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Step 1 - Trusting Yourself as the Real Expert About Your Health
"Each patient carries his own doctor inside him.
They come to us not knowing that truth. We are at our
best when we give the doctor who resides within
each patient a chance to go to work."
Albert Schweitzer, M.D.
The itching began in the middle of a humid summer night. Carol Watkins bolted upright in bed, flicked on the light, and checked for mosquito bites. She had spent the evening on the deck of her condo, sipping a margarita and talking nonstop with her dearest friend about their new status as divorced single moms. The citronella candle hadnt done much good, but the two women ignored the bugs. They were determined to enjoy the lilac-scented breeze and the starry sky. Carol figured she was paying the price. To her surprise, though, there were only a few bites and they werent where the itching was. It was intense and generalized, making her want to dig at her skin with her nails.
An ominous shiver went through her. Although this was by far the worst episode, Carol had been feeling mildly itchy for several months. She hadnt thought much about it, even when it gradually got worse. Now, though, the words "Something is really wrong with me" popped into her head. She got up and found the calamine lotion. It helped a little and she finally fell into a fitful sleep.
The next morning, the itching was still there. After putting her two daughters on the bus for day camp and driving to her job as an executive secretary at an accounting firm, Carol called her doctor. He told Carol to try a moisturizer, since it sounded as though she had dry skin. Carol hung up the phone and stared out the window for a moment. This time, she said the words out loud: "Something is really wrong with me." The itching had gotten worse and now it was everywhere, a deep and urgent feeling unlike anything she had ever experienced before. Still, the doctor hadnt seemed at all concerned. Carol didnt want to come off like a wimp or a hypochondriac and she reasoned that anybody who had been to medical school must know what he was talking about. Anyway, Carol thought maybe the itching was just psychosomatic. She was having a rough time adjusting to the divorce, especially when she had to drop the kids off at her exs house and see him with the Other Woman.
A week later, though, Carol gave in and called her doctor again. She felt silly, but she told him the moisturizer hadnt helped. He referred her to a dermatologist. Carol heaved a huge sigh, sure she was going to get some relief at last. The dermatologist couldnt find anything specific, however. But he did prescribe an ointment he thought would take care of the problem.
It didnt. By this time, Carol was going out of her mind trying to take care of the girls and pay attention at work on very little sleep. She tried two more dermatologists and one cream after another, but nothing worked. Eventually, fate stepped in. Carols employer switched insurance plans. She had to choose a new primary care provider and go for a complete physical. She ran her finger down the list of doctors and picked me.
I first saw Carol Watkins for what I thought would be a routine visit on a burnished September afternoon over a year after her first severe bout with the itching. She was obviously embarrassed to tell me her symptoms. I remember her words well. "Its just itching, but it seems like it comes from inside. Ive had kind of a bad year, so maybe this is nerves. But I cant help wondering whether theres something really wrong with me." I put my hands on the lymph nodes on either side of her neck. Experienced fingers can feel even a slight enlargement. Carols right node was swollen, but it wasnt causing her any pain. I ordered blood tests and then a biopsy of the swollen lymph node, but I was pretty sure I already had my diagnosis: Hodgkins disease, a type of lymphoma that has a distinctive cancer cell. Pruritus, the medical term for itching, is a common symptom. And at thirty-two, Carol fell into the riskiest age group, fifteen to thirty-four.
The tests and biopsy confirmed my educated guess. Carol turned out to have Stage 1 Hodgkins, limited to a single node on one side of the body. As I always do with my patients, I gave her copies of the test results and helped her understand them. Her complete blood count (CBC) and blood chemistries were all normal, including her liver tests. This reassured me that she probably didnt have advanced disease. However, her sedimentation rate, at 64, was abnormally elevated. The average for women is about 20. The "sed" rate is a tipoff that something systemic and significant is going oneither inflammation, infection, or cancer. In addition, Carols biopsy showed the typical cell of Hodgkins, the Reed-Sternberg cell.
"Youre lucky, insofar as anyone with cancer can be called lucky," I said gently. "The prognosis is very good. Im going to send you to a cancer specialist, an oncologist. In most cases like yours, radiation is all thats needed and the cure rate is high." Carol managed a smile, and put the copies of her results in her purse. "Well, at least now I know whats wrong," she said. "Even though its not the worlds greatest news, I feel better already." Throughout her treatment, she saved all her reports, summaries, and test results and shared all the findings with her radiation specialist and oncologist. She didnt have to repeat her story or worry that they didnt have the information they needed. She was truly at the center of her care, not at the periphery.
Theres a happy ending. Radiation cured her, as is true in 90 percent of cases similar to hers. But the lesson here is that Carol could have kept ignoring her own instincts, allowing the cancer to spread and her chances of recovery to lessen. When the itching didnt subside after a few months, she should have made an appointment for a physical with her doctor. Checking the lymph glands is a routine part of any examination and he would surely have made the diagnosis. But like most physicians today, he probably had what we call a "panel" of at least a thousand patients and maybe as many as 2,500 or more. He no doubt left it up to the patients to make and keep their appointments and to communicate with him. Im not making excuses for him, and its your judgment call as to whether he should have decided that a year was too long for him to keep giving Carol phone referrals to dermatologists without having a look at her. But the point is that he didnt ask to see her. That left the ball in Carols court. Yet she was afraid to seem pushy or paranoid and she thought her problem might be all in her head, so she never clearly stated the fact that she suspected something serious was going on.
Shes certainly not alone. Most people dont trust their "doctor within." Theyre too humble for their own good. Yet study after study has shown that patients know much more than they think they do about their own health. For example, researchers at Purdue University tracked seven thousand patients ages twenty-five to seventy-four for twenty years beginning in 1971. Dr. Kenneth Ferraro, a sociology professor, headed a team which had the subjects rate their own health from poor to excellent and fill out a questionnaire about their diseases. Then doctors looked at the patients self-assessments, did extensive examinations, and wrote their own evaluations. The result? In every case, the patients own report was as accurate or even more accurate than the physicians was. Or as renowned British physician Sir William Osler put it, "Listen to the patient. He is telling you the diagnosis."
Even so, patients are typically cowed by doctors and other health care professionals. Theyre afraid to have faith in their own instincts. If that includes you, youre actually making your doctors job harder. Time and again, Ive asked patients what they think might be wrong and they have said, "You tell me. Youre the doctor." But studies show that 80 percent of what doctors go on when they make a diagnosis is what patients tell them about their symptoms, history, and lifestyle. Technology is wonderful and we have many sophisticated diagnostic techniques that werent available even a few years ago. Still, there is no substitute for what you know about how you feeland how it is different from the way you usually feel. Believe it.
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