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First Person

Be Your Own Greatest Ally in Battling Cancer

November 02, 1998|LAURA LANDRO | SPECIAL TO THE TIMES

Landro was diagnosed with a life-threatening cancer in 1991. The story of her battle against the disease is told in her new book, "Survivor: Taking Control of Your Fight Against Cancer." In this column, Landro offers her suggestions for how patients fighting serious illnesses can learn to navigate the medical system.

*

One day, out of the blue, you or someone you love may hear some variation on these words: "You have cancer."

For me, the bad news came shortly after my 37th birthday, when I was diagnosed with chronic myelogenous leukemia, a form of blood cancer that strikes thousands of American adults and children each year.

I soon learned that my only hope for a cure was a bone marrow transplant, a radical and painful therapy that was itself potentially fatal. The good news was that my brothers, Art and Chris, were both identical sibling matches, able to donate the healthy marrow that could save my life. But there were important decisions to make, and many risks to evaluate, and I was starting from ground zero: total ignorance.

After my first reaction--sheer terror--I resolved to take action. I had nearly 20 years' experience as a reporter and editor, and I used my training as a journalist to help me research my disease and its treatment and figure out how to go about actively trying to save my own life. With the help of my mother, Beverly Landro, a nurse trained in oncology, and Marilyn Dammerman, a good friend with a doctorate in immunobiology, I unearthed important data and medical papers that quickly educated me about my disease and the fast-evolving science of bone marrow transplantation.

What we found shook me up. But it also convinced me to withdraw from treatment at my local cancer center in New York and undergo a transplant at the Fred Hutchinson Cancer Center in Seattle, where our research strongly suggested my chances for long-term, disease-free survival were much better.

Six years after my transplant, I am free of leukemia. Had I not approached my diagnosis like an investigative story, and acted on my findings, I'm not sure I'd be alive today.

But you don't have to be a journalist with a nurse in your family and a medical researcher in your circle of friends to find out everything you can about a disease that threatens your life, and then intelligently analyze your options for treatment. The Internet--virtually unknown to the average person in 1991, when I was looking for information--has put a world of valuable data at your fingertips with the click of a mouse. Used correctly, it can be an excellent resource.

While the Internet has revolutionized patients' access to information, managed care has made it more difficult for some to seek outside medical opinions or to travel to distant treatment centers where they might have a better chance of a cure. That has made it all the more important for patients, armed with knowledge, to manage their own care. And remember, sometimes a doctor can be your ally when dealing with your health plan, fighting with you and supporting your quest for the best possible care.

Americans are great consumers; they know how to investigate which car to buy, which mutual funds to invest in and what college to send their kids to. Health care is the most important consumer decision you will ever make for yourself or your family; think of it that way and you won't be as daunted.

Here are some guidelines:

* Get the Facts: Initially in a cancer diagnosis, your doctor may give you only a brief overview or hand you a simplified pamphlet explaining your disease. Using the Internet, the resources of your cancer treatment center or local medical school library, you can more thoroughly inform yourself on what you are up against. When I was diagnosed with leukemia, I barely understood what it was, and I certainly had no idea what bone marrow had to do with anything.

The National Library of Medicine and the National Institutes of Health and its affiliated National Cancer Institute are good starting places; both are available through various Internet links (http://www.nim.nih.gov or http://cancernet.nci.nih.gov).

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