Finding answers to your health questions is easy. The hard part is knowing what questions to ask.
Many health questions are obvious: What's the diagnosis? How is it treated? Will I get better?
But increasingly, the key questions we should be asking about some of the most common and serious health problems aren't so easy to figure out. With so many advances occurring almost daily in medicine, it's often impossible for patients to know what's real and what's hype. To help wade through the confusion, we asked doctors, patients and other health experts to focus on five key questions patients should ask if they are facing three of the most critical and complicated health problems: cancer, heart disease or surgery.
To be sure, asking questions of your doctor isn't always easy. Some of these questions are controversial and may be dismissed by your doctor because they are based on still-evolving science. Others may be difficult to ask because they challenge the expertise or authority of your physician or surgeon. And you may not always get the answers you were hoping for.
But asking these questions will, at the very least, arm you with new information — and may sometimes lead to dramatic changes in the course of your care.
1. Are you sure?
Most patients don't think to question a cancer diagnosis, but they should. If a doctor tells you that you have cancer, you probably do. But cancer is complicated, and it can be mystifying under a microscope. In between a diagnosis of benign cells and a malignancy are a dizzying array of possibilities, and sometimes — more often than you'd expect — the pathology report is wrong.
Research at Johns Hopkins University in Baltimore has shown that about 1.4 percent of the time, a pathologist mistakenly diagnoses cancer, gets the type of cancer wrong or misses a cancer altogether. Errors that can significantly change the type of treatment are even more common. The risk of error depends on the body part and type of cancer. In the Johns Hopkins review, 5 percent of biopsies involving the female reproductive tract and 3 percent of skin-cancer pathology reports had errors. In prostate cancer, mistakes are made about 20 percent of the time in staging and grading, findings that can make the difference between conservative treatments or aggressive surgery. A Northwestern University study of 346 breast cancers resulted in pathology changes in 80 percent of cases, including major changes that altered lumpectomy or mastectomy plans for 8 percent of the women.
So, the first step in any cancer diagnosis is to tell your doctor you want a second opinion from a pathologist who specializes in your type of cancer. Insurance almost always covers the cost. Major cancer centers typically have several specialized pathologists, and the results usually only take a few days.
"I even talk to physicians who don't realize it's a gray zone," says Jonathan Epstein, the Johns Hopkins professor who has led research on pathology errors. Last month, Epstein reviewed slides from a patient who was told he needed 15 painful prostate biopsies to assess a precancerous condition. The review showed it was benign. "You want to make sure you have the correct diagnosis," says Epstein. "It's what will drive the correct treatment."
2. Has my cancer been properly staged?
With cancer, the devil is in the details. The staging of cancer from 0 to IV indicates the extent and severity of the disease and is the deciding factor in treatment.
The stage of a cancer isn't always obvious, and many patients don't think to have it double-checked. But the accuracy of the staging often depends on the experience of the radiologist and the quality of the scans he or she reads. Sometimes illnesses like heart disease, diabetes and even arthritis can trigger false positives on some scans, prompting an inexperienced radiologist to diagnose a later-stage disease than is really there.
Patients on the extremes — with early-stage cancer or late-stage disease — have the most to lose from a staging error because that's typically where the biggest differences in treatment occur.
"You always want to know the strength of the evidence behind the staging," says Harmon Eyre, an Atlanta oncologist and chief medical officer of the American Cancer Society. "People can have scars or nodules — it's always possible that what you see on a scan represents something else."
3. Are there molecular markers or laboratory tests to show what drugs will work best on my cancer?
Many cancer doctors will bristle at this question, and most will quickly answer no. But before you accept that answer, find out for yourself.
One potential option is molecular profiling. Doctors will tell you the technology is experimental, but the truth is that it's already helping people with certain cancers. In recent weeks, Harvard Medical School's laboratory for molecular medicine began offering genetic-sequencing tests so lung-cancer patients can find out if the drug Iressa is likely to work for them. And patients with certain types of leukemias, lymphomas and breast cancer may be candidates for targeted therapies, depending on the molecular profile of their disease.
To be sure, most cancer patients won't benefit from molecular profiling — today. But consider this: The news of a genetic mutation in Iressa responders was published in April 2004, and just four months later Harvard began offering a test for the mutation. As a result, scientists are racing to identify other common genetic mutations that might signal whether one of several approved or experimental targeted drugs is likely to work.
"It's evolving pretty quickly," says Pasi A. Janne, oncologist at Dana Farber Cancer Institute in Boston. "It may not be today, but it may be next year."
Even if your cancer isn't a candidate for molecular profiling right now, your treatment could be guided by chemo sensitivity and resistance assays. The CSRA test uses a sample of your tumor in the laboratory against several combinations of chemotherapy drugs. Most oncologists don't use the tests, instead prescribing drugs based on how they did in clinical trials. But just because a drug performed best in a clinical trial doesn't mean it will work on your cancer.
Studies show that patients who get CSRA-guided therapy are more likely to respond to treatment, but the experts disagree on whether using CSRA tests improves survival.
Even so, the anecdotal reports are compelling. Dick Wiedenbeck, 58, of Windermere, Fla., was given three months to live in 1999 when he was diagnosed with a rare form of pancreatic cancer. When the standard drugs at the time — 5-FU and Streptotocin — didn't work, he had his cancer tested by the Weisenthal Cancer Group in Huntington Beach, Calif., which recommended the drugs Carboplatin and Gemzar. Today he lives with a small, inoperable tumor that hasn't grown in four years. "I have found that the medical community has almost no experience with these testing techniques and their potential benefits," Wiedenbeck says.
4. Is this the best place for me to be treated?
To start, patients should find out whether their hospital's cancer program is accredited by either the National Cancer Institute or the American College of Surgeons Commission on Cancer. The groups review the quality of the education, monitoring and outcomes.
Many patients get treated by the doctors who first diagnose them. But even if you have started cancer treatment, you should still seek second opinions, if only to confirm you're getting the best care. When Nancy Walker, 43, started treatment for lung cancer, she chose a hospital close to her Clinton, Conn., home. She wasn't unhappy with her care, but she continued to seek information and met with doctors at Dana Farber Cancer Center in Boston. There she learned the chemo schedule she was on was unusual and not standard practice. She switched to Dana Farber and was eventually started on the drug Iressa, to which she has shown a dramatic response.
Searching for the most experienced doctors is particularly important with rare cancers or difficult cases. In 1999, Emily Hibner, 36, was told by two oncologists in Charlotte, N.C., that chemo to treat a rare synovial sarcoma wouldn't save her. An Internet search convinced her that doctors at the University of Texas M.D. Anderson Cancer Center in Houston would probably know more. "A lot of people have never seen a sarcoma case in their life, but at M.D. Anderson they see 20 different types of sarcoma," says Hibner, who moved to Houston for treatment and is now in remission.
5. What are the newest treatments?
Many patients don't ask about this because they don't want to risk receiving an experimental treatment. But not only will asking the question give you important information, it will also tell you how well your own doctor is keeping up with the latest research into your cancer.
Even the most conscientious doctor can't always keep up with recent developments. So keep asking the question, looking to other doctors, patients, support groups, clinical-trial databases, medical journals and the Web to learn for yourself.
When doctors told Dorothy Sutton her 89-year-old mother would need surgery or radiation to treat squamous-cell cancer on her leg, she was worried the treatments would be hard for an elderly woman. She called the medical research firm Health Resource in Conway, Ark., and learned about imiquimod cream, an FDA-approved drug for genital warts that was showing promise in treating some skin cancers. She suggested it to her mother's Miami doctor, who agreed to try the treatment. "I had to point it out to him,' " says Sutton. "The options were never presented to me."
1. What is my Framingham risk score?
Much of what we know about who gets heart disease and who doesn't comes from a 50-year study of the residents of Framingham, Mass. One of the most practical tools to come out of Framingham is a simple score that predicts your chance of heart attack in the next 10 years, based in part on four major risk factors — high cholesterol, high blood pressure, diabetes and smoking. Patients should start checking their score as early as the age of 20 and no later than 40, but many doctors still don't use it.
If your 10-year risk is greater than 20 percent, you don't need to know much else. Your risk is high, and most doctors will treat you aggressively and encourage major lifestyle changes, like weight loss and exercise. But patients with a risk of 5 percent to 20 percent should probably keep asking questions. The Framingham score doesn't factor in family history or new emerging risk factors, so a prediction of low or medium risk isn't always reliable. For instance, Framingham puts Bill Clinton at intermediate risk, but his recent need for bypass surgery shows he really was in the high-risk category.
2. What do some of the novel risk factors say about my heart health?
Many doctors will tell a seemingly healthy patient not to worry because they aren't at risk for a heart attack. But the truth is, a doctor relying on traditional risk factors simply doesn't know if you are in the clear. That's because 20 percent of people who have heart attacks — or more than 200,000 people annually — don't have one of the four major risk factors.
One of the most useful tests for better predicting heart-disease risk may be a $20 C-reactive protein test, a blood test that measures a protein that can signal inflammation in the coronary arteries. A score of three or higher puts you at high risk, while a score below one is ideal. Some doctors still argue that the test is unreliable or that arthritis or gum disease could trigger a false positive, but nearly two dozen studies support its use. Doctors at the Cleveland Clinic now use CRP as a routine test for patients as young as 20, says Stanley Hazen, head of the clinic's section of preventive cardiology and cardiac rehabilitation.
Other novel risk factors include the blood markers homocysteine, fibrinogen or LP(a) (pronounced L-P-little-a), all of which can signal hidden heart disease. Some doctors are using heart scans to measure calcium in the coronary arteries. Knowing some or all of these risk factors can help a patient decide just how aggressive treatment should be.
3. How is my waist size?
Most doctors check to see whether you are at a healthy weight, but few pay close enough attention to the specifics of your waistline if you're not significantly overweight.
But the size of your waist — greater than 35 inches for women and 40 inches for a man — is an important predictor of your heart health and may be one sign that you are at risk for metabolic syndrome, a collection of risk factors that make you vulnerable to diabetes and heart disease, says Robert Bonow, chief of cardiology at Northwestern University Feinberg School of Medicine, Chicago.
A tape measure around the waist is a way to measure the unhealthiest fat in your body — the visceral fat that accumulates in the abdominal cavity. The fat around your middle is believed to be particularly insidious, secreting damaging proteins and interfering with liver function. Waist size isn't a reliable marker in African-Americans, but for many patients, abdominal fat can signal looming heart disease. Big-waisted patients should carefully monitor triglycerides, HDL (so-called good cholesterol) and blood glucose and exercise to reduce abdominal fat.
4. Is my blood pressure low enough?
If you think your blood pressure is fine, check again. Nearly one-third of patients with high blood pressure don't realize it. And nearly 70 percent of patients with high blood pressure don't have it under control.
Hypertension is defined as blood pressure of 140/90 or higher. But people with readings between 120/80 and 140/90 have "prehypertension" and may be at risk for future problems. New research has found that the risk of death from heart disease and stroke begins to rise at blood pressure as low as 115/75. That means damage can start long before people traditionally get treatment.
Increasingly, doctors are paying attention to pulse pressure, the difference between the first number (systolic pressure) and the second (diastolic pressure). Pulse pressure is an indicator of stiffness and inflammation in the blood-vessel walls, and studies have shown it to be a strong predictor of heart attack and stroke risk. The ideal gap between the two readings is between 30 and 40 — anything above or below that range signals increased risk for heart problems.
5. What can you tell me about my short-term risks?
Much of the focus on risk factors like cholesterol, blood pressure and weight is aimed at lowering a person's risk of heart attack or cardiac complications in the future. But increasingly, doctors are working on identifying those patients who may also be at risk for heart attack in the next few months.
Last month, a study in the medical journal Circulation found that very high levels of C-reactive protein in patients with stable angina can signal risk for very rapid narrowing of the arteries. It's important because patients with stable angina, which is chest pain that isn't a heart attack, may be considered non-urgent candidates for angioplasty. Identifying patients likely to get worse quickly will allow doctors to treat them sooner.
Within the next year, a simple blood test for the enzyme myeloperoxidase, or MPO, can help alert patients with chest pain whether they are at immediate risk for a heart attack. About 26,000 patients a year have a heart attack after being sent home from the emergency room because existing tests showed they weren't at risk. Women and younger patients are most likely to be sent home by mistake.
Research at the Cleveland Clinic shows that the MPO test not only indicates who is at imminent risk but also can help identify those patients most likely to need a major heart procedure or suffer a heart attack during the next six months.
Although an angiogram can gauge heart-attack risk, it's an invasive catheter procedure and typically isn't performed on an otherwise healthy patient. Now, however, doctors using a combination of CT and MRI scanning can assess whether plaque buildup is benign or risky, without subjecting a patient to a catheter, sedation or hospitalization.
1. How many times have you done this?
Of all the questions patients can ask their surgeons, this is the most important. Last fall, the New England Journal of Medicine reported that a patient can dramatically improve his or her chances of survival, even at high-volume hospitals, by picking a surgeon who has performed the operation frequently. In the study, Dartmouth University researchers reviewed the cases of 474,108 patients who underwent one of eight cardiovascular or cancer procedures. In every case, the number of procedures a surgeon had performed made a dramatic difference in mortality rates. Compared with those who had surgery done by high-volume surgeons, a patient operated on by a low-volume surgeon was 65 percent more likely to die undergoing repair of abdominal aneurysm, 44 percent more likely to die during aortic valve replacement and 2.3 times as likely to die during surgery for esophageal cancer.
Exactly how many procedures is enough to qualify as high-volume varies depending on the surgery. In the Dartmouth study, high-volume surgeons performed more than 162 heart bypass operations a year, compared with fewer than 101 a year by low-volume surgeons. But for a complex pancreatic surgery, more than four procedures annually was considered high volume, compared with less than two by low-volume surgeons.
Patients can research volume-outcome data for a procedure on the Internet or ask several doctors to compare experience. Thomas Sculco, surgeon-in-chief at the Hospital for Special Surgery in New York, performs about 500 hip and knee replacement procedures a year. But he says the key is also how regularly and recently a procedure was performed. "It's not only the ultimate number, but that it's being done on a regular basis," says Sculco. "In orthopedics, a surgeon should perform about one a week. If he does one a month, he's just not going to be that experienced."
The hospital matters as well. For four of the procedures, the volume of procedures performed at the hospital remained a factor in mortality rates regardless of the experience of the surgeon. In another study of pancreatic-cancer surgery, 16 percent of patients died during the surgery at low-volume hospitals, compared with 4 percent at the high volume hospitals. When high-volume hospitals were compared, the difference was still dramatic. The top 10 highest-volume hospitals had an average 2 percent mortality rate, vs. a 6 percent average rate by other high-volume hospitals.
Hospitals can tell you how their volumes compare with those of other area hospitals. And ranking services like U.S. News and World Report list the volume of hospital discharges for the top-ranked hospitals in 17 specialities.
While going to a high-volume hospital increases your chances of finding an experienced surgeon, it's no guarantee. Barry Fitzpatrick, 58, met with two surgeons at top academic hospitals in California about removing a rare benign tumor behind his sinus cavity. The eight- to 12-hour surgeries they described would have required large facial incisions and breaking his jaw, possibly leaving him with facial paralysis and unable to speak. But many questions posed to doctors and friends instead led him to a Houston surgeon who deftly removed the growth in a few hours, with no broken bones or other damage.
"This was pretty rare, but my doctor didn't view it as all that rare — he did about one a month," says Fitzpatrick, a lawyer in Rancho Santa Fe, Calif. "I was just struck by the differences that exist even among sophisticated medical centers. You need to find the physician who has seen whatever your problem is and has seen a lot of it."
2. Do you know the anesthesiologist?
A good surgeon will typically work with the same few anesthesiologists. "If they don't know the name, then it's like pot luck," says Evan Levine, a New York cardiologist. Levine likens a surgical team to this year's U.S. Olympic men's basketball team — even if it's made up of skilled stars, that doesn't mean they can work well together. "There are a lot of personalities in the operating room," says Levine. "You want a surgeon and anesthesia person to think alike and to get along and communicate well."
Sculco says he is particular about his anesthesiologist and works with about five doctors regularly, depending on the schedule. But most of the time, he chooses one in particular who is particularly skilled at administering epidural anesthesia. "He's very facile and adept," says Sculco. "There's nothing more frustrating for a surgeon than to be concentrating on what he's doing on the operating field and feeling like the anesthesiologist may not have full control of what's happening."
3. Whom would you go to?
Patients are often referred to a surgeon by their regular doctor or a specialist. Almost without exception, doctors say the best question to ask a doctor is where they would go themselves or send a family member.
When New York oncologist William Grace injured his knee, he went to a friend who was an orthopedic surgeon, who offered to do a surgical repair the next day. "I said, 'Thank you, but if it was your knee, who would be doing you?' " says Grace. He knew the advice was sage when he learned the patients being treated before him were football stars Ahmad Rashad and Phil Simms.
4. Can it be done with a less-invasive procedure?
One of the biggest problems with seeking the advice of a surgeon is that the best surgeons like to do the procedures they are best at. But that means new procedures or less-invasive options may not always be discussed. Patients should also seek the advice of non-surgeons to be sure they should proceed with a recommended surgery.
For instance, surgeons often advise women with fibroids to get hysterectomies. But an interventional radiologist would offer a non-surgical uterine fibroid embolization. For heart problems, a cardiologist might suggest a catheter-based procedure, while a cardiac surgeon might propose a more involved surgery.
Even among surgeons, practices vary. Among back surgeons, some doctors prefer an open-back spinal fusion surgery, while others now routinely perform endoscopic and laparoscopic procedures. Breast-cancer patients may get varying opinions on whether they are candidates for breast-preserving surgery.
But just because a procedure is less-invasive doesn't mean it's better. Often there's far more long-term data on traditional surgery, and even less-invasive treatments carry risks.
5. What's on the horizon?
Medicine moves so quickly that time can be on your side. Patients facing elective surgery should ask about potential new developments that might make it worth waiting. For instance, some patients who are candidates for spinal fusion to treat back pain are instead waiting for the approval of a new artificial disk, which has shown promise in Europe and in clinical trials. And several studies are under way to develop safer and less-invasive methods for repairing abdominal aortic aneurysms, which now typically require risky open surgery.
"Patients should ask if there's something that is going to become available in two or three years that will change the operation," says Sculco. "If you're a specialist, you know what's coming down the pipeline."