Be Your Own Greatest Ally in Battling Cancer
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.
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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 (https://www.nim.nih.gov or https://cancernet.nci.nih.gov).
* Don’t Be Intimidated by Technology: Even if you have only the most rudimentary computer skills, or none at all, you probably have a friend or neighbor who can help; if you have no computer, your local library has them available with free Internet access. Stick to reputable sites that are clearly connected with government and university-funded research, or Web sites maintained by current or former patients who have already done their own homework, lived through cancer treatment and devoted themselves to providing a road map for others. Leukemia patients, for example, can visit GrannyBarb and Art’s Leukemia Links, maintained by survivors Art Flatau and Barbara Lackritz (https://www.acor.org/leukemia/). The best cancer treatment centers already have joined the Internet revolution. A visitor to the Fred Hutchinson Cancer Research Center’s Web page (https://www.fhcrc.org) will find articles written in laymen’s terms about the latest therapies for different forms of leukemia, or the newest protocols for breast cancer treatment. Stanford University’s Web site (https://www-med.stanford.edu/center/intro.html) allows you to look up the scientists at the division of oncology, lists their publications and provides other valuable information.
* Don’t Be Afraid of Medical Data: Medical papers and journals can lead you to work that is on the cutting edge of your disease. You can find some on the Internet or at a medical library, and you can also ask your cancer treatment center for its own recent studies. Yes, statistics can be a little frightening, but they can give you a real idea of how effective a particular hospital is in treating your disease. Had I not looked at the scientific papers, I would not have learned as much about the two or three different procedures for performing bone marrow transplants. And those studies clearly showed that the hospital I initially was being treated at had reported by far the worst results for my form of leukemia.
To be sure, medical papers can be indecipherable. But, in fact, most use plain English when it comes to discussing the most important findings or the conclusion of their research. * Don’t Assume Your Doctor Knows Everything: Unless you are being treated by a top specialist, you may not be hearing about cutting-edge therapies or clinical trials that could offer some hope if standard therapies haven’t worked. With doctors themselves so harried by their managed-care administrative work, don’t assume your hometown physician is on top of the latest research. The NIH publishes clinical trials, and several institutions--for example, the University of Pennsylvania’s Oncolink Web site (https://www.oncolink.upenn.edu/)--have “search” services that enable you to find out about ongoing clinical trials.
* Don’t Be Afraid to Talk Back to Your Doctor: Many doctors are uneasy about this new era of the self-educated patient; they see you coming with reams of printouts from the Internet, and they groan. But some doctors appreciate a patient who cares enough to do his or her homework and asks intelligent questions. . If your doctor seems nonresponsive, seriously consider switching to a doctor you are more comfortable with. I dismissed my doctor and later changed hospitals in the pursuit of the right care.
* Network With Other Patients: Seven years ago, I was lucky to find two or three people who had had a bone marrow transplant and would talk to me about it. Today, the Internet has spawned a virtual cybercommunity of former and current patients who talk to each other through e-mail discussion groups and chat rooms. ACOR, the Assn. of Cancer Online Resources (https://www.medinfo.org) has nearly 100 e-mail groups addressing specific diseases. People not only offer moral support, but also exchange information and news and discuss their experiences with drugs and therapies. Some organizations also provide patient-to-survivor links, so you can talk to someone who has already lived through your disease. You aren’t alone. Don’t hesitate to reach out; it may help save your life.
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Laura Landro is a senior editor at the Wall Street Journal.
