Proton beam therapy appears to be dad's last chance to beat recurring tumor

BONDVILLE — It's been 24 years since the benign, aggressive tumor giving Randy Davis constant headaches first appeared.

Surgery and radiation beat this tumor twice, but early in 2011 Davis' intense headaches returned. And his vision grew so blurred he could barely see.

For a third time, the 37-year-old Bondville dad learned the brain tumor of his adolescence had made a comeback. But this time, doctors didn't have hopeful news for him.

The tumor was inoperable, and he'd already had all the radiation he could withstand, he said.

Then Davis' mother heard about another option, and his doctors at Carle advised him to give it a try.

Davis made the trip to suburban Chicago this past spring, becoming the 398th patient to complete proton beam therapy at a proton therapy center that opened in Warrenville in 2010.

Proton therapy is a different kind of radiation. It uses a beam of protons, which are particles with a positive charge, instead of X-rays, to kill cancer cells and other tumors.

Davis' mother, Marilyn Harrison, recalls talking to some of Randy's fellow patients while he was undergoing proton treatments. Some of them told her they'd canceled other treatments to try proton therapy.

But for Randy, she said, there were no other choices.

"This was his chance," she said.

How it works

Both standard X-rays used in standard radiation and proton radiation destroy tumor cells and keep them from growing and dividing.

Davis was able to undergo proton therapy after doctors ruled out standard radiation because proton radiation delivers a sharp beam to the tumor with minimal damage to surrounding tissue, says his Carle neurosurgeon, Dr. John Wang.

"Proton beam is the only option for him," Wang said. "Most people getting proton beam are not people with options."

Proton and X-ray radiation differ in the way each delivers energy in healthy tissue, according to the National Cancer Institute. X-rays deliver energy on their path to the tumor and on their way out of the body, also destroying healthy tissue on both sides, while proton beams deliver most of their energy at the end of their path, delivering less energy along the way. They deliver a burst of energy in the tumor, then come to a stop.

"When the accelerated proton goes into the body, it will stop at a certain distance, and we can customize how it goes into the body," said Dr. John Chang, Davis' radiation oncologist at the CDH Proton Center, a ProCure center, in Warrenville. "There's a little bit of energy in front of the target. Most of it goes in the target, and none goes out the other side."

Along with sparing more healthy tissue, the treatment comes with fewer side effects, Chang said.

Wang contends proton therapy is suited to a select group of patients, and Davis fit that group.

"Typically you've been evaluated for all options, and proton beam is your only option," he said.

In a published report in April, the American Society for Radiation Oncology concluded there is reason to be optimistic about proton therapy, but still insufficient evidence to recommend it outside clinical trials for many types of cancer.

Proton therapy providers, however, are building for growth.

While the proton treatment center in Warrenville is one of just 10 such centers in the U.S., a half-dozen more are under construction and several more are under development.

The ProCure center in Warrenville projects the potential need for proton therapy exceeds its full capacity of 1,500 patients: Some 60 percent of people with cancer in Illinois will undergo radiation during their treatment, or 39,000 patients per year, and 11,000 of them could benefit from proton therapy, ProCure contends.

High cost

The first hospital-based proton beam treatment facility opened in 1990 at California's Loma Linda University Medical Center, and until a decade ago, there were only two treatment centers in the U.S., says Dr. Bill Hartsell, medical director at the ProCure center in Warrenville.

Access to proton therapy has been limited to location, and more treatment centers have been slow to develop due to the high cost of building them, he says.

"Even a lottery winner would have trouble opening a proton center," Hartsell said.

ProCure's center in Warrenville cost about $135 million, but treatment facilities generally run $150 million to $200 million, with a large portion of the expense — about $50 million — consumed by the cyclotron that accelerates the protons, he said.

The treatments are also on the pricey side, compared with standard radiation.

Chang said proton treatments generally run about 50 to 60 percent more than standard radiation — though, because they tend to come with fewer side effects, patients can save money in the long run with fewer doctor visits, diagnostics and medications.

Hartsell says proton therapy can be a first treatment option for appropriate patients, but it's not for everybody.

"There are still a lot of things that it makes sense to use standard treatments for," he said.

Proton therapy is currently used to treat tumors of the brain, spine, lung, esophagus, liver, pancreas and prostate, bone and muscle cancers and lymphoma, Chang said.

The ProCure center has also treated children (who can be especially sensitive to the effects of standard radiation) with lymphoma and tumors of the muscle, brain and kidney, Hartsell said.

"About 15 to 20 percent of the patients we treat are children, and that's where you see the big benefit," he added.

About 70 percent of the Warrenville center's patients come from the 60- to 70-mile Chicago vicinity. The rest have traveled for treatment from as far away as 21 states and five foreign countries. And it's not easy for those traveling patients, Hartsell said.

"I certainly don't see a problem in having twice as many proton centers as we have now," he said.

Waiting

Davis and his family will get their first indication of how effective his proton treatments were when he has an MRI in mid-July.

His original tumor, called a craniopharyngioma, is a benign tumor that develops near the pituitary gland and acts malignant, according to Wang. It tends to grow in the center of the brain, in a site at risk for repeated surgery and doesn't spread. But it does tend to keep coming back.

In Davis, it did more than cause headaches. It also shut down his pituitary gland function when he was a young teen, requiring him to take hormone replacements, his mother said.

Davis, who has a 6-year-old son, was working as a truck driver and living in Florida when the tumor recurred in March 2011.

While his headaches had never entirely left him, he was low on energy and the pain had become so severe, "I was eating Excedrin like Tic Tacs," he said.

He'd gone for an eye exam, and the largest letter on the eye chart he could read was the big "E" on top. The eye doctor sent him to a hospital emergency room for an MRI immediately, he said.

An emergency surgery was done in Florida to remove some of the tumor to keep him from going blind, he said.

But Wang said the tumor is clinging to structures that make further surgery out of the question.

Davis had proton therapy from Feb. 5 to March 23, and while he is waiting to see what the MRI indicates, he knows his vision has already improved, and Wang and Chang say the tumor is shrinking.

A patient's best shot with proton therapy is the first round of treatments, but one round is generally all it takes, Chang and Hartsell said.

"We gave him a sufficient dose to knock this tumor out," Chang said.

The first two years after proton therapy are critical, but it takes about five years to know if the tumor is stable and won't grow back, Chang said.

Harrison says her son has always had a great attitude, and she's hopeful.

When he was younger, she remembers, "We'd take 5 minutes now and then to rant and rave and complain and then say, 'OK, time's up.'"

Proton therapy resources

 

There are 10 proton therapy treatment centers in the U.S., a half-dozen more under construction and several others under development.

Existing centers

  •  Loma Linda University Proton Therapy Center, Loma Linda, Calif.
  •  Francis H. Burr Proton Therapy Center at Massachusetts General Hospital, Boston.
  •  IU Health Proton Therapy Center, Bloomington, Ind.
  •  University of Texas M.D. Anderson Cancer Center Proton Therapy Center, Houston.
  •  University of Florida Proton Therapy Institute, Jacksonville.
  •  Procure Proton Therapy Center, Oklahoma City.
  •  University of Pennsylvania Roberts Proton Therapy Center, Philadelphia.
  •  CDH Proton Center, a ProCure center, Warrenville, Ill.
  •  ProCure Proton Therapy Center, Somerset, N.J.

Under construction

Proton centers are under construction in San Diego; Seattle; Flint, Mich.; St. Louis; Knoxville, Tenn.; Rochester, Minn.; and Phoenix.

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