The CAPS Study Changed My Life
My family has been plagued by pancreatic cancer for the past three generations, and I fear future generations will continue to hear the agonizing words, “You have pancreatic cancer.”
Based on my grandfather’s symptoms, my family believes he had pancreatic cancer, even though proper diagnostics were not available in the late 1940s to confirm his illness. He died when my mom was only 14 years old. Then, in 1998, my mom was diagnosed with Stage 4 pancreatic cancer. The surgeon closed her up during surgery because her cancer had already metastasized, and she died 15 months later, a loss too devastating to ever recover from.
The vise-like grip the disease had on my family continued into my generation. In 2013, one of my four brothers was diagnosed with Stage 2B pancreatic cancer, which had spread to his lymph nodes; he was only 53 at the time and in excellent health otherwise. My family and I were in disbelief and were completely heartbroken that this same disease could strike three times in one family.
When my brother was diagnosed, he conducted extensive research to identify the best treatment facility and chose Johns Hopkins in Baltimore, given their expertise in both researching and treating pancreatic cancer. He underwent a Whipple procedure—a complicated surgery to remove part of his stomach, the duodenum (the first part of the small intestine that connects to the stomach), the head of the pancreas, part of the bile duct, the gallbladder and lymph nodes in the area of the pancreas. This grueling procedure provides the best chance of long-term survival for pancreatic cancer patients. Once he recuperated, he participated in a clinical trial for FOLFIRINOX, now a standard-of-care chemotherapy treatment, and a clinical trial for a pancreatic cancer vaccine.
Given our family history of pancreatic cancer, his doctors recommended he undergo genetic testing to determine if there was a genetic mutation amplifying our family’s predisposition for pancreatic cancer. Genetic testing revealed he had the BRCA2 gene mutation, which increases the risk for pancreatic cancer, as well as other cancers such as breast, ovarian, and prostate. We assumed our mother and grandfather must have had this mutation also. Despite my brother’s relentless fight against pancreatic cancer, he passed away when he was just 56. His death was a time of profound grief for our family and also a wake-up call for my four remaining siblings and me. All five of us decided to get tested for the BRCA2 mutation. One brother and I tested positive for it, causing a ripple of fear but also strengthening our resolve to be more proactive in managing our health.
With the goal of lessening my chances of getting pancreatic cancer, in 2016, I joined the Lustgarten Foundation and National Cancer Institute-sponsored Cancer of the Pancreas Screening (CAPS) Study at Johns Hopkins, led by Michael Goggins, MD, Director of the Early Detection Research Laboratory at the Sol Goldman Pancreatic Cancer Research Center at Johns Hopkins. The study is aimed at people like me who are considered at high risk for pancreatic cancer due to a family history or genetic mutation. CAPS is the first multi-center national study to detect pancreatic cancer and its precursor lesions among individuals with an inherited risk for pancreatic cancer. Participants are offered genetic counseling and pancreatic screening, which may include a combination of endoscopic ultrasonography, MRI, and CT scans.
In retrospect, I should’ve joined the study sooner, but life gets busy and I kept putting it off. In 2017, I was diagnosed with, and treated for, Stage 1 breast cancer, and luckily, I never had a recurrence. I continued my annual monitoring through the CAPS Study, and in November 2020, when I was just 58, I had an MRI, followed by an endoscopic ultrasound when the doctors saw something suspicious. The biopsy confirmed it was pancreatic cancer. I was devastated to hear those words, but I also felt hopeful because the pancreatic cancer was caught very early, which is uncommon for this life-threatening disease.
After getting a second opinion, I decided to undergo robotic Whipple surgery at Johns Hopkins. I had the surgery on December 4, 2020, and the tumor was diagnosed as Stage 1 pancreatic cancer. I’m so blessed the surgeon successfully removed all my cancer with clear margins. To help ensure no cancer cells remained in my body, my oncologist prescribed 12 rounds of FOLFIRINOX, which I started in January 2021 at Rutgers Cancer Institute of New Jersey. I received an eight-hour infusion, followed by a pump I’d take home for another two days to continually administer more chemotherapy into me, every two weeks for six months.
Due to COVID protocols, my husband wasn’t permitted to accompany me to surgery or to my chemotherapy appointments, and none of my family members could visit, which made the entire experience of fighting this disease infinitesimally worse. However, I persevered through the onslaught of severe chemotherapy side effects, including nausea, vomiting, and terrible abdominal pain and am now back at work part-time. Through it all, my husband was my caregiver and remains my rock and my constant support.
I encourage anyone with a family history of pancreatic cancer to speak with a healthcare provider about receiving genetic testing and joining a screening program. Through the CAPS Study, my disease was caught before any symptoms appeared that would’ve alerted me to see a doctor. If I wasn’t in that study, it may have been too late by the time my cancer was discovered for surgery to be an option. Today, my oncologist assures me I have an excellent chance for long-term survival, and I’m also grateful my other brother with the BRCA2 mutation, in addition to my niece who also learned she has the mutation, are now in a monitoring program and doing well. I have scans every six months and blood work every three months, and I’m thankful they continue to show no evidence of disease.
I don’t take for granted how blessed I am. I remember my grandfather, mother, and brother, who lost their lives to pancreatic cancer, and I’m reminded to live the best life I can and be as vigilant about my health as possible to honor them. I don’t let small things bother me anymore, and I make a concerted effort to keep my anxiety about the disease returning in check. I focus on the positives in my life, including my wonderful family and friends who all came for a barbecue to celebrate when I finished treatment.
There’s no way to thank the Lustgarten Foundation’s community enough for their support. This cherished community—a dedicated group I’m honored to have benefitted from—helped fund the CAPS study, and without that study, I probably wouldn’t be alive today.