discussed, and it is sometimes difficult to understand why these chemotherapy treatments – Gemcitabine, Folfirinox, and Tarceva – even exist at all.

When I asked my father’s oncologist at the Montreal Jewish Hospital about Tarceva as an option, he shrugged. “I tried it with other patients,” he told me, “and it wasn’t very effective.” It is this sort of casual indifference from doctors and pharmaceutical companies that makes cancer – especially terminal cancer – even more unbearable. An additional twelve days might seem insignificant to most people, but not to pancreatic cancer patients. Their calendars have already been cut cruelly short.

Bodily mutilations and side effects are often discussed with detachment. At a support group in September, the husband of a woman with breast cancer told me that their oncologist had recommended a complete mastectomy, only to change his mind a few weeks later. Even our doctor seems indifferent. The extent of my father’s disease was never properly explained to him. It was only after a visit to another physician at a different hospital that he finally understood his cancer was inoperable.

Rose Kushner, a breast cancer survivor who sat on the National Cancer Advisory Board, warned about the callousness of physicians in an 1985 article in the New York Times: “When doctors say that the side effects are tolerable or acceptable, they are talking about life-threatening things like a drop in your white blood cells or vomiting to the point where you have to go to the hospital for intravenous nutrition. But if you just vomit so hard that you break the blood vessels in your eyes, […] they don’t even consider that mentionable. And they certainly don’t care if you’re bald.”

Nowhere is this sentiment more apparent than in the industry that surrounds clinical trials. There, pharmaceutical companies eager to produce ultra-expensive drugs treat terminal cancer patients like guinea pigs. On the website of the National Cancer Institute, patients from all over the world can easily browse through the latest trials. For pancreatic cancer, the options are few. Nevertheless, unproven drugs continue to be routinely tested on desperate people who are – for all intents and purposes – condemned to die. They expose patients to horrendous and potentially deadly side effects while promising only a few extra days or months.

Nevertheless, unproven drugs continue to be routinely tested on desperate people who are – for all intents and purposes – condemned to die.

It goes without saying that there will never be a cure for pancreatic cancer without clinical trials, but the research is so underfunded that every new drug produced only offers marginal benefits. According to Pancreatic Cancer Canada, “only a handful of scientists concentrate solely on this disease and this is due to the lack of funding earmarked for pancreatic cancer and as a result, the survival rate has remained unchanged for decades – still in the single digits.” Moreover, as Mukherjee writes in his book, a pancreatic cancer diagnosis in 500 BC would likely result in the same prognosis as one today. A diagnosis of leukemia or Hodgkin’s lymphoma, however, would produce a completely different prognosis: an increase in life expectancy of thirty or forty years.

Few people are aware that November is Pancreatic Cancer Awareness Month. “Movember,” a campaign to fund prostate cancer research, and Breast Cancer Awareness Month, often overshadow pancreatic cancer fundraising. For patients suffering from deadlier cancers – pancreatic or ovarian, for example, it can be difficult to understand why some of the most treatable forms of cancers enjoy this high level of publicity. Prostate and breast cancers are two of the most funded types of cancers, and each has a five-year survival rate of 96 and 88 per cent, respectively. Lung cancer is extremely deadly as well, but the stigma associated with smoking prevents it from amassing more funds.

Even more frustrating is the fact that the disease is all too often discussed in abstract terms, as if cancer exists in a vacuum. But the culprits are well known. In 1995, the historian Robert Proctor wrote in Cancer Wars: “the causes of cancer are largely known – and have been for quite some time. Cancer is caused by the chemicals in the air we breathe, the water we drink, and the food we eat.” It’s almost as if our whole way of life is killing us, going so far as to turn our own cells into poison. And while it is true that cancer is built “into our genome,” as Mukherjee points out, cancer is far more prevalent today than it ever was. One in three people will be diagnosed with cancer in the United States, and the cancer rate in children and adolescents has been rising by 1 to 1.5 per cent a year since the 1960s. This disease is not the result of a genetic lottery.

But despite the dismal statistics, the problems of underfunding, the callousness of the industry, and the constant agony of cancer, my father continues to fight. Cancer patients are, by a wide margin, the bravest people I have ever met. I remember the first time I went to a support group, a woman suffering from advanced lung cancer, confided to us that she had gone dancing the night after her bleak diagnosia. “I’m not ready to die at 50, and I know I can make it to 60,” she told us with a gleaming smile on her face.

At a chemotherapy treatment on the eighth floor of the Jewish Hospital, a woman who sat beside us told my mother – almost enthusiastically – that she was heading to a three-hour-long radiation after her treatment; the look of defiance in her eyes was enough to motivate all of us. Above all, even on the day of his diagnosis, my father promised my brother and me that he would, “fight the disease until the end.”

His diagnosis came in August with a prognosis of five to eight months. There is always a feeling, however, that my father will be part of the 6 per cent that survives the 5-year mark, or even part of the 1 to 3 per cent who vanquish the disease altogether. Three weeks ago, we learned that the tumours in his peritoneum had shrunk, and that his skin metastasis had also receded. Chemical warfare seems to be working, for now.

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