November 21 marks World Pancreatic Cancer Day, a reminder that the disease that took the lives of Steve Jobs and Patrick Swayze — and is currently being battled by Jeopardy! host Alex Trebek — still has an abysmally low survival rate of just 9 percent.
However, two-year survivor Nick Pifani, 44, wants other patients currently facing pancreatic cancer to remember that it’s not always a death sentence, and that patient knowledge, advocacy and genetic testing is pivotal when it comes to beating the odds.
The father of two and Mastercard employee from Delran, New Jersey, was a lifelong runner, marathoner and Ironman competitor when he was diagnosed with inoperable stage-3 pancreatic cancer in 2017.
“I started experiencing some GI issues, a little bit of stomach pain after I ate so I called the doctor for a recommendation for a GI specialist,” he says of the start of his cancer diagnosis. Soon the pain (which included back pain) became so bad that it became apparent he couldn’t eat and he couldn’t wait a month for his appointment, so he checked himself in to the ER.
“They thought it was a gall bladder issue, and did an ultrasound,” he says. “It wasn’t the gallbladder so they said they’d do a quick CT scan to check for early appendicitis.” When the CT scan revealed a mass in his pancreas, they rushed an MRI where it was revealed he had stage-3 pancreatic cancer, locally advanced and inoperable.
Though he was stunned by the news, Pifani did know he had a family history of cancer, and told the doctors that a cousin of his had been diagnosed with the same disease six weeks prior.
That information led the doctors to run a panel on genetic testing, discovering Pifani had a genetic marker for pancreatic cancer that is somewhat related to the BRCA gene.
“I found out that the genetic mutation carried some vulnerabilities, and for those vulnerabilities, platinum-based chemotherapy was very effective,” he says. He started aggressive chemotherapy treatment, along with five weeks of radiation, and his tumor shrunk to the point where it was operable. Pifani recently celebrated two years of being cancer-free. Now he’s focused on raising awareness and funding for pancreatic cancer through organizations like Stand Up To Cancer (his employer Mastercard is one of Stand Up To Cancer’s biggest donors, which is how he learned about how to get involved with SU2C), and wants to spread the word about getting tumors genetically tested. Plus, he wants people to know this can happen to anyone.
“It’s interesting when you sit in the chemotherapy room…it’s a sobering place because you see people of all ages, young and old, different races, different religions. Cancer just doesn’t discriminate,” he says. “I don’t really drink, I never smoked, I was a relatively healthy individual. It doesn’t really matter. Unfortunately sometimes bad things happen.”
Now he’s a big believer in promoting patient advocacy — and knowing your family’s health history. “As a patient, you need to become educated. The challenge with pancreatic cancer is a lot of the symptoms seem to be generic. Just because you have GI issues, it doesn’t mean you have cancer, but I think it really calls for knowing your family history.”
Some of those symptoms, according to Anirban Maitra, MBBS, Leader of the SU2C-Lustgarten Foundation Pancreatic Cancer Interception Dream Team, include pain in your upper abdomen/lower back; accumulation of fluid in the abdomen; loss of appetite or unintended weight loss; depression; blood clots; fatigue; new onset or worsening diabetes, and yellowing of your skin and the whites of your eyes, and dark urine, also known as jaundice.
Pifani worked with a genetic counselor and mapped out both sides of family health history so he could hand it out to other members of the family. “The more information that you have, the more powerful it can be,” he says.
He also says there needs to be more money for funding research and treatments‚ including genetic testing. “I’ll go to Washington D.C. next year for the third year and meet with our legislators,” he says. “We need more research and funding for early detection. Because that’s how you’re going to fight this disease. The way to catch is early because so much of the cancer is stage 3 and 4 when it’s caught, and the outcomes aren’t as good.”
Pifani is also a firm believer in patients focusing on doing what they enjoy as they try to get better. For him, it was exercise. “I have a passion for running, so I just had this theme in my head that pancreatic cancer was not going to take that away from me,” he says. “I wasn’t going down without a fight. My thought was, if I can get through a run when I’m feeling my worst, I can do anything, right? So that’s what I did.”
Like fellow patient Alex Trebek, Pifani also believes that they love and support he received from friends and family helped him cope. “Every once in a while I had the lows, but running can change the physiology of the brain so I believe it had a positive impact. I also I had so many family and friends and colleagues pulling for me — one day a police officer in town saw me running, and started running after me to talk and tell me he’d read my blog and was rooting for me. It was one of those moments that you just don’t forget.”
Pifani went back to work six weeks after his surgery, and tried to establish a “new normal” routine as quickly as possible. But he believes he now has a responsibility to help be an advocate and drive change — especially since he wants to be able to to watch his kids get married. “I worry about my kids,” he says. “God forbid if something would happen down the line, I would love to see the conversation be different. A doctor sitting down my my kid or anyone’s child and saying, ‘Listen, we have lots of different treatment options. Don’t worry about it. We have a 95 percent cure rate.’ You don’t see change by sitting on the sidelines. You need to get involved.”
He adds, “I just feel that sometimes all it takes is one person to share their story, and another person going through a tough time hears it and it gives them a little glimmer of hope. Sometimes all someone needs is a little glimmer of hope.”
Caregivers/family members of pancreatic cancer patients can find information regarding caregiver resources and support services at https://standuptocancer.org/for-patients-and-caregivers/
For more information and to donate, please visit StandUpToCancer.org. You can also connect with Stand Up To Cancer on social media by following @su2c.
For more information on clinical trials and patient information, visit pancan.org