St. Charles woman uses proton therapy to beat tumor

Heaven Alcorn's father died in 2008 from stomach cancer. So when her gynecologist discovered a tumor the size of a cantaloupe in her abdomen three years later, fear washed over the 33-year-old St. Charles woman in a mix of anxiety and regret.

“It was a big panic,” Alcorn said. “The whole family, we were devastated. I freaked out.”

It wasn't just facing her mortality that occupied her thoughts. It was the fact she was nine months late in getting her regular checkup.

Alcorn works in a doctor's office in Bartlett. She knew better. But life was busy for the mother of three. The days on the calendar slipped by without much notice.

She didn't feel sick.

She didn't even know the tumor was there. It wasn't until her doctor actually felt around her abdomen that something seemed amiss.

“She said, 'I don't know what's going on here. Let's do an ultrasound,'” Alcorn recalled of the conversation with her doctor.

“They could see immediately that there was something there,” Alcorn said. “My doctor said, 'I don't know what this is, but it's big.'”

Big enough that Alcorn was sent to a surgeon the very next day after her CT scan. The biopsy brought both relief and a new puzzle.

What it was

Alcorn had a desmoid tumor.

The good news was she didn't have cancer.

The bad news was the tumor was aggressively growing, essentially acting like cancer.

The growth, if unchecked, would eventually cause dysfunction in the organs surrounding it.

The surgery would be drastic.

Doctors removed Alcorn's entire lower abdominal muscle from one hip to the other. A plastic mesh replaced it to keep her organs in place.

In the best-case scenario, that would've been the end of Alcorn's ordeal. It wasn't.

Tests showed there were still some remaining cells from the tumor at the margins of the tissue surgeons had removed. The chances of another tumor growing were about 70 percent.

“That's pretty high,” Alcorn said. “And I didn't want to have to go through a surgery like this ever again. It was brutal.”

With cancer, the next step would've been X-ray radiation to burn out the remaining problematic cells. But X-rays don't discriminate in what they destroy. They travel all the way from the front of the body, out the backside, impacting every tissue and organ they touch.

For Alcorn, that meant having radiation that would impact her reproductive organs, her colon and her bladder. The treatment could do as much harm as good.

“But that 70 percent was like a big, old neon sign flashing in my head,” Alcorn said. “It's coming back.”

So her medical team came up with a different option, one that Alcorn, despite her medical background, had never heard of before.

It was time for a visit to the Proton Center at Central DuPage Hospital in Warrenville. It's one of only 10 proton therapy centers in the entire country.

How therapy works

Protons are charged particles, a hydrogen atom that's lost an electron. And doctors like William Hartsell have found they are uniquely adept at providing very focused radiation therapy.

“They give off a little bit of energy on the way in,” said Hartsell, who is medical director of the center. “Then, at the treatment area, most of the energy is released. Then none of it goes beyond the treatment area. It stops. It's kind of like a bottle rocket. It goes a certain distance, pops, and then it's done.”

Proton therapy has been a recognized treatment option since the late 80s. But only now is the research taking off.

Hartsell said he expects proton therapy to become more popular with several types of tumors.

“I don't know if it will ever become the more common kind of radiation therapy,” Hartsell said. “But it will be a much more commonly used treatment. The big advantage is fewer side effects.”

For now, the treatment center sees mostly children and people with brain tumors or prostate cancer.

Hartsell said the treatment isn't more well known because there just aren't that many treatment centers offering the therapy. And the reason for that is because the facilities are very expensive to build.

“You can't just plop one down at the corner of a hospital,” Hartsell said. “The treatment area is the size of a football field with walls 8 to 14 feet thick.”

Smaller facilities are just now developing, which may see the treatment proliferate a bit more, Hartsell said. Once word spreads about the advantages to proton therapy, Hartsell said more conditions will be more commonly treated with protons.

“Because the therapy is more focused, you get a better quality of life and a faster return to normalcy,” he said.

After treatment

Some sense of normalcy is exactly what Heaven Alcorn was trying to maintain for her family.

After meeting with the doctors, she decided the downside of proton therapy was worth the benefit.

If she did a full 28 sessions, her risk of having another tumor would drop to 30 percent. So for 28 days in a row, with just a couple breaks for the holidays, Alcorn went to work in the morning then to her 45-minute proton therapy session in the afternoon.

“I was OK,” she said. “I was tired, but I was still able to go to work. It didn't take me out of commission completely.”

The only major discomfort were the skin burns that were part of the therapy.

As the radiation doses increased, her efforts to combat the skin burns with cream and gels didn't always work.

“I'd compare it to the worst sunburn you could ever have in your life,” Alcorn said. “My skin was fire engine red, then it would blister. That was the worst part.”

In her first tests since the end of the therapy, Alcorn has a clean bill of health. But she also has a regular schedule of follow-up appointments to make sure it stays that way.

She's learned her lesson. No more missing her regular doctor appointments.

“I'm doing them by the book now,” Alcorn said. “The tumor should've never got as big as it did. It was something that was very aggressively growing. I've definitely started telling everyone not to be late for their gynecologist visits. It's a big relief to know it's over, and it wasn't cancer. But just like cancer I can't assume it's never coming back. But I know I did the right thing with the proton therapy. If the tumor comes back, I would do the therapy again in a heartbeat.”