When 16-year-old Rebecca DeMoss began complaining of headaches last year, her mother, Angie, thought it was because the Tahlequah High School sophomore wasn’t wearing her glasses.
“Back in July – even before that – she was complaining about having headaches, and complaining about her vision,” said Angie. “It just didn’t make much sense. I assumed she just wasn’t wearing her glasses, but the headaches were happening every day, not just when she wasn’t wearing them.”
Rebecca, then 15, was taken to an optometrist for a vision field test, a method used to measure the entire scope of vision. The patient is required to understand instructions, cooperate with testers and provide useful feedback. Rebecca was able to do that.
“[The doctor] was telling me what a good job Rebecca was doing telling her what was wrong,” said Angie. “She didn’t pass the test. It was really bad.”
The optometrist recommended Rebecca have an MRI.
“She said it could be a variety of things,” said Angie. “She said, ‘I’m a mother. I’m not going to tell you what the worst-case scenario could be.’”
Later, Rebecca had the MRI at Tahlequah City Hospital, and they were told the results would be sent to a doctor for examination. They went to a nearby restaurant for lunch, and Angie’s phone rang.
“So I knew that wasn’t a good sign,” said Angie. “The doctor wanted us to come in and see him later that day. Not tomorrow or next week, but that day.”
The diagnosis, and a new technique
The family went to the hospital, where a doctor outlined some findings. Rebecca was referred to a doctor in Tulsa, who also recommended an endocrinologist. In the process, Rebecca learned she had a craniopharyngioma.
“It’s a benign tumor that grows on or near the pituitary gland [at the base of the brain],” said Angie.
The family was connected with a doctor at St. Jude’s Children’s Hospital in September, who contacted them about flying out for a consultation on his study.
“It was a slow-growing tumor,” said Rebecca. “They said if the [first surgery] didn’t get it all, there was a possibility it could grow back. The doctor said a lot of people have it, but it doesn’t grow.”
Doctors told Rebecca and her family that after birth, embryonic stem cells didn’t end up in the right place, which caused the craniopharyngioma.
“We knew we were going to need a major surgery to remove what they could of the tumor,” said Angie. “It was sort of like two separate tumors. One was next to the pituitary gland, and what they couldn’t get was attached to the brain stem.”
As part of the doctor’s study at St. Jude, Rebecca needed to undergo proton therapy to remove what the first surgery could not. Angie had never heard of the treatment, and believes other families may not know of it, either.
Proton therapy treatment isn’t available just anywhere; there are about two dozen centers in the world. Oklahoma City is home to ProCure Proton Therapy Center, the only center in the state.
Rebecca and her family rented an apartment in Oklahoma City, and she began proton treatment Nov. 28. They received financial assistance from the ProCure Cancer Foundation, and monetary donations for non-medical expenses, like housing and transportation costs incurred because of the commute from Tahlequah to Oklahoma City, according to Jessica Young.
“Proton therapy is an advanced form of radiation cancer treatment that precisely targets tumors,” said Young, a spokeswoman for ProCure Proton Therapy Center. “It allows for extreme precision and dramatically reduces the damage to healthy tissue so patients experience fewer short- and long-term side effects than with standard x-ray radiation.”
Treatment destroys cancer cells by preventing them from dividing and growing, much like standard x-ray radiation, but proton therapy causes less damage to healthy tissue.
“This is because protons release more of their cancer-destroying energy directly in the tumor and less in surrounding healthy tissue,” according to the site. “This is an important benefit, particularly when tumors are located near critical organs or structures, such as the brain, heart or spinal cord.”
So far, the prognosis looks good
Rebecca went through one proton therapy treatment every day, Monday through Friday, for 28 treatments. There was no pain or discomfort during the non-invasive process, just a requirement to wear a mask during the treatment and remain still.
“The treatment just took a couple of minutes,” said Rebecca. “But they had to position me on the table, and so the process took like 30 minutes.”
The only side effect was the loss of hair in a small spot on her head, where the radiation treatment had targeted.
The process uses a fixed-energy cyclotron in what is called the gantry treatment room at ProCure Proton Therapy Center, allowing for a 360-degree rotation of the proton beam around the patient. Other patients may be treated with inclined- or fixed-beam technology, depending on the diagnosis and tumor location.
Rebecca finished her treatment Dec. 31, 2010.
“Now we’re getting weekly MRIs, and we’re going back to Memphis next month for a followup,” said Angie. “Then, every three months, we’ll have followups. It’ll be like a lifelong process.”
At this point, everything looks good, said Rebecca.
Angie and Rebecca both say the process, though unexpected and unwelcome, was easier to navigate because of the response of staff from hospitals and treatment centers involved.
“It really hasn’t been a nightmare,” said Angie. “The hospitality made us feel right at home. We weren’t just another number. They would just go out of their way, and they don’t talk down to you.”
About proton therapy
According to the medical directors and doctors with ProCure, proton therapy can be especially beneficial to children, because their bodies are more vulnerable to the side effects of radiation treatment.
ProCure’s website indicates clinical studies show proton therapy reduces the risk of growth and developmental problems and of tumors occurring later in a child’s life.
Other benefits include reduced incidence of secondary tumors resulting from radiation treatment; the ability to use proton therapy with other treatments, like chemotherapy; the potential for an increase in tumor control due to a more effective radiation dose to the tumor; and the ability to treat recurrences of cancer patients.
Proton therapy is reportedly effective in treating cancerous and non-cancerous tumors and arteriovenous malformations, including brain tumors, head and neck tumors, base-of-skull tumors, prostate cancer, pediatric tumors, tumors near the spine, melanoma of the eye, and lung tumors.
Depending on a patient’s diagnosis, treatments are usually given five days a week for four to eight weeks. According to ProCure, proton therapy is, in most cases, covered by insurance, and can be more expensive than standard x-ray radiation.
For more information, visitwww.procure.com/ok.