In the fight of her

life

Mother with cancer faced battle for treatment

Tina LeDuc, a single mother of four in Columbia Falls, blinks back tears recalling the five dollar bill she received tucked in one of her flyers.

It was signed "someone who cares."

"I could tell by the writing it was probably from an old lady," she said.

For weeks, it seemed a stranger cared more whether LeDuc, 35, lived or died from a rare form of cancer than some local dentists and the University of Washington Medical Center.

After an emotional roller coaster of phone calls, she got the dental work she needed prior to radiation from a compassionate dentist in Troy. Following an inquiry from the Daily Inter Lake, she received a long-awaited approval for specialized neutron radiation at the UW Medical Center.

But LeDuc's gut-wrenching experience provides a cautionary tale for others seeking treatment with no insurance or Medicaid.

Her journey through the medical maze began at the end of May, though LeDuc said she felt the first symptom, a little knot on her neck, months earlier. With a job with no medical insurance, she chose to ignore it.

But things took a dire turn one morning in late May.

"I woke up and my ear was numb," she said. "So I went to the ER in Whitefish."

Even with no insurance, LeDuc had no problem getting service at North Valley Hospital where an ultrasound revealed a growth on her neck. She said she could tell from the high level of concern expressed that the image showed something drastic was wrong.

Still with no insurance or Medicaid at this point, LeDuc immediately got a consultation with eye, ear, nose and throat specialist Dr. Karl Oehrtman, who diagnosed the growth as a large tumor. He quickly scheduled LeDuc for surgery and removed part of the tumor on June 25 at Kalispell Regional Medical Center.

Even before receiving the pathology report from the tumor, Oehrtman suspected bad news.

"He told me to be prepared for the worst," she recalled.

The pathology report confirmed his fears. She had adenoid cystic carcinoma, a rare form of cancer in her salivary glands. LeDuc said that no one knows what causes this cancer that crops up without known ties to lifestyle or heredity.

"It's like a lightning strike," she said.

Luckily, it seemed, LeDuc's income was low enough that she was able to qualify for Montana Medicaid to pay for treatment.

A knee (ACL) injury incurred last December on her job with a cleaning company had put her on disability for several months. LeDuc had just been released for light duty and was working a few hours a week when the cancer diagnosis turned her life upside down.

With her medical treatment still based in Kalispell, LeDuc continued receiving care with Medicaid payments without problems. She had a costly P.E.T. scan through Kalispell Regional Medical Center and received an appointment with oncologist Dr. John Ward.

She was also set up for radiation in Kalispell at The Cancer Center. But before the therapy, LeDuc was told she needed to have any dental decay removed.

"My teeth had to be completely fixed or they would turn to mush," she said. "So I called about 45 dentists in the phone book. None of them would accept Medicaid."

According to LeDuc, she told each office that her life depended on getting the dental work. Yet none would agree to help her because Montana Medicaid paid too little.

"I was bawling when I called," LeDuc said.

Her mother reached out as far as Troy where she found dentist Steven Mendive. He accepts patients with Medicaid and agreed to treat her immediately.

During the same period, LeDuc had her consultation with Ward, her oncologist, who confirmed the rarity of her diagnosis of cancer in her salivary glands.

"He said he hadn't seen a case of adenoid cystic carcinoma in 30 years of practice," she said.

After research, Ward advised her that her tumor required neutron radiation, a highly specialized, powerful therapy available at just two locations in the country. He referred her to the top treatment center located at the University of Washington Medical Center in Seattle.

At first, it seemed the system was working to get LeDuc the life-saving treatment she needed.

When she contacted the UW medical center, her patient representative told her the medical center had "a good relationship" with Montana. She received a series of early August appointments.

But then LeDuc had a bureaucratic bomb dropped when the patient representative she knew only as Jason told her not to plan to travel yet. He said that the hospital's contracting office was "negotiating" with Montana Medicaid.

"I said 'What - you guys are negotiating a price on my life?'" LeDuc said. "He said 'Pretty much. Montana doesn't want to pay what we want.'"

LeDuc had only praise for her representative at Montana Medicaid, Mary Patrick, who stayed in touch with her on a daily basis. She explained that this was the first time anyone from Montana had needed this treatment.

"She worked with me so hard," LeDuc said.

But Patrick could not get an outright approval to give LeDuc the green light to pack her bags and drive to Washington.

As days dragged by, LeDuc's stress level went through the roof at a time when her oncologist had advised her stress would worsen her condition. She began to lose all hope as days dragged by with no reprieve.

"I thought I was doomed for death," she said. "As far as I knew, they [UW] were the only ones that could do it. I thought, 'I don't understand it but it must be my time to die.'"

Everyone in Montana who was involved in the case was amazed that this was happening.

Her Medicaid representative said it was a first. Ward, her oncologist, told LeDuc it was unbelievable that they wouldn't accept Montana Medicaid.

"He told me this is urgent. This cancer is fatal," LeDuc said. "He said he would do all he could to get me in."

Her friends and family began calling every government official they could think of and began writing letters to the Daily Inter Lake. Yet, her UW patient representative continued to tell her that the medical center's contracting office had not yet approved her treatment.

All the while, LeDuc knew that she faced an uphill battle even with timely treatment. She said about 40 percent of patients survive five years after surgery and radiation.

As every avenue of help turned into a dead end, LeDuc hit the panic button. Unable to sleep, she said she was searching online at 4 a.m. when she found the Institute for Neutron Therapy at Fermilab, a clinic associated with Northern Illinois University.

Even though she couldn't afford to travel that far, LeDuc asked Medicaid officials to see whether Fermilab would accept Medicaid. Her representative immediately contacted the facility and set up an appointment for Aug. 26.

But research on the Internet on the University of Washington Medical Center's own Web site raised disturbing questions about opting for a much more costly trip to the facility in Chicago.

Oncologist Dr. George Laramore, an expert in treating adenoid cystic carcinoma, said on his Web page that the Fermilab facility was "the least sophisticated" of neutron facilities, "having only a fixed horizontal beam and a set of fixed collimators for shaping the neutron beam."

In contrast, the University of Washington's equipment uses beam optics and a rotating gantry to direct the proton beam to the targeted tumor. It also has a computer-controlled collimator to shape the beam precisely to the tumor, sparing healthy tissue.

"This facility has the greatest experience in treating salivary gland tumors," Laramore's Web site states.

For the family, sending LeDuc much farther to Chicago posed an even steeper hill to climb logistically and financially. They remain several thousand dollars short of the amount needed to go to Seattle for treatment and a series of follow-up visits.

Her father and mother said they were incredulous throughout the fight first for dental care and then the battle for life-saving neutron radiation treatment.

Cheryl Porter, her mother, said she thought at first that LeDuc hadn't understood. She thought her daughter was too emotional to understand what the UW medical center was telling her.

"But they told me the same thing," she said.

Her father said he felt that the University of Washington Medical Center was acting as judge and jury, deciding between life and death for his daughter.

"She's committed no crime other than being ill," he said with emotion breaking his voice. "I've lost all faith in this country."

When the Inter Lake made inquiries to Montana Medicaid, LeDuc's representative Patrick referred the questions to Brent Williams, bureau chief of hospital and clinic services. He confirmed the continuing delays by the University of Washington although he said they did not turn her down.

The holdup was UW's contracting department which was in turn checking with attorneys on some undefined sticking points. Williams was concerned about tarnishing the medical center's normally good relationship with Montana Medicaid.

"The University of Washington is a real critical provider for Montana patients," he said. "This is the first problem we've had."

Williams said Medicaid rates are not negotiated on a patient-by-patient basis. He said Montana's contract precludes the medical center from picking and choosing patients.

But, because of the time element with attorneys involved, he said Patrick set up the Fermilab appointment for LeDuc. He referred the Inter Lake to Arla Mathiason, the contract specialist at UW who was working on LeDuc's case.

When contacted, Mathiason referred the Inter Lake's questions to "the administration." Within a few hours, Tina Mankowsky, associate vice president for medical affairs, called the Inter Lake.

After hearing a summary of LeDuc's story, Mankowsky agreed that the University of Washington Medical Center was her best option for treatment. She was surprised to hear about the Medicaid delays and said she would make inquiries.

Because of privacy laws, Mankowsky said in a voicemail left at the Inter Lake that evening that she could not discuss LeDuc's case. She said only that it was resolved and to contact LeDuc for any other information.

LeDuc reported she had a phone call from the medical center saying that she was approved to come for treatment. Medicaid officials quickly cleared the way and LeDuc began a series of screenings and preparations for neutron radiation during the week of Aug. 11.

Her mother, Cheryl Porter, said that her daughter returns Sept. 2 to start 16 radiation sessions over about five weeks. She has no chemotherapy scheduled because it hasn't proven effective in combating this type of cancer.

Compared to conventional radiation, neutron deposits 20 to 100 times more energy, inflicting more damage on tumor cells. Because adenoid cystic carcinomas often repair themselves from conventional radiation, the neutron type provides the best chance of a cure.

LeDuc most likely will retain a small area of permanent hair loss and some skin discoloration as side effects. However, she and her family remain grateful to have the best treatment available.

LeDuc agreed to participate in a study with other people afflicted with this type of adenoid cystic carcinoma.

"There are only seven in the whole United States," Porter said.

For additional information about LeDuc and her progress, visit her Web site www.tinaleduc.com.

Reporter Candace Chase may be reached at 758-4436 or by e-mail at cchase@dailyinterlake.com.