In early 2012, Bob Manning went to his local hospital with a stomachache that had been nagging him for two weeks.
“My wife, Ronnie, stayed awake in my hospital room all night while I recovered from my diagnosis procedure. Finally, in the dark of the early morning the next day, Valentine’s day, she broke the news."
And it was the worst possible news: At 64, Bob had pancreatic cancer.
Bob and his wife knew very little about pancreatic cancer except that the outlook was infamously bleak. Few pancreatic cancer patients live to see the six-month anniversary of their diagnosis.
"The very first thought that passed through my mind was 'What?! How can I be dead in six months? I feel too good.'"
A Fact-Finding Mission
Bob spent hours doing research on every reputable medical website he could find. Around every corner, he encountered hopelessness.
"I found no life expectancy tables for pancreatic cancer patients that went past six or seven years. At the time, nearly everyone died within 18 months, with most in the first nine months. One dark day, Ronnie, my wonderful wife, looked me in the eye and said, 'You're alive today. Live it. The day you die is the only day you die of cancer.' That changed my perspective to a more positive way of thinking."
In March, Bob underwent a Whipple procedure. Also known as a pancreaticoduodenectomy, this is a complex operation to remove the head of the pancreas, the first part of the small intestine (duodenum), the gallbladder and the bile duct. It went fairly smoothly, and Bob completed rehabilitation earlier than expected.
“My wife played Going Home by the Beatles on the car radio after I’d been discharged. We both cried. I had wondered if I'd ever see home again."
Determined to make his next move a smart one, Bob took his research up a notch. He came across a pancreatic cancer conference held at Penn Medicine and live-streamed it on the web.
“I watched it and thought, ‘Wow, Penn does a great job of explaining a highly technical topic in easy-to-understand terms.'"
Bob was also encouraged by the story of a survivor from Penn who talked about surviving for two years after a pancreatic cancer diagnosis and beating the odds. Bob decided to do whatever he could to change his own individual odds.
Backed by his research, and recommendations from his doctor, the next steps became clear.
“I knew Penn’s reputation, so we made an appointment and met with Dr. Peter O'Dwyer at Penn Medicine’s Abramson Cancer Center in May. He answered every question we had – and there were a lot of them, including some skepticism about treatment styles in the United States versus treatment styles in Europe. Dr. O’Dwyer outlined factual support for every step of Penn’s process.”
Confidence in His Care
Beyond expertise, the friendliness Bob and Ronnie encountered at Penn underscored their confidence that they'd come to the right place.
"Everyone from the custodial staff to the coordinators greeted us warmly, making sure we had what we needed and knew where to go. I knew the odds were still against me, but also knew there was no better place to undergo treatment than at Penn."
Bob embarked on 15 rounds of chemotherapy treatment. A South Jersey resident and computer analyst, he continued working full-time while making the 45-minute drive to Philadelphia for treatment once a week.
"I had the normal ups and downs of chemo. A few days after each treatment I’d feel achy and run a fever, like I had the flu. My first chemo session resulted in a severe gout attack that sent me to the ER. Dr. O'Dwyer told me that was actually a good sign because dying cancer cells give off uric acid. It was a sign that the chemo was working."
Still, the low survival rates among pancreatic cancer patients haunted him.
"I felt I was being gypped because time with my loving wife would likely be cut short. There was one day when we sobbed together. I thought of Jim Croce's Time in a Bottle":
If I could save time in a bottle
The first thing that I'd like to do
Is to save every day
'Til eternity passes away
Just to spend them with you
Hope – and Hurdles
It was around this time that Dr. O’Dwyer introduced Bob and Ronnie to James Metz, MD, the head of Penn’s Department of Radiation Oncology. Dr. Metz told Bob he wanted to get him into a clinical trial for proton therapy, a non-invasive form of radiation therapy with fewer side effects than chemotherapy and traditional radiation.
By and large, proton offered better outcomes. The proton therapy would deliver a precisely targeted beam of high-speed protons at a designated point on Bob’s stomach to destroy the DNA of the pancreatic cancer cells and reduce the chances that they would multiply. The precision protons offered also reduced the damage to surrounding healthy tissue and organs – the underlying reason for reduced side effects.
Having the only, and the largest and most experienced, proton therapy center in the region just an hour away was a glimmer of hope for Bob and Ronnie – but before it could fully set in, another hurdle appeared.
“My insurance company initially turned down my request for this clinical trial coverage for proton,” Bob remembers. “That’s when Dr. Metz got on the phone and rallied on my behalf – successfully. I was the first patient that my healthcare provider had ever approved for proton therapy.”
Proton Therapy – Painless and Promising
Bob embarked on six weeks of treatment at Penn’s Roberts Proton Therapy Center. To prepare for his treatments, Bob underwent a simulation to confirm the exact location on his to be treated treat. First a small tattoo the size of a pencil point was inked onto his stomach to be used as reference for positioning at each treatment. Next, plastic molds were made to match the exact contours of his internal organs that were to receive the proton radiation – molds that direct the beam to its target with great precision.
“I underwent 30 treatments over about six weeks – so generally about five days a week.”
During each outpatient proton therapy session, Bob laid on his back on the treatment table for 30 to 60 minutes as the walls of the proton gantry moved around him to direct the proton beams at precise points on his body.
After each treatment, Bob felt great; he didn't experience any noticeable side effects.
"It was like a science fiction movie!" he says with a laugh. "It wasn't painful at all. I was able to dress myself at the end of each session and drive myself home."
Six months after his diagnosis, Bob finished radiation, felt good, and was "determined that I was going to beat the odds."
Life is Beautiful – and Cancer-Free
Nearly six years after being diagnosed with pancreatic cancer, Bob is cancer-free and had beaten the odds that had clouded him with worry at the start of his journey. He saw Dr. Metz every six months and Dr. O’Dwyer once every three to six months following treatment. Right at the five-year mark, Bob was able to transition his follow up visits to once a year.
The first cancer-free holiday season was particularly special.
"We had a joyous family reunion at Christmas in 2012 with all five children and their spouses from our combined family. Our children are spread across the country from Connecticut to California, so it was a big accomplishment to get everyone together at the same time. That was 10 months after my diagnosis. I had beaten some of the worst odds. I was alive long past the six-month milestone and beyond the nine-month milestone at which statistically most pancreatic cancer patients had died."
Bob's good health and great outlook continue. He and Ronnie have plans to travel by train down the west coast to visit their children and grandchildren, and are thinking about a trip to Spain.
While cancer worries still linger, "It's just a fleeting moment of worry that reminds me to live today and not let cancer invade and corrupt my psyche," Bob says. "It actually gives me strength. You'll never look at life the same after cancer. And believe it or not, that's a wonderful gift."