Pancreatic Cancer:   My Mother's Death
Research Funding Urgently Needed

By Martin Kimel

One in 75 men and women born today will be diagnosed with pancreatic cancer during their lifetime, according to the National Cancer Institute (NCI), the nation’s main agency for cancer research. As things stand now, the disease will kill virtually all of them, quickly. This year, an estimated 37,680 Americans will be diagnosed with pancreatic cancer and it will take the lives of an estimated 34,290 people. Yet while pancreatic cancer is the fourth-leading cause of cancer death in the U.S. and one of the most lethal of all cancers, it is also one of the most under-funded by the federal government.

Here are a few names and faces to put to the statistics: Luciano Pavarotti, journalist Dith Pran, Carnegie Mellon professor Randy Pausch, actor Patrick Swayze – and my mother, Eva Kimel. Pavarotti died last year. Dith, who survived the killing fields of Cambodia, succumbed this year, as did my mother. The 47-year-old Pausch, whose inspiring “last lecture” made him famous, died this year also, leaving behind a wife and three very young children. And the statistical outlook for the 55-year-old Swayze is grim because half of all pancreatic cancer victims die within six months of diagnosis, three-quarters are dead within a year and only 4% survive five years.

Cancer isn’t one disease; it’s many diseases. Significant federal funding increases for research on breast, colorectal and prostate cancer have led to significant decreases in mortality rates in those diseases. Meanwhile, a 2001 NCI-published report found that “severely limited funding” for pancreatic cancer has “limited the size of the research community pursuing progress against any aspect of the disease.” As a result, survival rates for pancreatic cancer have hardly improved over the past 30 years. Indeed, of the top five cancer killers, pancreatic is the only one whose mortality numbers have consistently increased in recent years.

In 2007, the NCI spent $73.3 million on pancreatic cancer research. By comparison, it spent $572.4 million for breast cancer research, $258.4 million for colorectal cancer and $296.1 million for prostate cancer. Each of these cancers can be detected early through routine screening tests, but no such test exists for cancer of the pancreas. Comparing research dollars to death rates, the NCI spent $13,991 per breast cancer death, $4,887 per colorectal cancer death, and $10,946 per prostate cancer death. For pancreatic cancer, it spent a mere $2,196 per death.

A diagnosis of pancreatic cancer remains a death sentence. When Pausch and his wife received his diagnosis, his wife noted that hepatitis, the disease they had initially suspected, would have been preferable to pancreatic cancer.

“Honey,” he told her, “I’d trade for AIDS.”

I remember the dread I felt on hearing my mother’s diagnosis. Surgeons later confirmed that her tumor was inoperable, as is typically the case. Nor was my mother’s first appointment with a top pancreatic-cancer oncologist at Memorial Sloan Kettering at all comforting. “We can’t cure you,” the oncologist told my mother bluntly. “Our goal is to keep you as well as we can for as long as we can.”

Note the total absence of any assurances whatever: as well as we can for as long as we can.

My mother exercised regularly, never smoked and, until her illness, had more energy than most people decades younger. As a young girl, she survived the Holocaust by hiding with her mother and sister for two years in the Polish forests. My mother was as strong-willed as they come, and she managed to beat the odds – for a while. But after about nine months of chemo, her physical deterioration accelerated and she wasted away before our eyes, growing ever weaker.

With great determination, she and my father continued to live their lives as best as they could, going out to play bridge, to the movies and to see friends, long after many others would have shuttered themselves at home. During this period, my mother was also going to the hospital every one to two weeks to have over a gallon of accumulated fluid drained from her gut.

After my mother’s bi-monthly CT scan showed an ominous “change to the liver,” my mom was put on a new, harsher chemo to combat the metastasis. But she couldn’t tolerate the new treatment.

As a child, my mother had escaped being sent to Auschwitz, but now, ironically, she looked like a concentration camp survivor. Because my mom had become a walking skeleton, I was amazed that her body could keep going. Until it couldn’t. Dehydrated and weak, she began falling, leading to a touch-and-go, three-week hospital stay. Soon after that she was confined to a wheelchair.
“This is a fight I can’t win,” she told my father.

Pancreatic cancer is cruel. It robs patients and their families of all hope while physically destroying its victims and crushing any quality of life. And it can be very painful. Immensely brave, my mother told me at one point that she just didn’t want to suffer at the end, tears rolling down her hollowed-out cheeks. I didn’t know what to say.

In that one respect, at least, my mother ended up being relatively “lucky.” While she had tremendous discomfort throughout her illness and, at the end, would cry out if you lifted her the wrong way off her hospice bed, she generally had little acute pain. Though weakened to the point of being unable to speak, she died peacefully at home, about 18 months after her diagnosis.

In a tragic irony, pancreatic cancer is so under-funded because there are so few survivors to march on Washington. Progress is being made to understand it, detect it earlier and treat it, but as the Pancreatic Cancer Action Network (PanCAN) says, the progress is “fatally slow.” The NCI needs to make combating pancreatic cancer a true priority, and Congress needs to make sure that the NCI gets the funding it requires.

The good news is that we don’t have to rob Peter to pay Paul: adequately funding pancreatic cancer research doesn’t mean we need to take money away from breast-cancer victims – and we shouldn’t. The money the cancer community wants is negligible in terms of the president’s proposed FY09 budget of $3.1 trillion. After consulting with leading researchers in the field, PanCAN is calling for an additional $170 million annually for the NCI to launch and maintain a pancreatic-cancer research initiative. That’s less than half of what we spend each day in Iraq.

The bad news is that at a time when breakthroughs in fields like genomics hold great promise to advance the war on cancer, the NCI’s budget hasn’t even kept pace with inflation, forcing cutbacks. According to one outside NCI grant-reviewer, the success rate for funding of federal grant applications for cancer research has fallen dramatically, putting a whole generation of scientific researchers at risk. In order to repair some of that damage as well as initiate new programs and expand existing ones, the NCI’s “professional judgment budget request” seeks an additional 25.5%, or $1.2 billion (which translates to under 0.04% of the FY09 $3.1 trillion budget).

A 9.5% increase to the NCI’s 2008 budget would allow the agency to continue its current programs next year. Sadly, though, the president’s FY09 budget doesn’t come close to even that modest figure. It gives the NCI only a 0.1% increase, guaranteeing further cuts in cancer research. This will condemn still more Americans to terrible suffering and premature deaths. Prayers for Ted Kennedy and other cancer victims are all well and good, but Congress and President Bush need to fund the NCI adequately.

Towards the end of her losing battle with pancreatic cancer, my mother said that no one should have to go through what she had to endure. For just an additional $170 million a year – less than 0.006% of the federal budget – we can start offering hope to pancreatic cancer patients and their families, and to the rest of us, who stand a 1-in-75 lifetime chance of being stricken by this horrible killer.