Two years ago, Nancy Wiener Marcus, a Dallas native with chronic pancreatitis and a passion for civic responsibility and social advocacy, learned some alarming facts about the very serious dangers of pancreatic cancer. She also learned that through genetic testing and early intervention, pancreatic cancer can be prevented. She met gastroenterologist and interventional endoscopist Dr. Nisa Kubiliun, an assistant professor of internal medicine and Director of the UT Southwestern Pancreatic Cancer Prevention Program, who is developing a biorepository and database for research. Impressed by Dr. Kubiliun’s pioneering work in the field, she generously established the Nancy Wiener Marcus Fund for Pancreatic Cancer Prevention Research at Southwestern Medical Foundation.
“I am dedicated to helping lower the death rate from pancreatic cancer. In less than a decade, it may be the second leading cause of cancer deaths,” Nancy says. “This program is one of only a handful in the nation, and its doctors are dedicated to not only finding a cure for pancreatic cancer but to ‘nipping it in the bud’ before it becomes terminal for the patient.”
Nancy Wiener Marcus isn’t a “fund and run” philanthropist, she works closely with the Pancreatic Cancer Prevention Program and the Southwestern Medical Foundation to promote awareness of the program.
“I want everyone to be aware that this terrible disease is preventable,” she says with palpable warmth and authentic concern.
Dr. Theodora Ross, who is part of Dr. Kubiliun’s multidisciplinary team, is a professor of internal medicine and Director of the Cancer Genetics Program in the Harold C. Simmons Comprehensive Cancer Center at UT Southwestern Medical Center. A “gene hunter” by trade, Ross also happens to be a carrier of a cancer-causing mutation. She knows what it’s like to wait for that phone call from a genetic counselor, and she has experienced receiving the bad news. But Theo Ross couldn’t be more clear that receiving bad news about genetic predisposition, accompanied by serious advice to create a cancer prevention plan, is far preferable to other bad news one might receive.
“Pancreatic cancer is silent. If you’ve got symptoms, the situation is dire. The five-year survival rate is 5-9%. Every Ashkenazi Jew should be tested because one in 40 will have the mutation that puts them at risk of pancreatic, breast, ovarian, prostate and skin cancer.”
She notes that women are statistically 95% more likely to come for genetic counseling than men and warns that pancreatic cancer has been found to affect far more men than women.
Dr. Ross says more than 20,000 patients have been seen at UT Southwestern’s Cancer Genetics Program in the past 10 years and, out of the 700 patients who have been screened through the Pancreatic Cancer Prevention Program that Nancy Wiener Marcus has helped fund, no one has been turned away because of insurance issues.
With recommendations from a genetic counselor, patients can now take a simple and affordable blood test ($250) to be screened for gene mutations that point to an increased risk of developing the disease. This information informs the patient’s prevention strategy, which may include routine surveillance imaging of the pancreas to monitor for changes.
“Commercial genetics testing providers like 23 and Me are dangerous,” Ross warns. “They market with the message that knowledge is power, but their data is not reliable. They are only testing three mutations out of thousands that we test.”
Dr. Nisa Kubiliun emphatically agrees that genetic testing is vital in the prevention of pancreatic cancer, and it is also a gateway to the research necessary to better understand pancreatic cancer.
“If you have personal history of certain cancers or a family history of cancer, you should consider seeing a geneticist,” she says. “Beyond that, if you are found to have a genetic predisposition which puts you at risk of pancreatic cancer, then blood tests, MRIs, endoscopy findings, and cyst fluid sampling are very important – not just to your individual case, but to medical science,” she says.
“A direct consequence of Nancy’s generous gift is that we are building a biorepository of blood and cyst fluid samples to analyze. We don’t yet know enough about what causes pancreatic cancer, but this research is helping.”
The tragedy of a pancreatic cancer diagnosis is that, often, by the time a patient realizes anything is wrong, the disease is already very far advanced. The pancreas, Kubiliun notes, is deep within the belly and a common symptom of pancreatic cancer is back pain, not something that people associate with either their pancreas or cancer. In too many cases, treatment options are of limited value.
“Until effective treatment strategies for this disease are developed, the most powerful tool currently available is preventing cancer before it develops. Prompt, precise evaluation by a multidisciplinary team of physicians and caregivers who specialize in pancreatic diseases is the most effective way to minimize the risk for developing pancreatic cancer.”
Dr. Kubiliun explains that the Pancreatic Cancer Prevention Program at UT Southwestern Medical Center has assembled a team of experts from specialties including radiology, gastroenterology, surgical oncology, and cancer genetics with the goal of preventing pancreatic cancer by identifying and screening high-risk individuals. The pancreatic cancer prevention team combines unparalleled commitment, broad-based collaboration, and, most importantly, scientific and medical expertise to care for each patient. The team works as a think tank before they work in clinic.
“Our multidisciplinary team comes together every Friday morning at 11 to create a comprehensive treatment plan for each individual before they are seen, and then patients are presented with that plan in a single visit,” Kubiliun says.
If a patient has a BRCA1 or a BRCA2, there are drugs that some patients respond to, but a cancer prevention plan might include further genetic testing, endoscopic ultrasound, or surgery.
What if a patient is found to be genetically predisposed to pancreatic cancer? What if there is a family or a personal history of cysts or lesions? What if a tumor is present? Is prophylactic removal of the pancreas in order?
Drs. Ross and Kubiliun exchange glances across the table they are sharing with Nancy and me.
They tag team and don’t mince words.
Dr. Kubiliun says: “It is primetime now. We are looking for pre-cancerous signs. Ideally, people with elevated risk due to genetic predisposition are undergoing regular MRI surveillance. The goal is that we’d catch any lesions – if not prior to tumor formation, then in the very early stages.”
Dr. Ross says: “If pancreatic cancer symptoms exist, if there’s a tumor, the prevention system has failed.”
Dr. Kubiliun says: “With a diagnosis of pancreatic cancer, there is a 92% chance of not being alive in five years.”
We let these sobering ideas and that cruel statistic hover for a quiet moment. Then Dr. Kubiliun says:
“With a surgical resection of the diseased portion of the pancreas our goal is to prevent pancreatic cancer from ever developing.”
“Your pancreas or your life,” I muse, picturing a tiny organ that’s hidden behind my stomach. Who ever even thinks about their pancreas unless there’s a problem? No one. That’s why this cancer doesn’t have the PR profile of breast, lung, or even colon cancer. That’s why Nancy Wiener Marcus has made this her cause.
We’ve been talking intensely for over an hour. Now, in silence, our collective gaze falls on the large white board spanning an entire wall of Dr. Ross’s office. There are scientific notations everywhere. It’s colorful and fascinating. But among the equations and medical jargon, there are discernable statements. “Lumps of coal are not necessarily diamonds” is one that jumps out.
“What’s SIUBC’?” Dr. Kubiliun asks Dr. Ross in an earnestly curious, collegial voice.
Nancy and I smile politely at each other, expecting the answer to go above our heads and beyond our possible comprehension.
“Suck it up, Buttercup.”
We all crack up. There’s nothing whatsoever amusing about cancer, but life is funny. And so is calling someone “Buttercup.” That’s just hilarious. Especially after hearing scary information like one in 40 Ashkenazi Jews will have the predisposition to develop a deadly disease which – even with good treatment – offers a dismal five year survival rate.
“That’s one of my mom’s favorite sayings. SIUBC’.” replies Ross. “With the Slavic umlaut for full effect.”
Light streams in the window and the doctors share a hearty laugh.
There’s something wonderfully reassuring and life affirming when medical researchers and doctors prove to be as human as their patients. We all have mothers, our mothers all have sayings. We all enjoy a good laugh and we are all vulnerable.
As a community, we Jews are especially vulnerable to a specific cluster of deadly diseases. Nancy Wiener Marcus put her money where her heart was, in prevention. Now it’s up to you.
SIUBC’, schedule an appointment for genetic testing. If you discover you carry the gene mutation for pancreatic cancer predisposition, or if you already have any pancreatic abnormalities such as cysts or certain lesions, contact the UT Southwestern Pancreatic Cancer Prevention Program. It doesn’t matter if you are working with a doctor at another hospital, you can still be followed in the prevention program and allow your cells to be collected, banked, and studied by Dr. Kubiliun’s research team and, in this way, you can contribute to the prevention of this deadly disease.
Visit https://utswmed.org/conditions-treatments/pancreatic-cancer/ to learn more and to schedule an appointment online. If you prefer to request an appointment by phone, please call (214) 645-8300.
To learn more about the intersection of genetics and health, read A CANCER IN THE FAMILY by Dr. Theodora Ross, M.D., Ph.D.
In A CANCER IN THE FAMILY: Take Control of Your Genetic Inheritance (Avery-Penguin/Random House, February 2016, available in hardcover, paperback, eBook, and audiobook), oncologist Theodora Ross delivers a comprehensive guide for people facing a genetic predisposition for cancer. Based on her belief that knowing is better than not knowing, and that clarity is better than confusion, Ross shows there are options for cancer prevention and risk management that put you in control, not the cancer.
By the time she graduated from the medical scientist M.D. and Ph.D. training program at Washington University School of Medicine in St. Louis, Ross needed both hands to count the family members who had developed cancer – a tally which included her mother, father, aunt, uncle, and multiple siblings. When Ross herself was diagnosed with melanoma, despite her dark complexion, she began to believe her family’s history of cancer was likely more than just an unlucky coincidence.
Invigorated by the desire to take control of her health and future, Ross made it a mission to discover the roots of her family’s genetic cancer history, and to teach others how to do the same.
Ross encourages readers to shed the veil of cancer secrecy themselves, and to delve into their family history in search of real answers. She provides tips about how to fill in the missing holes in your own family’s genetic history.
A CANCER IN THE FAMILY is both pragmatic and anecdotal – Ross intersperses accounts of her own family’s experience with discovering the truth about their genetic cancer inheritance with concise, straightforward tutorials in genetics, to help demystify the science behind cancer and gene mutations.
With an empathetic, yet experienced voice backed by evidence, Ross shows how arming yourself with a complete family cancer history can mean having one of the best health tools available in modern medicine at your disposal.
A thought-provoking, important, and enjoyably readable work with family and medical mystery at its heart, A CANCER IN THE FAMILY would be an ideal choice for book clubs and discussion groups.