[sidebar] But after some tears, calls to family and friends, and more cinnamon buns, the writer and Harvard-trained lawyer came to a stunning realization: It was all about odds. When the doctors said he had 3 months, they meant that a substantial majority of patients with symptoms like his died within 3 months—but not all of them. “I knew that, somehow, I had to find my way into that minority who slipped by the 3-month expiration date,” he remembers thinking. “All I had to do was beat the odds.” Today, thanks to his determination to fight for his life, Smith is living proof that a death sentence isn’t always inevitable. He credits his survival to finding and getting the best medical care possible. He now devotes his energies to helping others uncover the information they need to maximize their chance of beating a scary diagnosis.

Looking for Dr. Right

“After getting my dire prognosis, my partner Steve Naifeh and I decided that we would go anywhere, talk to anyone, read anything, follow any lead, turn any stone in the search for options,” recalls Smith, who, with Naifeh, won the 1991 Pulitzer Prize for their biography of artist Jackson Pollock. “All I cared about was finding doctors who had experience dealing with cases like mine and who could tell me, once and for all, what my options were,” Smith said in Making Miracles Happen, the extraordinary 1997 account he wrote with Naifeh detailing how he “refused to lie down and die on cue.” To their astonishment, there were no resources to help them in their search for the right doctors. “I was in a wilderness without paths,” says Smith, who knew that he needed an oncologist but wasn’t sure what kind. Equally perplexing was deciding whether to talk to a vascular surgeon, a tumor surgeon, or a brain surgeon—or all three. So Smith and Naifeh, both Harvard Law School graduates, decided to use the techniques they’d developed in creating their book series, The Best Lawyers in America. They had compiled their best-lawyer lists by calling thousands of leading attorneys around the US and asking them who they considered tops in their specialty area. So to find “Dr. Right,” they started by calling, and calling, and calling. “Every time this excruciating phone-a-thon turned up a promising name, I was on the phone or on the road, or my brain scans went express mail in my place,” recalls Smith, who sat for hours on a stool in his kitchen in New York City scribbling names and numbers. More from Prevention: Building Dr. Right [pagebreak] “Between the three of us—my voice, my body, and my scans—we covered tens of thousands of miles in just a few weeks: to Australia for an expert in vascular tumors, to Sweden for a radiosurgeon, to Israel for a neurosurgeon.” On top of all that were dozens of domestic destinations. The search led Smith to a neuroradiologist at Columbia-Presbyterian Medical Center in New York City who performed an experimental procedure in March 1987 that shrunk his tumor, reversing Smith’s facial paralysis and restoring what he calls “my old life.” Smith and Naifeh continued their research into finding top physicians and, in 1992, published The Best Doctors in America, a volume that came in very handy when the tumor began to grow again. Using names from their book, Smith located a surgeon at the University of Virginia in Charlottesville who operated on his tumor that same year. Over the ensuing years, Smith has remained fit and largely symptom-free, managing the tumor that he wryly says “continues to pop up in different parts of my head” by tracking down new or experimental treatment options.

Getting Help in Cyberspace

Instead of updating their Best Doctors book, however, Smith and Naifeh decided to take the project into cyberspace to better meet the complex needs of patients searching for medical specialists. In 1997, they founded Best Doctors, Inc., an international doctor-referral company designed to help individuals and groups find their best health care options. Information about a variety of medical conditions is available free of charge on their Best Doctors website. For around a fee of $25, their Best DocFinder service provides names of two top doctors within a specified geographic region who specialize in a particular condition. For a higher fee, their AcuMatch program assigns patients to a registered nurse advocate who helps them get the best medical care possible. Unlike free referral services that often list any doctor who pays to be included or are little more than advertisements for a hospital’s staff, Smith says that Best Doctors, Inc., charges fees so it can stay independent. (Discover other doctor-referral sites that help you pick the right doc.) In contrast, the cost of a medical mistake can be enormous, notes the Best Doctors, Inc., website, which cites studies indicating that 40% of patients with chronic conditions do not get the treatment recommended by the medical literature, and 20% of patients with chronic conditions get the wrong care, while 30% of patients with acute conditions get the wrong care. And then there are the estimated 44,000 to 98,000 people who die each year as a result of medical errors. More from Prevention: Do You Live Near A Top Hospital? [pagebreak]

Pack Your Bags

One reason for these alarming statistics is the common perception that all doctors are essentially the same, which Smith asserts just isn’t so. Not only are there differences in abilities and training but also in experience with specific conditions. That’s why he urges anyone faced with a serious diagnosis to recognize that “the sooner you get under the care of somebody who knows what they’re doing, the better.”  This often means going to a major medical center. “The data tells us that treating these serious illnesses in the major medical centers most used to handling them is the number one indicator of a successful outcome,” Smith says. Yet many people facing scary diagnoses are reluctant to leave home to seek treatment. “I’m stunned by the people who will drive 8 hours to see a nephew or 4 hours to see a football game but won’t drive 2 hours to a major hospital,” says Smith, who calls this attitude a form of denial. “People minimize the seriousness of their situation by telling themselves, ‘I don’t have to go to a big cancer center in the city because my cancer’s not that serious.’ They’re drawn to solutions that involve the least interruption in their life and think it’s a reasonable trade-off, but it’s not.” Not only does realistically facing a dire diagnosis help you get the best care, he says, “but it also helps you deal with what’s going on inside, the anxieties and fears. There are positive psychological, emotional, and even some physiologic benefits to getting in the driver’s seat and taking control of your life when you have a serious illness like this. (Follow our guide to protect yourself from common medical mistakes.)

Find a Helpful Partner

But this doesn’t mean that someone grappling with serious illness should try to handle matters alone. A support system is essential, says Smith, who recommends bringing a trusted friend or family member to each doctor visit to help hear and digest the information and ask appropriate questions. He shrugs off the common concern about alienating doctors with excessive questions by emphasizing that the doctor-patient relationship should be a partnership. “Your responsibility is to be informed about your illness so you can ask questions,” he maintains. “Your doctor’s part is to answer them all, fully and patiently.” While these steps can help optimize your chances of the best possible outcome, Smith is careful to note that “it’s not a recipe for success. There are no guarantees. But it will give you peace of mind knowing that you’ve done everything you possibly could.” Health care experts echo Smith’s advice that patients arm themselves with as much information as possible. With near daily advances in treatments and the ability to access cutting-edge resources through the Internet, “there’s no excuse for not being educated about your condition,” says Beth Battaglino, director of marketing and consumer affairs for the National Women’s Health Resource Center (NWHRC), a nonprofit organization based in New Brunswick, NJ, that’s dedicated to educating women about health and wellness. You can call them toll-free at (877) 98-NWHRC (986-9472). Or, visit the Healthy Women website. “You can’t assume that your doctor will do it all,” asserts Battaglino, who points out that many doctors have so many patients that it’s difficult to stay on top of everything. (Ever heard of “alarm fatigue?”) Finding the best treatment “needs to be a team effort,” she says. [pagebreak] Numerous organizations, including NWHRC, now offer free, comprehensive, objective medical information through toll-free numbers and web sites, notes Battaglino, who used these resources in 1997 when her younger sister was diagnosed with ovarian cancer at age 24. Even though Battaglino is a nurse and her sister was then a nursing student, she recalls that they were initially “paralyzed” by the diagnosis.  But the seriousness of her sister’s condition prompted Battaglino to spring into action, researching the illness and coming up with lists of pertinent questions, top cancer centers, and specialists. After successful surgery to remove the cancerous ovary, her sister is now fine.

Get a Second Opinion

The most basic piece of advice for anyone facing a serious diagnosis is to get a second opinion to establish the accuracy of the diagnosis, says Jerome Groopman, MD, a professor at Harvard Medical School who explores the complex, imperfect world of medical decision-making in his recent book, Second Opinions. It’s also critical to get a second—or even a third or fourth—opinion to determine the best treatment, he says. “In many cases, pathologists disagree, or test results may not be reliable,” says Dr. Groopman, who recounts the case of a patient who’d been diagnosed with an aggressive form of breast cancer and advised to undergo an extremely toxic form of chemotherapy. “I looked at those slides and wasn’t sure that it was an accurate assessment of the problem,” he recalls. “I suggested that she have the test repeated, and it turned out that the first test was wrong. She was treated very successfully with a nontoxic hormonal therapy.” Mistakes such as this inaccurate test are all too common, says Charles B. Inlander, president of People’s Medical Society in Allentown, PA, the nation’s largest nonprofit consumer health advocacy organization. “One out of every five diagnostic first opinions are not confirmed by second opinions,” he notes. And up to 80% of second opinions don’t get confirmation. “Don’t rely on a second opinion referral from your own doctor, advises Inlander. Shop around to find the most objective and competent practitioner possible. You’re looking for a physician who has treated your specific illness very often.” Whenever a medical procedure is recommended, Inlander suggests asking the doctor this question: How many of these have you done in the past year? For surgery such as a coronary artery bypass, at least 100 per year is reasonable, he says. For an experimental procedure, the numbers will naturally be small. More from Prevention: How Often Are Biopsies Wrong? [pagebreak]

Win the Insurance Battle

Although fear of high costs keeps some people from pursuing options away from home, “most insurance plans will pay for procedures done at the major centers of excellence,” says Inlander. “They know that these centers get better results, which in the long run is cheaper.” The patient is still responsible for travel and hotel costs, “but you usually don’t have to go that far,” he notes. “I know people who are alive today because they went to Johns Hopkins for pancreatic cancer. Isn’t that a worthwhile use of frequent flyer miles?” The key to getting insurance reimbursement for procedures at major medical centers is for the doctor treating you to refer you there, says Inlander. Insurance will also generally pay for second (or more) opinions, he says. Yet many people numbly accept whatever their doctor suggests, because a scary diagnosis sends them into a kind of shock. “Studies show that when the word cancer is mentioned, a patient doesn’t hear much of anything after that.” While that’s understandable, it’s also critical to “face the issue and do as much digging as possible,” says Inlander. “It’s a call to arms for you and your family members to jump into action.”

Critical Advice for Critical Illness

Gregory White Smith, cancer survivor, cofounder of Best Doctors, Inc., and coauthor of Making Miracles Happen, offers this advice when you get a scary diagnosis: 

  1. Take control of your illness. You may think you’re helpless, but you’re not. Take charge of your life with a combination of information and attitude. Be a part of every decision about your treatment. Resist the urge to leave it all in your doctor’s hands.
  2. Insist on options. There are multiple solutions to every problem in medicine. You just have to find them. Don’t be afraid of choices; embrace them.
  3. Find the right doctor. Not all doctors are created equal. When you’re seriously ill, it’s worth the extra effort to find the best one for your condition. It can make the difference, literally, between life and death.
  4. Build a partnership with your doctor. A true partnership means that there are special responsibilities on both sides. Yours is to be informed about your illness, so you can ask questions. Your doctor’s part is to answer them all, fully and patiently.
  5. Recognize that all medical decisions are trade-offs. Every decision regarding treatment involves weighing costs against benefits. To strike the right balance for you, get all the information you possibly can, then look carefully inside yourself and decide what really matters.
  6. Find an advocate (or be your own). In a managed care environment, getting the best care can be a struggle. You can end up fighting your HMO as well as your illness. If you haven’t got enough fight to go around, enlist an advocate to do the fighting for you.
  7. Subdue the enemy within. When that little voice inside says “Why me?” you must resist self-pity. Also resist feeling guilty. Yes, your loved ones are going through hell, but it’s not your fault.
  8. Build a support network. Recognize that you have to depend on people—family, friends, caregivers, support groups, strangers, it doesn’t matter who—to get through this. But don’t expect more of people than is reasonable.
  9. Know when to draw the line. There’s a line beyond which the price of survival is just too high, a line between what is worth fighting for and what is not. Doctors often draw this line for patients; draw it for yourself.
  10. Never say never. Everybody reacts to diseases, drugs, and treatments differently. Every doctor has seen “hopeless” cases turn around. For all the advancements in medical knowledge, the human body remains wondrously strange—and full of surprises. [pagebreak]

Where to Search on the Internet

For every good Internet health site, there are dozens of bad ones that will give you wrong information or send you on a wild-goose chase. Below are some of the good guys.  

  1. Best Doctors, Inc., is a pioneering, independent physician-referral service based in Arlington, VA. It offers free health information and charges fees to help patients connect with the best medical care for their specific concern.
  2. National Women’s Health Resource Center is a nonprofit organization based in New Brunswick, NJ, that is dedicated to educating women about health and wellness. Call toll-free (877) 98-NWHRC (986-9472) or go to their web site.
  3. Healthfinder is a free gateway to reliable consumer health and human services information developed by the US Department of Health and Human Services. 
  4. National Institutes of Health (NIH) in Bethesda, MD, provides publications and fact sheets about a host of health concerns, plus information on clinical trials and activities at the various institutes.
  5. MEDLINE and MEDLINEplus offer up-to-date, quality health care information from the world’s largest medical library, the National Library of Medicine at the NIH. MEDLINE is geared to health care professionals, while MEDLINEplus is for anyone with a medical question. 
  6. Centers for Disease Control and Prevention (CDC) in Atlanta offers a variety of information about public health concerns, from the latest on flu shots to protecting yourself when you’re traveling. 
  7. The Mayo Clinic website provides health information with material developed or reviewed by physicians and researchers from the Mayo Clinic, which is based in Rochester, MN. More from Prevention: How To Find The Right Hospital