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Wednesday, October, 08, 2008

Robin Roberts and the Teachable Moment

by  Craig Stoltz
Wednesday, August 01, 2007
Craig Stoltz
Craig Stoltz
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A veteran health journalist, I spent six years as editor of The...

Craig Stoltz

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Whenever high-profile people announce diagnosis of a serious disease, there is a very public "teachable moment" when millions of people are suddenly hungry to learn more about that condition. Robin Roberts' emotional announcement yesterday provides this opportunity in the world of breast cancer.


Today I'd like to contribute what I can to this moment. I will share the short list of information sources I've learned as a journalist offer the most dependable and unbiased patient information on breast cancer.

Don't worry, this won't be one of those long lists of "favorite sites." I'm listing just six. They are where I would turn of a family member or close friend were diagnosed.

For the best summary of current, unbiased, expert, evidence-based information on all aspects of breast cancer, start with the federal National Cancer Institute's PDQ report on breast cancer. It is the most rigorous and complete document of its type. If you want to go deeper, there is a "Health Professional" version available one click away. The pro version is tough sledding for laypeople, but it goes even deeper.

For updated information on the latest key studies, in layman's language, I recommend breastcancer.org's Research News reports. Each entry includes the media news report of relevant studies, supplemented with "What breastcancer.org says about this article." This helps you understand the context and the implications for patients. The service presents reports by month, and are usually updated within a day or two of publication, so you can survey the very latest information.

For information on clinical trials you may want to participate in, visit clinicaltrials.gov. With a widely researched condition like breast cancer, a simple search using the words "breast cancer" will produce an overwhelming list of results in language that's awfully hard to understand. So when you go to the search page, click "focused search" so you can narrow the results by U.S. state, keyword (say, "inflammatory" or "tamoxifen"), and so on. Usually this provides a more tailored, manageable list of options.

To find the nearest Comprehensive Cancer Center, start with this list. A Comprehensive Cancer Center offers both very high quality patient treatment and conducts government sponsored research. Unfortunately, the list is not broken down by cancer type. Check the Web sites of each center near you to verify that it deals with breast cancer, as most do.

People ranging from well-intentioned to self-interested will undoubtedly recommend any number of complementary and alternative therapies for cancer. An excellent evidence-based reality check on these treatments is located on the Web site of the Memorial Sloan-Kettering Cancer Center. For therapies you can't find there, I recommend checking with Quackwatch before considering any treatment. It includes some of the most rigorously skeptical coverage of non-conventional therapies.

 

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