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June 11, 2004

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Publication Date: Friday, June 11, 2004

Getting a second opinion -- your own Getting a second opinion -- your own (June 11, 2004)

Patients can do their own research at new cancer center

By Diana Reynolds Roome

There was a time when the doctor knew best for the patient, and there the discussion ended. Now, doctors are recognizing that their patients' ability and desire to get actively involved in their own treatment are a critical part of the healing process.

The new Stanford Cancer Center is built around this principle. Everything about it expresses not only respect and care for patients but also invites them to play a part in their own treatment and recovery. Its many facilities are a direct encouragement to the patient to learn, make choices and take charge of their own well-being.

In medical prowess and technology, Stanford has long been recognized as a leader. Its clinical trials department offers patients opportunities to take part in experimental therapies (more than 200 are currently underway). The center also has one of the first digital mammography and imaging units, a stereotactic breast biopsy device, a PET/CT scan (the only one in Northern California), a medical linear accelerator (with more to come), and the cyberknife, a highly focused radiation treatment tool.

Clearly patients are not expected to understand the detailed workings of such machines or the medical complexities of their disease or its treatment. But there's a lot they can find out, much of which might directly affect their own and their physician's approach to the disease and the way it is treated. Far from resisting this as an unnecessary interference, the medical staff encourages such participation.

"We help individuals develop new coping skills so they can access information, understand it and make informed choices," said Holly Gautier, concierge and director of patient services, who acts as a medical resource, health care coordinator, and patient advocate. "This is a single-source treatment center where we promote mind, body and spirit."

Messages of support and empowerment are present even in the design of the new building itself. Light, spacious and serene, with colors that are welcoming and warm, it has none of the usual associations with a high-powered specialist clinic. A grand piano in the central foyer denotes the empathic and spiritual aspects of life -- themes that are carried on in the artworks on the walls, the small Zen courtyard and gardens, and the meditation room upstairs. Patients are also shown the cyber-cafe where they can read or use computers to do their own Internet research.

"It was very relaxing to be there," said cancer patient Margaret, who withheld her real name because some of her relatives and co-workers don't know she's sick. She was diagnosed with breast cancer in April after a lump was detected during her annual mammogram. "When I arrived, the concierge pointed me in the right direction. Everything was so open and accessible."

Like all new patients, Margaret was supplied with a binder to help keep track of her progress from pre-arrival to post-care. Because the center offers a multidisciplinary approach, a patient may see several doctors. For example, an oncologist specializing in the area to be treated, a surgical oncologist, a radiation oncologist, and a pathologist. These doctors can meet and pool their expertise more easily here than in a conventional hospital setting, where their offices might be far apart. Also on site are nurses, psychologists, a dietician, a social worker, and insurance counselors.

Margaret came to the Stanford Cancer Center for a second opinion, after she read about a British study that showed the timing of surgery, in relation to the menstrual cycle, could affect long-term survival rates. Surgery had been scheduled at the Palo Alto Medical Clinic for a lumpectomy and removal of sentinel nodes on one side. But Margaret worried that this issue, which might be critical to the outcome, was not being considered in the timing of her surgery.

The physician Margaret consulted at Stanford admitted that this research was not well-accepted, but suggested at once that she go and find out more. Margaret went straight to the center's library (a specialized branch of the Stanford Health Library based at Stanford Shopping Center), where two librarians found her about 30 articles and helped her to narrow those down to the most relevant information.

"They were awesome," said Margaret, "extremely knowledgeable and very customer-service-oriented." If an article is not immediately available, the library can often send it on by the most convenient means. In Margaret's case, she had everything she needed within 24 hours -- all at no cost to her.

"We can go as deeply into the research as a patient wants to take it," said Nora Cain, director of the health library. "When patients receive a new diagnosis, they often come out of that initial meeting stunned, and often retaining far less information than they expect. They still need more details about what their care might involve and what choices they have. This helps them to feel more secure with the decision they make."

Linda, who also withheld her real name, was recently diagnosed with hypoplastic myelodysplasia, a disorder in the bone marrow that disrupts production of red blood cells. She said learning more about her complex disease helped put her in the "driver's seat."

"It's really healthiest ... to make choices rather than have them made for you. It's more empowering to interact with the physician and ask questions that matter to you," Linda said. "The health library research can provoke you to ask questions. Otherwise, the doctor doesn't know at what level you're ready [to receive information], and it won't be tailored to you," she said.

Yet while knowing a lot about their disease is right for some patients, others may not be fully prepared to hear a multiplicity of medical details.

"There is a certain amount of frank heroism in finding out [about your disease]," said Linda, who spent two nights at El Camino Hospital after suffering some shortness of breath and a thumping heart before severe anemia was discovered to be the cause. "Going to the library may not be a walk in the park -- it has psychological dimensions. If you steep yourself in information and don't see your doctor for a month, it can make you very worried. The patient needs to think through how much they really want to hear."

"Negative information that the patient didn't ask for causes anxiety and frustration," said Lawrence Recht, a professor of neurology and neurological sciences, who specializes in brain tumors. "We have to balance patient education and their need to understand options against the risk of creating a sense of hopelessness and despair. But anything that can empower the patient and their family and give them a sense of control helps to ameliorate anxiety."

"Women who participate in decision-making do better," said David Spiegel, director of the Stanford Center on Stress and Health, who pioneered support groups for breast cancer survivors and works closely with the Stanford Cancer Supportive Care Program. This free program is open to current and former cancer patients, their family members and caregivers, and aims to act as a bridge between standard medical care and broader aspects of healing. A yoga class is one example.

Margaret took the article about the critical timing of lumpectomy to her surgeon, who reviewed it carefully and gave her his opinion that it had no real validity.

"He took time to explain to me the pros and cons of waiting -- the downside was the possibility of further [tumor] growth or an invasion of the lymph nodes. He also said that if I would feel better delaying surgery, it was up to me."

In light of his opinion and others, as well as her reading around the subject, Margaret ignored the article and stuck to her original surgery date.

"In the end, my decision was, I've got to get this cancer out of my body as soon as possible. But the article gave me something to discuss with my surgeon. I was very comfortable with my decision, and still am today."


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