Funding shortage and ignorance hurt pancreatic cancer fight
When Marilynn Lowenstein walked into shul on Rosh Hashanah two and half years ago, her friend, a doctor, took one look at her and sent her to the emergency room. Lowenstein’s skin and eyes were yellow — she was severely jaundiced.
By the time the congregation got to the “who shall live and who shall die” prayer, Lowenstein, now 62, had a probable diagnosis of pancreatic cancer.
The diagnosis didn’t surprise her. Lowenstein’s mother died of the disease at 45, and two of her mother’s uncles had also died from pancreatic cancer. But when she brought up the possibility at every annual physical, her doctors had nothing to offer — there were no early screening tests, and symptoms don’t usually manifest until the cancer has spread throughout the body.
About 95 percent of people diagnosed with pancreatic cancer will die within five years, the highest mortality rate of any cancer.
While hard numbers have not yet been established, research has shown that Ashkenazi Jews are slightly more likely to get pancreatic cancer than the general population. Recent studies have linked pancreatic cancer to a mutation on the breast cancer gene that is more common in Ashkenazi Jews than the general population, and researchers are looking for further genetic markers specific to the Ashkenazi Jews.
Because of this new information, Lowenstein believes that the Jewish community should advocate for more funding and research for pancreatic cancer. A handful of new information sources and research are targeting the Jewish population. Johns Hopkins runs the National Familial Pancreas Tumor Registry, with Ashkenazi Jews as a subcategory of that group. A page on the university’s Web site has information specifically for Ashkenazi Jews.
One new study targets the Ashkenazi population as a subgroup of those in the high risk category. The pilot study, run by Johns Hopkins University, is looking for early detection markers among people who have three family members who have had pancreatic cancer.
The first two phases of the study showed success in using endoscopic ultrasound to detect early changes or lesions on the pancreas — 10 out of 109 research subjects with no manifest symptoms were successfully operated on after lesions were detected. The third phase of the study will also include blood markers, CT scans and MRIs. UCLA’s Jonsson Cancer Center is one of five sites conducting the trials.
But such research on the pancreas is relatively uncommon. Without a robust network of survivors to lobby for funding, and with many fewer people diagnosed than with more common cancers — 34,000 to prostate cancer’s 234,000, for instance — pancreatic cancer is one of the least researched and most underfunded cancers.
“We are about where breast cancer research was in the 1930s, and it’s all about the funding,” said Liz Thompson, director of Research and Scientific Affairs for PanCAN, The Pancreatic Cancer Action Network.
The Los Angeles-based nonprofit funds research, advocates for more awareness among the general public and the government and runs support services for those with the disease.
About 565,000 Americans died of cancer last year, with lung cancer claiming more lives than any other form. Pancreatic cancer was the fourth leading cause, with 32,000 deaths, not far behind breast cancer’s 41,000, according to the American Cancer Society. The five percent survival rate for pancreatic cancer has remained steady over the past 25 years, while in the past 15 years the breast cancer mortality rate has dropped 2.3 percent every year. About 88.5 percent of the almost 215,000 people diagnosed with breast cancer last year will live past the crucial five-year mark, the American Cancer Society reports.
Lowenstein, who before she became sick taught French and headed the foreign languages department at Hamilton High School, has turned to PanCAN for information and support groups — support she couldn’t find in the Jewish community. While her synagogue, B’nai David-Judea Congregation, has come through with a steady flow of meals, rides and companionship, she can’t help but feel overwhelmed.
“I can’t begin to tell you how alone and scared I feel most of the time,” Lowenstein said.
She has beaten the odds so far. She’s had surgery, several different chemotherapies and radiation treatments, and is now on her second clinical trial. But the tumors have spread throughout her body.
Like Lowenstein, most people don’t detect the cancer until it has spread — and, unlike other cancers, pancreatic cancer spreads at very early stages. Vague symptoms such as abdominal or back pain, or jaundice, can be signs of pancreatic cancer, but they usually aren’t, and since the disease is relatively uncommon, doctors don’t usually go to that diagnosis immediately.
“I think that understanding the causes of the disease and developing early detection are the first steps to really preventing the disease or catching it when we can still treat it,” said Alison Klein, assistant professor of oncology at the Johns Hopkins School of Medicine and director of the National Familial Pancreas Tumor Registry.
People with three close family members with the disease are 32 times more likely to get pancreatic cancer than the general population, and having two affected relatives increases risk nine-fold, Klein said.
Other risk factors include high alcoholic intake, smoking, obesity and age — the disease primarily strikes people who are 70 or older.
In addition to the early detection studies, Johns Hopkins is working on a “vaccine” that would train the body to activate its own immune system when it recognizes proteins from the tumors.
For now, treatments for pancreatic cancer are primitive — mostly chemotherapy and radiation treatments developed for other cancers. No drugs have been developed specifically for pancreatic cancer.
Lowenstein was among the 9 percent of those diagnosed who are candidates for the Whipple surgery, a procedure that removes parts or all of several organs. It is a difficult surgery with a long, painful recovery — and the only chance for beating the disease.
But after the surgery Lowenstein learned the cancer had entered her lymph system. Over the past two and half years, complications from highly toxic chemotherapy and radiation treatments, unresponsiveness to therapies, and continued metastases have qualified her for some clinical trials and dimmed her hopes.