RESEARCH FOR YOUR LIFE : Investigating your own health care

RESEARCH FOR YOUR LIFE : Investigating your own health care

by Katherine Eban Finkelstein

…many sick people consider research the only way to keep tabs on the doctors they don’t trust to tell them about treatments their HMOs might not cover.

Ihad only nine-tenths of a centimeter tumor. All my lymph nodes were clear,” Myra Finklestein whispers conspiratorially. “I had a good prognosis.” She almost laughs as she recalls her initial diagnosis of stage-one breast cancer. Then she learned that her stage-one cancer had unexpectedly progressed to stage-four metastatic disease, with a median survival time of about a year.

Now, the 48-year-old chiropractor hunches over a long mahogany table in the library at the New York Academy of Medicine, poring over the Principles of Oncology. The library, the only medical research facility in Manhattan open to the public, attracts thorough physicians as well as cure-seeking patients like Myra. “I spent a long time with Myra,” recalls Maria Theodoulou, M.D., the oncologist who broke the news. “You try to cushion it, but most people feel like, ‘It’s time to buy the plot.’ All they’re seeing in front of them is that white light.”

Myra’s disenchantment with doctors began after her lumpectomy and radiation, when she hand-picked a prominent chief of surgical oncology at a leading Manhattan teaching hospital to guide her follow-up care

Myra joined a growing generation of medical sleuths, patients who consider research an essential survival tactic. According to a 1994 Lou Harris poll, almost half of all on-line searches are made by consumers seeking medical information. Managed care, in part, has inspired this research boom. “As time with physicians gets squeezed, patients want more information,” says Kathy Gardner, a public affairs specialist at the National Library of Medicine near Washington, D.C. Worse, many sick people consider research the only way to keep tabs on the doctors who they don’t trust to tell them about treatments their HMOs might not cover. In an all-consuming research project to save her own life, Myra combed through library archives and Internet communiques; she canvassed networks of patients and support groups for information.

She consulted a nutritionist, who persuaded her to swear off dairy and begin taking alternative supplements: essiac, coenzyme Q-10, shark cartilage, algae, cat’s claw, and calamo, to name a few. For $300, she bought a personalized twenty-page report from CANHELP, a research service in Port Ludlow, Washington, (tel: 360-437-9384) that provides cancer patients with detailed information about up-to-the-minute treatments. She conferred with a woman on Long Island whose struggle to get a bone marrow transplant had been described in a daily paper. She contacted a clinic in Japan that makes vaccines from patients’ urine. Her mother arrived from Florida to help, moving into a nearby hotel. Her sister, Rita, an assistant principal in Queens, became her de facto mediator with the medical community.

Four months after the diagnosis, Rita snagged a flier from a doctor’s desk for a populist health seminar at a midtown hotel, sponsored by the Foundation for Alternative Medical Education. She arrived to find lines around the block, and people scalping tickets for $400 apiece. “My sister has cancer. I need to be in there!” she pleaded. Finally, she stumbled across an old high-school friend, who sold her two tickets at $40 each. Inside, the auditorium was half empty, as many of those who had pre-purchased tickets didn’t show up. “You feel desperate for information,” said Rita. “You’ll pay anything.”

As Myra now explains her strategy, “It’s naive to believe there’s only one way of treating this disease. There’s a lot of information out there. It’s like buying a couch; you go from store to store.” But is Myra right? Is shopping for a cure the same as shopping for furniture? Could she sample an array of alternative and conventional cures without one interfering with the other? Could she keep all her options open and still make headway against what she has been told is probably a fatal disease?

Although Myra liked Dr. Theodoulou, she stopped discussing extra-curricular treatments with her. “No physician talks straight,” she insists. Her research project took on the quality of a covert operation. Indeed, without Theodoulou’s knowledge, Myra and I were on a plane three days after we met, headed for Tijuana, Mexico, to research alternative cancer clinics.

The Tijuana clinics dotting the U.S.-Mexico border across from San Diego were established in the 1950s to provide non-toxic alternatives to standard chemotherapy and radiation. Since then, the original two clinics have burgeoned into 18, all of which purport to somehow bolster the immune system or purge the body of contaminants. The remedies, while unproven, unregulated by the Food and Drug Administration, and denounced as quackery by the medical establishment, draw an intrepid minority among America’s 1.38 million new cancer patients.

Once we land in San Diego, our destination is the International Motor Lodge, squeezed between a Denny’s with menus in Spanish and a Mobil gas station. Behind the check-in counter are books for sale with titles like You Don’t Have to Die. A sign explains that the lodge provides a courtesy shuttle bus to take patients clinic-hopping.

In the morning, sick-looking people are everywhere, many of them in wheelchairs. As they queue for the shuttle bus, Myra emerges from her room looking incongruously healthy and hip: black blouse, black skirt, large hoop earrings, metallic sunglasses. As usual, her face is impeccably made-up, and she wears a shoulder-length wig to cover the effects of chemotherapy. “I’m too young for this disease,” she says quietly.

In downtown Tijuana, we are ushered into the hot, airless office of Dr. Eladio Medina Ibnez, who greets us effusively, then begins a two-hour disquisition. “I microwaved patients with radiation, fried patients with chemo,” he says as though regretting a criminal past. Without a pause, and in his rapid broken English, he moves on to white blood cells, which are lacking in cancer patients who received chemotherapy; to rogue, free-radical molecules, which need to be squelched; to possible cures that he calls “catalyte correctors.”

“What’s your feeling about shark cartilage?” Myra asks, interrupting the flow.

“Good!” he exclaims, but then lectures us about the impurities that lurk in various supplement warehouses and packaging plants.

“He knows a lot,” Myra murmurs. After he proposes that she get her blood and urine analyzed to screen for toxins, and start a regimen of intravenous Vitamin C and other supplements, Myra makes an appointment to return. As we leave he calls after us, “In five months, you are going to be completely healed.”

Outside, Myra turns silent. The momentary enthusiasm in swapping cancer arcana gives way to the grim reality of her prognosis. She is seven months into a 12-month death sentence, and has limited financial resources. (Medina said his cure would cost at least $2,000.)

Our next stop is the Bio-Medical Center, well known in the alternative world for its Hoxsey tonic, named after an American farmer who created a mixture of herbs that cured cancer in his horses. Here, Myra hunts down the center’s director, Mildred Nelson. The wrinkled American nurse looks to be in her late 60s and sits wreathed in a halo of cigarette smoke. She puffs compulsively, as dying patients shuffle past her open office. She invites us to sit down. “I wouldn’t go for that cryosurgery,” Nelson advises, referring to an innovative procedure to freeze and remove tumors from the liver, to which Myra’s cancer had spread; Myra had learned about the treatment from a TV documentary. Instead, Nelson recommends a three-week regimen of tonics.

She doesn’t say a thing about possible side effects or risks of the Hoxsey potions, though their efficacy and safety are far from guaranteed. The inventor’s great grandson, Harry Hoxsey, who founded the Hoxsey Cancer Clinic died from prostate cancer in 1974, after treating himself with the tonics for several years. And the ingredients include the herbs pokeroot and cascara, as well as arsenic sulfide, all of which can be toxic in large quantities.

“How much does it cost?” Myra crosses her arms defensively. “You have more important things to worry about than money,” Nelson oozes. After much prodding, she jots down some numbers: between $15,000 and $20,000 for a three-week vaccine therapy treatment.

“Who can afford that?” Myra asks indignantly.

“What’s more valuable? Your money or your life?”

Outside again, Myra leans against a concrete post in the waning sunlight. “What do you think I should do?” she asks, overwhelmed by the glut of options, all of them expensive and inconclusive, some fraught with risk. I am baffled too, and wonder whether we have arrived at the outer limits of beneficial personal research, and are crossing over into confusion.

Research is Myra’s lifeline, and a seawall protecting her from the enormity of the disease. Yet three days of exhaustive clinic hopping leaves her nowhere closer to deciding which costly regimen holds the key to survival. Her answer is to do yet more research, which seems like a way to avoid decision-making altogether. I wonder, too, whether her medical wanderlust will jeopardize the effectiveness of the treatment she has been receiving at home.

Myra is adamant about staying on in Tijuana. I return to New York to meet with her doctors at the Sloan-Kettering breast center.

Larry Norton, M.D., a trim, tireless man who seems to embody establishment medicine, meets me in his impeccably organized office. From here, he tries to satisfy his patients’ unquenchable thirst for information. Every day, Norton gets almost 100 e-mail messages, 200 phone calls, and six inches of faxes from prospective patients or those seeking advice. His patients also have taken to the Internet, where technical data once guarded by the white-coated elite is available.

The technological stampede kicks up good dialogue and a lot of dust, but also ill-informed, potentially harmful advice. Norton recalls one patient who almost took a toxic dose of a cancer drug called doxorubicin, based on the scuttlebutt from her on-line chat group. “When patients do their own research, their understanding can be different from the facts. Nothing will substitute for expert consultation,” he says.

“But aren’t the experts themselves overwhelmed with infomation?” I ask, thinking of Dr. Theodoulou and the unread two-and-a-half foot pile of published research teetering on her office windowsill. According to the National Library of Medicine’s Gardner, even a doctor who reads two medical journals a night, cover-to-cover, will be 550 years behind in his or her reading within a year.

Norton smiles knowingly: “Just because a patient can get published data doesn’t mean she’s getting the best stuff. All the published literature is two years out of date. Part of my job as an expert is to know what’s out there, published or unpublished. If I had to base my understanding on published data, I’d be an ignoramus.”

Norton explains that, unlike Myra, who had refused a sixth round of chemotherapy recommended by Theodoulou because she was convinced that it weakened her immune system, the vast majority of patients follow Sloan-Kettering’s protocols. “Chemo is the best way to increase cure rates,” Norton says.

So, what is the appropriate balance between blindly following orders and being a medical vigilante?

“Patients should always ask their doctor, ‘How do you know?”And, ‘Because I say so,’ is not an adequate response. As LBJ used to say, ‘Let us reason together.'”

When I describe Myra’s Tijuana venture, Norton launches into a diatribe against untested, alternative remedies. “I tell patients, ‘You wouldn’t get on an airplane if the CEO of the company said he had read an ancient Tibetan text and had a dream of how to build an airplane. So why would you put something in your body, based on that kind of logic?'” But he also doesn’t think patients should discount their intuition when making medical decisions. “I’m an expert in medicine. But each patient is an expert in her own life,” he says.

Myra and her sister have latched onto a pervasive alternative-medicine belief that the medical establishment is deliberately withholding cures in order to profit from costly but ineffective treatments like chemotherapy. At the idea, Dr.Theodoulou exclaims, “My dad’s got cancer and he is probably going to die real soon. If I had the magic in my pocket, wouldn’t I give it to him?”

Myra’s disenchantment with doctors began after her lumpectomy and radiation, when she hand-picked a prominent chief of surgical oncology at a leading Manhattan teaching hospital to guide her follow-up care. The protocol, he said, was routine: a breast exam every six months, a mammogram once a year. “Don’t worry about this anymore. I’ll do the worrying for you,” Myra recalled him saying soothingly. Eighteen months later, the oncologist assured Myra that the growing hardness in her breast was scar tissue from radiation treatment. Only on her urging, she says, did he perform a test that revealed suspicious calcifications. When he recommended a mastectomy, Myra insisted he give her a CAT scan, which led to a liver biopsy. By then, she had scheduled an appointment with Theodoulou for a second opinion.The biopsy indicated that the cancer had spread through her system.

Theodoulou believes that Myra’s anger at her doctor is a misplaced response to her poor prognosis. Her older sister feels a cool, more detached rage. “Someone should have said, ‘This is breast cancer. This can kill you.’ Instead, you have these condescending doctors who tell you everything will be okay. How dare they?”

Shortly after Myra returns from Tijuana, having opted for one day of the Hoxsey tonic and a blood work-up from Medina, she again takes up a panoply of high-tech options. I half-hope she will now choose a single course of action, instead of continuing to wildly pursue one unproven treatment regimen after another, most of which she never finishes. Even Myra has come to realize that treatments are not as interchangeable as couches or love seats. The several rounds of chemotherapy she’d undergone, for example, had disqualified her from a ground-breaking clinical trial for a new vaccine. “They don’t tell you any of this,” she complains bitterly, and goes on with her research.

Myra discovered the radiology department at Long Island’s North Shore Hospital, which operates one of several Positron Emission Tomographers (PETs) in the country. With PET, patients are injected with radioactive dye that collects around any tumor activity in the body. Myra made an appointment for the $1,800 procedure, again without consulting Dr. Theodoulou.

In the week she must wait for the PET-scan results, Myra has another appointment, this time with breast surgeon Dwight De Risi, whose prowess had been trumpeted by CANHELP. Rita, Myra, and I pull up in the parking lot at 7:00 p.m. (De Risi is known for office hours that run as late as 1:00 a.m.) Inside, an indifferent receptionist tells Myra to sit and wait. Two hours later, she is still waiting. “I called to confirm the time of my appointment,” she complains to the receptionist. “The doctor had an unanticipated emergency.”

“I called to confirm. Don’t bullshit me.” Myra pushes her way through the swinging door and confronts the receptionist head on.

“Miss, we are not bullshitting you . . .”

“How can that be when I called ten minutes before coming over here, and you were running on time?” The office clerks are snickering. Rita follows Myra through the door. “My sister has cancer!” “Everyone has cancer here,” the receptionist replies sharply. “Let’s leave. This is what my experience tells me,” Myra blurts. The other patients, waiting quietly, look up from their magazines.

Just then, Dr. De Risi emerges from his office, shepherding a shell-shocked family toward the door. Dark circles are chiseled beneath the otherwise youthful-looking doctor’s eyes. Myra zooms up to him, toting a stack of her medical records. And by 9:40 p.m. Rita and I are shivering in his overly air-conditioned office, as Myra disrobes in the examining room.

“The breast is probably the grayest area in medicine. No doctor wants to put their foot down and say, ‘Do this,'” he explains. I venture the details of our Tijuana trip and am startled by his response. “Chemotherapy is not the answer and everybody knows that,” he says, and explains how it debilitates the immune system. “I’ve seen some pretty remarkable stuff that patients have done for themselves.” Rita clasps her hands anxiously when he leaves the room. Within twenty minutes, he returns, a large smile illuminating his face. He felt no new growths during the manual exam, he says, and new tumors would be palpable. He sees no need for surgery. When Myra enters the room, he says what she’s been waiting to hear: “Keep doing what you’re doing. Do it all.” For Myra, never-ending research and experimentation have been a life-affirming exercise. Her distrust of the medical establishment, her anger, has been an engine keeping her alert and engaged, perhaps even alive.

Recent studies indicate that cancer patients who express emotions like antagonism and rage have better clinical outcomes than patients who behave nicely. In a ground-breaking 1989 study, Stanford University psychiatrist David Spiegel discovered that cancer patients who participated in group psychotherapy sessions doubled their life expectancies.

Based on this research, Roger Dafter, Ph.D., a psychiatrist and associate director of the Mind/Body Medicine Group at UCLA Medical Center, argues that emotions traditionally considered negative actually can have positive biomedical properties. “Because turbulent emotions heat up the system, they can help to counter cancer. In reality, you need emotion to help you survive,” he explains.

Myra bounds over to my apartment with her sheepdog Benjie. She is beaming.The results of her PET scan have come back, and they also look good. No new tumor growth. Dr. Theodoulou’ conclusion? “For all of Myra’s wonderful activism, she’s being treated via the mainstream effectively.”

While Myra is not out of the woods, the spot on her liver has melted away. A small area on the breast, which might be cancer but is more likely scarring from radiation, is visible through ultrasound. She must remain watchful. In truth, it is impossible to know what’s working. Perhaps tomoxofin, or activism, or hope. Or rage. Myra has come over to tell me that she’s decided to spend two weeks at the Janker Cancer Clinic in Bonn, Germany. Today, however, she announces, “I’m taking the day off.”

[Editor’s note: Myra has since abandoned treatment at Sloan-Kettering, and is focusing on two, as yet unaccepted in the U.S., cancer treatments. In Germany she underwent localized chemotherapy, and in this country, she is part of a cancer vaccine research trial.
     Her liver cancer is in recession, she has not had a mastectomy, and the tumor in her breast, she says, is under control. “I learned to be aggressive. Nobody is going to cure you. You have to be the one running the show.” Myra is now two years into a one year death sentence.]

Katherin Eban Finkelstein is a contributing editor for On The Issues and New York magazine, and has written extensively about the politics of health care.