World Cancer Day: Overcoming the Lack of Data in the Fight Against Pancreatic Cancer

Abby Pezzulo is a successful client manager at CTI, a data and analytics consultancy, who has spent the last 20 years selling enterprise technology solutions across industries to enable her clients to make data-driven decisions. 

In 2019, Abby received the shock of her life when, at 43-years-old, she was diagnosed with a rare type of pancreatic cancer. Very quickly her focus changed from purveyor of data solutions to a cancer patient trying to consume every possible data point to understand her disease, treatment options, and chances for survival.

Abby’s story is filled with hope, resilience, and inspiration. But it also shines a light on the gaps in information available to patients and their doctors when they are forced to make decisions of the greatest magnitude, those with life-or-death consequences.

Today, on World Cancer Day, a day that encourages action and a commitment to making a cancer-free world, we share Abby’s story, which is emblematic of so many, to raise awareness of the important role that data plays in helping cancer patients find the right path to the optimal care. While we have made significant advances in recent years, we are far from providing doctors and patients with the real-world data they need to consistently make treatment decisions that result in the best outcomes, and we must do better.

Responses have been edited for clarity.

Abby, can you tell us how you were diagnosed with cancer?

abby pezzuloIn March 2018, I fainted while walking my children to school. I went to the hospital the next night where doctors discovered I had two bleeding ulcers that we would later learn were caused by hormones from the tumor. After the bleeding ulcers were treated, I remained severely anemic. I received four iron transfusions and took iron pills but my anemia persisted. I was losing blood somewhere in my body but we couldn’t identify where and why.

In the spring of 2019, after a colonoscopy and two endoscopies, a biopsy revealed I had a neuroendocrine tumor. I underwent a CT scan of my abdomen and pelvis, which showed my tumor was more than four inches long and had originated in the pancreas—a pancreatic neuroendocrine tumor.

What treatment options were available to you?

The only known cure for pancreatic cancer is surgery. However, only 20 percent of pancreatic cancer patients are candidates because of metastasis or blood vessel involvement. In my case, the cancer had not spread but I had significant blood vessel involvement. Because of this, I was presented with two different options from two of the top healthcare facilities in Boston. One cancer center recommended chemotherapy and concluded I may not be a candidate for surgery and a second cancer center decided that surgery, although risky, could be an option for me.

How did you make this decision?

It really came down to trust in my surgical oncologist and my desire to live a cancer-free life. Pancreatic cancer research is chronically underfunded so there wasn’t a lot for me to go on. I wasn’t able to compare outcomes for other patients who had similar biologic and disease profiles because that data isn’t readily available. Also, because my surgery carried risks due to the size of the tumor and blood vessel involvement, there are only a few surgeons who are willing to perform it. It’s actually quite remarkable, that in just about every other industry, we exhaustively collect and analyze meaningful data so we can make informed decisions – but in healthcare, in oncology, when people’s lives are on the line, it’s like we’re living in a vacuum. 

Ultimately, I underwent five cycles of oral chemotherapy which did not shrink the tumor but did show a positive biochemical response. I am so fortunate my surgeon was willing to take the bold step of performing surgery even though there was blood vessel involvement. I had the
 Whipple surgery on November 11, 2019 to remove my entire PNET tumor. Additionally, my surgeon removed 75 percent of my pancreas, my gallbladder and parts of the small bile duct, stomach and small intestine. He also excised a portion of my portal vein, which was extremely risky, as this blood vessel carries blood from the gastrointestinal tract to the liver.

What was the outcome of your surgery?

While I have some minor gastrointestinal issues stemming from the surgery, I feel great and have learned how to manage them by taking pancreatic enzymes. I am incredibly thankful I do not need further treatments and my most recent scans showed no evidence of disease. I will continue to undergo regular scans and tests, but my oncologist is optimistic I can start a new chapter post-cancer.

Learn more about pancreatic cancer and research at the Lustgarten Foundation