Magazine article American Libraries

Librarian as Patient: A View from the Other Side

Magazine article American Libraries

Librarian as Patient: A View from the Other Side

Article excerpt


Medical librarians often say that behind every question there is a patient, but I never expected the patient to be me.

One morning, while showering and getting ready for a busy day, I felt a lump in my right breast and soon became one of the more than 180,000 women diagnosed with breast cancer in 1997. Although cardiovascular disease kills more women than all cancers and lung cancer is the leading cancer cause of death in women, breast cancer is the number-one cause of death for women ages 35 to 44. I am 47.

During the next few weeks, I had to assimilate this new reality and make decisions I hoped would optimize my chances for survival. I asked the same questions that probably every newly diagnosed cancer patient asks: What is going on? What will happen to me? What can I do to help myself? As a medical librarian, I also had the confidence and skills to ask and help answer questions like: Does the antibiotic flagyl interfere with the effectiveness of the chemotherapy drug methotrexate? Should chemotherapy be delayed in a patient with elevated liver enzymes?

My other resources were considerable. I have a secure job and had accumulated hundreds of hours of sick leave. I am enrolled in an HMO that provides good cancer care. My husband is an excellent physician who keeps up with the medical literature. His clinical expertise gave him a more comprehensive view of my situation, and he worried. lie also gave me invaluable advice: for example, encouraging me to ask for Zofran, an expensive but effective antinausea drug. My family and friends provided support without smothering me. My mother is a 12-year survivor of ovarian cancer, and I hoped I had inherited her immune system. My sister-in-law learned that she had ovarian cancer the same week I was diagnosed, and our weekly telephone calls helped both of us cope.

One fact at a time, thank you

Even though I am experienced in finding medical information, I had to build a personal knowledge base and incorporate one fact at a time. Digesting the meaning of those facts was yet another step. The pathology report showed four lymph nodes positive for cancer. According to the textbooks, that put me at high risk for recurrence. I assimilated the phrase "high risk," but it wasn't until I was searching the National Cancer Institute's database of clinical trials on the Internet ( that I saw the phrase "poor prognosis" applied to my situation and literally had to push myself away from the computer. Even the Web, source of so much good information, could deliver bad news.

When I read the cancer literature for meaning and for making personal decisions, I realized how much has been written yet how little is understood about cancer biology and effective therapy. The slight decrease in breast cancer mortality since 1989 is generally attributed to early detection rather than to effective therapy. I found it difficult to find answers to patient-specific questions in the research literature.

Large, randomized clinical trials provide the scientific basis for treatment decisions. These trials report results for groups with characteristics that may not exactly match those of an individual patient. Also, the results of studies begun years ago do not take into account the effect of newer, accepted treatments. Reported results of more recent studies may be positive, but survival might be measured in months rather than years. Cumulative outcome data for the standard regimens (used to treat women with four or more positive nodes) indicated approximately 40% survival at 10 years. I fretted, and then I had a great idea.

My professional colleagues include people who work in major cancer centers as well as several women who had recently been treated for breast cancer. I composed an e-mail message to them describing the situation and asked three questions: Can you recommend a great oncologist for a second opinion? …

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