It's the dreaded diagnosis no one wants to hear. Actor Patrick Swayze is the latest public figure waging the fight of his life. He's one of more than 1.4 million people who will be diagnosed with some form of cancer this year.
For patients and their loved ones, initial reactions of shock and fear are only the beginning. "Despite my knowledge of the health care system, it was basically a crisis situation," said Robin Frank, a former hospital administrator whose mother was diagnosed with cancer while in a New York City hospital. "Many of the doctors left much to be desired. There was no compassion, they often appeared rushed and gave few options. I quickly found out that people with cancer must be their own advocates or have someone who will advocate on their behalf."
Bad advice or careless patient skills on the part of doctors and nurses can compound the trauma and damage done by the disease itself, according to Frank and patient advocates.
In addition to coping with an overwhelming diagnosis, patients often face a huge burden in navigating the health care system, says Ann Wax, a registered oncology nurse and patient advocate. However, there are steps they can take to make sure their needs are met and they are armed with enough information to determine their plan of care, she says. It starts with choosing the right doctor.
"It's important for most patients to experience some sense of empowerment and not feel like a victim," Wax says. "They should trust their inner feelings about their physician. Are they able to ask questions and not feel embarrassed by the doctor's response? Does he or she take the time to answer all their questions and not appear rushed?"
Many people are afraid or reluctant to question their health care team. This can lead to poor care, misinformation, and increased problems, according to patient advocates. If a doctor is not meeting their needs, they should find a new one.
Wax recommends people bring a family member or friend to appointments, if possible. This trusted individual can become an advocate, especially if the patient is an older adult. "It's important to have someone else hear what the physician has to say. It's also a good idea to take notes," says Wax.
Dr. David Myssiorek, a professor of otolaryngology in the division of head and neck oncology at New York University Medical Center, says patients should never go to the first appointment alone. "It's the biggest word of advice I can give because when patients hear a diagnosis of cancer, they shut down," he says.
People should almost always seek a second or even third opinion, says Wax. They often face a dizzying array of treatment options. "Nobody should be afraid of insulting their doctor. Good doctors do not feel threatened if patients go for a second opinion," she says.
It's wise for patients to keep a notebook with the names of physicians, appointments and addresses of all health care providers, Wax says. They should write down questions as they occur to them to ask their physician.
Myssiorek takes it a step further. "It's very important for patients to keep an updated file of all their pathology reports, operative reports, a list of all the medications they are taking, and a log of chemotherapy sessions, once they begin treatment," he says.
Once patients decide on their course of treatment, they should try not to have second thoughts, according to Wax. "They must have trust in their physicians and care plan, and not allow family members, friends or other cancer survivors to second-guess their decision."
In addition to medical treatment, patients have a right to services that address their social and emotional needs, Wax says. If health care professionals do not offer it, patients should ask for it. A number of nonprofit groups offer helpful information and support services. One such organization is Cancer Care: www.cancercare.org. The National Coalition for Cancer Survivorship is providing a free audio program on its Web site: www.cancersurvivaltoolbox.org.