Health & wellness

STAT

A man’s desperate quest for a brutal surgery

Stephen Phillips is prepped for appendix cancer surgery.
STEPHANIE STRASBURG for STAT
Stephen Phillips is prepped for appendix cancer surgery.

PITTSBURGH — The operation is so terrifying some call it the Mother of All Surgeries. It can take 16 hours. The risk of complications is high. And after 30 years of research, doctors are still arguing about how well it works.

But as Stephen Phillips shimmied himself onto the operating table one recent morning, he was almost relieved. He’d spent five months desperately trying to arrange this surgery in the hope that it would beat back his rare cancer of the appendix.

Now, as the surgeon scrubbed in, Phillips was as ready as one can be to have his innards scraped with electrified wires and sluiced with hot poison.

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“It’s been referred to as barbaric. It’s been referred to as having up to 10 abdominal surgeries at once. It’s not for the faint of heart,” he’d said a few weeks earlier. He was nervous but also eager. “It’s like gearing up for the Stanley Cup championship and the Super Bowl, all rolled into one.”

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STAT followed Phillips for three months on a winding odyssey that started at his home in Springfield, Mass. He consulted nine medical teams in seven states, fought with his insurance company, and dragged himself to appointments in distant cities when he could hardly walk.

To appendix cancer patients, Phillips’s frenzied medical crusade is familiar. Most are told in no uncertain terms that their condition is fatal. But the Internet tells them otherwise. A Google search brings them to descriptions of this marathon surgery — cytoreduction combined with heated intraperitoneal chemotherapy, or HIPEC, for short.

Fifteen years ago, the number of US hospitals performing the procedure hovered at about 10. Now, the number is closer to 100 — but many patients are reluctant to trust doctors who are newer to this procedure, and experts say they’re right to be wary.

For the patient to survive, gloved hands need to feel out and remove every last tumor in the patient’s belly — no mean feat when the malignancies hide among loops of intestine and nestle into the deepest, darkest corners of the peritoneum. The protocol then calls for hot chemotherapy to be pumped into the belly to take care of any remaining cancer.

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If the surgeon has missed even a single tumor nodule, the cancer could grow back again even before the patient has recovered from surgery.

And so, patients hunt for a surgeon they can trust.

Phillips’s saga, like that of many appendix cancer patients, began with a misdiagnosis.

Late last September, just after a dinner to celebrate his 31st wedding anniversary, a sharp pain flashed through his lower right abdomen. The next day he was rushed into surgery for appendicitis: a routine 20-minute operation, the surgeon told him.

Instead, the surgery lasted hours. Phillips had appendix cancer that had metastasized: The cells that lubricate the intestinal tract with a mucous-like jelly had mutated out of control, making their way from inside his appendix out into his abdominal cavity. Tumors had formed.

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The prognosis wasn’t good. If left there, the tumors would grow, push up against his organs, block his digestion, and probably starve him to death.

‘There are some institutions that don’t do this type of procedure, and say that we don’t have enough data to support doing it. And then you have the other end of the spectrum, the zealots.’

Phillips, 58, was no stranger to terminal cancer. For over a decade, he’d volunteered his legal services to hospice patients, drafting wills and powers-of-attorney, driving patients to appointments, watching Patriots games by hospital bedsides.

Phillips knew that this kind of diagnosis meant he had to act fast. But he couldn’t take charge of his own medical case. He could hardly get out of bed. It was his younger brother Joe who, the night of the diagnosis, began to Google appendix cancer. And the term that kept coming up was HIPEC.

Steve Phillips’s life depended on a procedure almost as contentious as it is invasive.

The package — cytoreduction and HIPEC — had been dreamed up as a kind of super-treatment for stubborn tumors that had metastasized into the abdominal cavity and were mostly unreachable by intravenous chemotherapy.

The idea: Start the patient on IV chemo, then open him up and scrape away all the tumors. Then heat chemo to 107 degrees Fahrenheit, because tumor cells are thought to be more susceptible to high temperatures than normal cells, and pump it straight into the patient’s belly. Slosh it around for almost two hours. Suction it out.

In the 1980s, the procedure first borrowed from Japan, was considered a gamble. Since then, experience with it has lowered mortality rates. But it remains controversial.

“There are some institutions that don’t do this type of procedure, and say that we don’t have enough data to support doing it,” said Dr. David Bartlett, a surgical oncologist at the University of Pittsburgh Medical Center, who estimates that he has performed the operation more than 1,000 times. “And then you have the other end of the spectrum, the zealots.”

They believe it’s unethical to do clinical trials in which some patients won’t get the heated chemo, as that would deprive them of the full treatment.

Yet to Dr. David Ryan, chief of hematology and oncology at the Massachusetts General Hospital Cancer Center, that’s exactly the kind of research that’s needed. If a surgeon can cut out all the tumors, the patient has a better chance at survival, but he isn’t convinced that the heated chemotherapy has any therapeutic effect.

Reams and reams of research have been published about the operation. In 2012, one paper reported that 63 percent of patients with less aggressive forms of appendix cancer survive at least 10 years if they have IV chemo, cytoreduction, and HIPEC all together.

But many experts take issue with these findings, as well as much of the literature about cytoreduction and HIPEC. They are skeptical about the selection of patients and say the protocols weren’t rigorous enough to understand the benefit of the heated chemo.

More exacting studies — notably a randomized controlled trial in France — are finally on their way.

But Steve Phillips couldn’t wait for those. He could hardly walk. In two weeks, he’d had one surgery to take out his cancerous appendix, another to repair leaky sutures.

But on the October morning after he was discharged, he woke at dawn and dragged himself to the car, where Joe would drive him the 90 miles to Boston to meet two different teams of HIPEC specialists.

The trip wasn’t just about Phillips choosing a surgeon. Most doctors would refuse him if his tumors had spread too much, or if he were too weak.

Walking from his house to the car had Phillips doubled over in agony.

“I’m ready to get in a wheelchair,” he said. “And my brother and my son say, ‘No, you can’t get in a wheelchair. You’ve got to frickin’ walk in there and show these guys that you’re ready.’ And so that’s what I did.”

During the following weeks, Steve, Joe, and Zita also drove south to New York and east to Worcester, to consult more experts. They flew to Pittsburgh. They sent scans of Phillips’s insides to Maryland, New Jersey, Texas, and Washington, D.C.

They read scientific papers and old news articles, picked apart statistics from clinical trials, reached out to patient advocacy groups for advice. They waged — and won — a war against Steve’s insurance company’s initial decision not to cover the procedure.

When interviewing surgeons, he and Zita and Joe had a standard question: How many times have you done this procedure?

But they also asked: If you needed this surgery and couldn’t go to your own hospital, where would you go?

The name that kept coming up was Dr. David Bartlett in Pittsburgh. He had been performing this operation since the early 1990s.

Steve made up his mind. The surgery was set for Feb. 19.

The night before the surgery, Steve sat with Joe, Zita, and three of his kids in the hotel bar across the street from the University of Pittsburgh Medical Center.

With rounds of Bud Light, they toasted a successful surgery. His daughter Katie, a bubbly 26-year old who works in insurance, looked at her dad. Usually, he was something of a ham, telling stories, repeating punch lines, and banging the table for emphasis. Now, he was holding a cup of Jell-O, half eating it, half jiggling it around with his spoon.

He was due at the hospital at 5 a.m.

“You excited, Dad?”

“That’s not exactly the right adjective,” he said, shaking his head.

Eleven hours later, he was anesthetized, his torso shaved, a band placed across his forehead to monitor his brain activity.

Bartlett stood over him, inserting a camera into a little incision in his upper left abdomen. A second later, the inside of Phillips’s belly appeared on two screens.

Pop music was pulsing in the background.

“That white plaque, that looks like tumor,” Bartlett said.

If there were too many tumors, Bartlett would have to sew Phillips up and send him home. But what he saw looked manageable.

With a needle-like tool that cuts and burns at the same time, Bartlett began to make a slit in Phillips’s skin, from sternum to groin.

The hole was stretched wide and held in place with what looked like a giant Erector set.

Close to 9 a.m., Bartlett began to cut away the tumors. He started with a yellowish fold of fat called the omentum, covering the abdominal organs. He could feel that it was studded with tumors.

He took another burning-and-cutting instrument that looked like a barbecue lighter. It made a little click as it clamped down over bits of fat. A few clicks later, the omentum was just a bloody lump of flesh in a blue container.

Then he moved on to the intestines, which glistened like a string of raw bratwurst.

“With these small tumor nodules, they can hide in this stuff very easily,” said Bartlett. He began to cut with the needle-like tool again. The flesh sizzled and smoked.

The lower down on the intestine Bartlett’s fingers went, the more tumors he found. “We’re going to take out some of that intestine. . .” he said.

Bartlett snipped tumors out of the peritoneum and off the surface of the spleen. He sliced the gallbladder out completely.

The cutting lasted hours.

The Black Eyed Peas came on the stereo. Then the Beatles. Simon and Garfunkel. Adele.

The operating room filled with the sour smell of disinfectant and singed flesh. Bloodied surgical sponges were scooped out of Phillips’s belly and handed over to a nurse, who kept careful count so that none would be left inside.

At 1:30 p.m., 5½ hours after the operation had begun, Bartlett straightened. It was almost time for the chemo.

But first, he took an enormous measuring cup of water and poured it straight into Phillips’s opened-up belly.

Bartlett explained: “For cancer cells that are floating, water does more than the chemo.”

The water was suctioned out, and then what looked like two clear garden hoses were stuck into Phillips’s belly, pumping him full of heated chemo. A resident stood there, using her whole upper body to rock Phillips back and forth, making sure that the poison got into every last crevice of his abdomen.

She and the surgical fellows took turns rocking Phillips for 100 minutes.

At 3:15 p.m., seven hours after Phillips was wheeled into surgery, and just before the team was about to close him up, Bartlett made one final pass through his patient’s belly.

He paused. His gloved fingers moved over the same spot again and again. He’d found another tumor, a hard white lump nestled into the pink flesh of Phillips’s intestine. Somehow, he had missed it before.

“That’s just the nature of these tiny little dots,” he said.

He burned it off with a sizzle of smoke.

Bartlett checked the blood flow along Phillips’s intestinal tract, poured in a bit more water to wash out any leftover chemo. And then, with sutures and staples, the team closed Phillips up and wheeled him to the ICU.

Not long after his surgery, Phillips was back in the ICU — and then back in the operating room. He had an infection that led to pneumonia, and a leakage in his intestinal tract that needed to be surgically repaired. He was finally discharged a month after his surgery, and is now in recovery.

Eric Boodman can be reached at eric.boodman@statnews.com. Follow him on Twitter @ericboodman. Follow Stat on Twitter @statnews.