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Pancreatic cancer awareness at MUSC by Cindy Abole Public Relations Russellville-native Clarence Russell is still holding on to hope. Just two months ago, he celebrated two special milestones in his life: his 75th birthday and golden wedding anniversary. Twelve months earlier, Russell struggled to begin four months of radiation and intense chemotherapy treatments to follow-up resection surgery on his pancreas, small intestine and stomach.  From left are: Peggy LeVeen, Clementine and Clarence Russell with Dr. Frank Brescia. It was through this life-changing ordeal that led Russell to develop a faith-filled attitude towards life. “I've learned to take life one day at a time,” he said. “Each day, I'm living life to its fullest.” Russell is a rare statistic among pancreatic cancer patients. He is one of a handful of survivors who can continue in life's normal routines. In this year alone, about 29,000 Americans will be diagnosed with pancreatic cancer. It is the fourth leading cancer in America, according to the American Cancer Society. For most patients of this disease, the results are grave. It has the highest mortality rate where nine out every 10 patients diagnosed with the disease will die. Nurse coordinator Peggy LeVeen wants to change people's attitude about the disease. LeVeen, who sees pancreatic cancer patients at MUSC's Digestive Disease Center (DDC), wants to increase efforts to educate the public about this devastating disease, especially in South Carolina. Pancreatic cancer in S.C Since 1996, its been estimated that about 250 to 300 pancreatic cancer patients have come to MUSC for treatment. One of few referral centers for the disease in the southeast, MUSC has seen a steady rise in its incidence among blacks and younger middle-aged men and women. Usually, the disease strikes people later in life but statistics are proving otherwise with increased diagnosis. “We see a lot of pancreatic cancer,” said Frank Brescia, M.D., professor of medicine, Department of Hematology and Oncology. “Unfortunately, we're seeing the disease more in younger patients —men and women in their late 30s, 40s and 50s—the prime of their working lives. It's just devastating.” Last spring, LeVeen was contacted by Caroline Dennis, coordinator for the National Pancreatic Cancer Action Network or PanCAN and was asked to head-up statewide efforts to bring education awareness throughout the Palmetto state. PanCAN is a national volunteer patient advocacy group that actively supports the need for research treatments, prevention programs and early detection methods in the fight against pancreatic cancer.  A three-fold effort LeVeen's efforts are three-fold. First, she worked with Dennis to unify South Carolina's efforts in completing awareness proclamations in all 50 states. Her hard work led to last month's proclamation of South Carolina Pancreatic Awareness Month approved by state Gov. Jim Hodges and supported by MUSC president Ray Greenberg, M.D., Ph.D., faculty and staff. Next, she wanted to promote PanCAN's awareness efforts for increased funding for pancreatic cancer research. According to the NIH, funding for pancreatic cancer trails far behind other cancers and chronic diseases including breast cancer, diabetes and kidney disease. Finally, LeVeen wants to increase research awareness at MUSC and at other national institutions. Scientists and physicians are making strong advances in surgical procedures, newer effective drug and improved treatment regimes. At MUSC, researchers are making great strides in understanding the genetic pathways of this disease that can lead to better treatment options and advanced therapies for the future. Another research milestone for the state is its collaboration with the National Familial Pancreas Tumor Registry which follows the genetics of individuals and families diagnosed with familial pancreatic cancer. Efforts for the registry have expanded in cities like Seattle, Philadelphia and other locations in California. Unlike screening tests for other diseases, there is no early detection methods to determine pancreatic cancer. Its location in the body makes it difficult for specialists to see the pancreas clearly in standard X-rays. However, its symptoms—abdominal pain, fever and jaundice are usually presented when the tumor is in more advanced stages of the disease. A flat glandular organ, the pancreas is located between the stomach and spine. It produces clear digestive juices that aid in digestion and  creates and regulates the release of insulin and other hormones throughout the body.  “There's no real measure to detect significant signs showing this disease early on,” Brescia said. “That's what makes it so devastating. By the time a person is diagnosed, it's too late to consider surgery as an option. It's hard to be aware of your pancreas when there are no symptoms that can be felt or seen.”  Smoking and high fat diets have been implicated in a higher incidence of pancreatic cancer. Even a sudden blow or injury to the pancreas can be associated with the disease. Russell's story A retired insurance salesman living in St. Stephens, Russell became alarmed when he suddenly noticed some weight loss in addition to the dry mouth and cramps that he experienced previously. He also noticed his skin was turning yellow, a sign that his bile ducts were not draining and causing jaundice. In August, Russell saw his family physician, Eric Bolster, M.D., in Summerville who referred him to a specialist who ordered an endoscopic ultrasound to determine the presence of tumors in his pancreas.  Almost immediately, a call was made to MUSC Pancreatic-Billiary service coordinator Elaine Rawls. She organized an appointment with DDC gastroenterologist John Cunningham, MD., FRCP and former MUSC surgeon Paul Baron. Cunningham performed an Endoscopic Retrograde Cholangio-pancreatography procedure or ERCP, which uses a scope to look closely at the bile ducts and searches for other obstructions. Its result confirmed a blockage in the bile duct. A stent was implanted into the bile duct relieving discomfort. Later, Baron performed a Whipple procedure, one of few treatments available to pancreatic cancer patients who meet surgical criteria. Normally a five-to-eight-hour procedure, Whipple surgery involves the removal of the pancreas, its ducts and other nearby structures including the spleen, gall bladder, duodenum and surrounding lymph nodes. “It was a scary time,” said Russell, whose own family has struggled with cancer. In one generation, Russell lost his mother, brother, grandmother, aunt and uncle to different forms of cancer. A non-smoker, Russell enjoyed a healthy life until he unexpectedly suffered a  heart attack in 1976. The event weakened about a quarter of his heart muscle.  But through his determination and his family's support, Russell was able to recover and become more active in the things he enjoyed, yard work and hunting. In April, Russell saw DDC gastroenterologist Brenda Hoffman, M.D.,who performed a second endoscopic ultrasound which confirmed that he was cancer-free. This past September, Russell returned for his routine checkup with Hollings oncologist Frank Brescia. Although his pancreas and stomach were clear, tests revealed spots in his lungs. The cancer was back. Russell has decided to return for chemotherapy and is currently undergoing treatment at MUSC. A team comes together Most patients want to be involved in their treatment and care, but making the right decisions can be confusing. The key to managing this devastating disease is through a multi disciplinary approach. No one knows that better than David J. Cole, M.D., associate professor of surgery. As a surgical oncologist, Cole leads MUSC's pancreatic cancer surgical team. “This disease is challenging and requires a team of doctors with a variety of expertise to be able to provide state-of-the-art care,” said Cole. Each Wednesday, Cole and members of the patient care team come together at the MUSC GI Tumor Board to discuss a patient's weekly treatment plan. The group consists of physicians from all pertinent specialties, research nurses and a genetic counselor who tries to address issues from surgical options, to recommendations for treatment, clinical trials and palliative care issues. “It's the best patient-care management system available,” said LeVeen. For many sufferers, the cancer is more likely to be detected in its later stages where physicians can only confirm a primary diagnosis and create a palliative care plan. For patients who are ineligible for surgery, the survival rate drops to only 3 percent.  Brescia knows first-hand about the pain, discomfort and suffering presented by this devastating disease. Last year, he lost his mother to pancreatic cancer. Not only does Brescia treat his cancer patients with care and dignity, he's also focused to help others learn how to provide good palliative care. Brescia currently works with a group of skilled nurses, oncologists, G.I. physicians and pain staff members to provide their services in all areas of the medical center.  “At MUSC, our palliative care team effort is in place,” Brescia said. “We know we need to work better at it. We need to capture what we know and build on it and learn from our successes and failures, what works and what doesn't. What we don't want to do is make patients any worse than they are.” Treatment Options Other treatment options for patients may lie in aggressive treatments which stabilize and control the tumors using effective cancer drugs like Gemcitabine. This drug combined with chemotherapy and surgery have shown more positive rates for survival, Hoffman said. Reports have shown that higher risk patients may benefit from aggressive screening techniques and treatments using a combination of tests. “MUSC's a good, reasonable center when it comes to treating patients with pancreatic cancer,” Hoffman said. “We know our limitations through the services we provide.” For a handful of these patients, surgery may be their only option for survival. But not everyone can meet the criterial for the Whipple procedure.  “We have to consider the overall health of the patient and our technical ability to safely remove the tumor,” Cole said. “Unfortunately, the local anatomy where pancreatic cancer strikes is like Grand Central Station, and often the tumor is involved with other organs or vessels.” More than 20 years ago, the mortality rate for this operative procedure was 20 percent. Today, better instruments, improved techniques and reliable pre-operative diagnostic tests, the risk falls to less than 2 percent.  “There's always an interest in helping someone who has a disease that we know we're not going to cure,” said Brescia. “We're always questioning ourselves: how much can we intervene? How much do you make sure a patient can understand regarding clinical trials and research? There's certainly a lot of things going on that we can all learn from. It's part of this group's foundation.” “What's surprising in this era of modern medicine is that detecting early pancreatic cancer is nearly impossible,“ said Hoffman. “By the time symptoms are present, the disease may be advanced and a cure is unlikely. We don't have an early detection test for screening the general populace. A big challenge is to make the patient aware of the stage of the disease, especially if it's advanced and has a poor potential prognosis without taking away hope.” Despite the physical and emotional pressures of living with this fatal disease, Russell is comfortable talking about his cancer with others. He openly talks to friends and encourages other newly-diagnosed cancer patients about his treatments, challenges and struggles. Usually, he's just there to lend a patient ear and offer support. “I've learned to put my faith in God and trust the physicians and staff who are helping me,” Russell said. “Each day, I'm looking at the bright side and have learned to accept whatever is coming.”