Pancreatic Cancer Action Network

— Robin Warshaw

Pancreatic cancer has the highest mortality rate of all major cancers. About 75% of patients die within 12 months of diagnosis. Only 6% survive for five years.

Little has been defined about risk factors for this deadly disease, but it is known that Jews of Ashkenazi descent are at significantly higher risk of developing pancreatic cancer than the general public. In the U.S., pancreatic cancer is the fourth leading cancer killer. In Israel, it’s the third leading cancer killer.

The Pancreatic Cancer Action Network is a nationwide network of people dedicated to working together to advance research, support patients and create hope for all those affected by pancreatic cancer. The organization began in 1999, when a handful of families who had lost loved ones came together to change the dire statistics of the disease. Now there are more than 70 Pancreatic Cancer Action Network affiliates across the U.S., including an active group that serves the Philadelphia region (the city and all of southeastern Pennsylvania).

More after the jump.
The Philadelphia Affiliate helps build public awareness about pancreatic cancer through education and outreach, taking part in community health fairs, visiting healthcare professionals and connecting patients/survivors with the free services and information offered by the national organization. Local affiliate members also advocate for more funding for pancreatic cancer, by taking part in phone-ins as well as visiting the area’s legislative representatives, in support of the Pancreatic Cancer Research and Education Act, re-introduced in the House and Senate in early 2011 by Sen. Sheldon Whitehouse (D-RI), Rep. Anna Eshoo (D-CA) and Rep. Leonard Lance (R-NJ).

Increasing research funding is especially important. The survival rate for pancreatic cancer has remained virtually unchanged-and dismally low-for nearly 40 years. Yet the National Cancer Institute allots less than 2% of its research budget to pancreatic cancer. The Pancreatic Cancer Action Network not only advocates for better federal research funding but also drives development of a robust research community through its own research grants program. This strategy encourages knowledge sharing, innovation, support for early-career pancreatic cancer scientists, and more.

Locally, the affiliate partners with the Cancer Support Community of Philadelphia (formerly The Wellness Community) to offer the only pancreatic cancer support group in the region. Free and open to all pancreatic cancer patients/survivors and their loved ones, these meetings, which are led by a professional oncology social worker, explore many issues related to treatment and living with pancreatic cancer.

Like all Pancreatic Cancer Action Network affiliates, the Philadelphia group is comprised entirely of volunteers. These members include patients and survivors, family caregivers, those who’ve lost loved ones, friends and health-care professionals. Their efforts expand the circle of support for those who are struggling with living with the disease, while they also fund-raise for increased research and other services of the national organization.

In the Philadelphia area, there are two major affiliate fund-raising events to benefit the Pancreatic Cancer Action Network. Night of Hope, a gala with live and silent auctions, will be held June 25, 2011, 7 pm to 11 pm, at the Hilton Philadelphia City Ave. Volunteers are needed to help with this event. Sponsorships and donations of auction items are appreciated. For details and information, contact Ferne Liez at [email protected]  

PurpleStride Philadelphia 2011, a 5K walk and run, will be held Nov. 5, 2011 at Memorial Hall in Fairmount Park (near the Please Touch Museum). Last year’s event drew 3,300 registrants and raised more than $478,000 for pancreatic cancer research and patient support. Volunteers, teams, individuals and corporate sponsors can all make a difference in the fight against pancreatic cancer through PurpleStride Philadelphia.

To learn more about PurpleStride Philadelphia or other affiliate activities-or to join the Philadelphia affiliate mailing list-please contact Robin Warshaw at [email protected]

The Philadelphia Affiliate of the Pancreatic Cancer Action Network is on Facebook or follow on Twitter @pancanphilly. Other information may be found on the affiliate page on the national organization’s website.

A Little Girl, A Big Story

Keren Rabinovich at Rambam Medical Center. (Photo: Pioter Fliter.)

— Michele Segelnick

Last month, a four year old girl underwent surgery at the Rambam Medical Center in Haifa for an exceptionally rare tumor, which was in her pancreas. In fact, Keren is among the youngest people in Israel and throughout the world to have been diagnosed with pancreatic cancer. Insightful – and bold – diagnostic skills and top notch surgery saved the little girl’s life.

In November 2010, a local hospital sent four-year old Keren Rabinowitz to Rambam for serious and unexplained abdominal pain.   A CT scan examined at RHCC showed that Keren’s bile ducts were obstructed, causing jaundice, and indicating a tumor could be in the bile ducts or pancreas.

More after the jump.
Suspecting cancer, head of the hospital’s Endoscopic Ultrasound (EUS) Service, Dr Jesse (Yishai) Lachter conducted a biopsy, which verified that the child had a malignant neuro-endocrine tumor of the head of her pancreas. Uncommon  in adults, such tumors are almost unheard of in children. In fact, the well-known cancer hospital, Memorial Sloan Kettering Cancer Center in New York, has seen only 30 cases of any pancreatic tumors among patients of any ages under 21.  

Dr Lachter’s decision to do the biopsy was bold. “Rambam is doing a lot of cutting-edge pancreatic work, and we have the latest equipment, but pediatric endoscopic ultrasound devices for taking biopsies do not exist anywhere,” he says. Despite the lack of tools and medical community’s inexperience in handling pancreatic growths among children, Dr Lachter did the procedure. “We took a chance and it worked out well,” he says. “We don’t give up easily.”

The good news was that while cancerous, Keren’s growth could be removed.  Unlike many other pancreatic tumors, this rare type of tumor was definitively identified; it had been diagnosed in time and was operable.

“Rambam gave my little princess a chance to live,” said Keren’s mother, Valentina Vobek, who stood behind the hospital team all through this trying time. “Keren’s parents were terrific,” says Dr Lachter. “Even though we had never faced this type of problem, they were supportive, trusting and hopeful throughout.”

A true multi-disciplinary effort, Keren’s treatment also  involved  pediatricians, pediatric gastrointestinal specialists, general surgeons,  a pediatric surgeon,  a general anesthesiologist and a pediatric oncologist. The Rambam doctors involved have submitted the lessons from this case for publication, to share their newly-found knowledge with the medical community.
Pediatric Surgeon Dr. Marc Arkowitz performed the operation together with Prof Yoram Kluger, Head of General Surgery.

Several days afterwards, the little girl was home from the hospital and eating regularly. At this point, she will not receive post-operative treatment, but must be monitored by Dr Arkowitz every few months. “I am very optimistic about the outcome here,” says Dr Arkowitz. “Keren was diagnosed correctly and her surgery went well. She had a very rare tumor, especially for such a young patient. For me, this was a once-in-a-career case.”
Incidentally, Dr Arkowitz’s career and that of Dr Lachter began in New York, where they were both born and raised. Having immigrated to Israel in 1979, Dr Lachter is now a veteran Israeli. Dr Arkowitz made aliyah just one year ago.

A father of four, and new grandfather, Dr Lachter admits to having been strongly emotionally involved in this care of a small child. “Keren is four now, but she may well live to be 84, the average life expectancy for women in Israel,” he says, “This is a happy ending to a rare case.”