Medical Diagnosis Research Web Site Launched: www.diagKNOWsis.org - Cancer Misdiagnosis Results in Tool for Others

Last year, in the span of 90 days, Trisha Torrey was diagnosed with a very rare form of lymphoma, and then, just short of starting chemotherapy, she learned she had no cancer at all. Little did anyone realize what its real results would be: development of an easily accessible resource for anyone who wants to research a medical diagnosis and its possible treatments.

Syracuse, NY (PRWEB) April 25, 2005 -- Last year, in the span of 90 days, Trisha Torrey was diagnosed with a very rare form of lymphoma, and then, just short of starting chemotherapy, she learned she had no cancer at all.

Little did anyone realize what its real results would be: development of an easily accessible resource for anyone who wants to research a medical diagnosis and its possible treatments.

Torrey, a 53-year old marketing consultant, found a golf ball-sized lump on her abdomen in late June 2004. The next day her family doctor sent her immediately to a surgeon to remove the lump. Two weeks later, the surgeon told her she had SPTCL, subcutaneous panniculitis-like T-cell lymphoma, an aggressive cancer from which victims rarely survive more than a year. But feeling no symptoms, and learning that subsequent bloodwork and CT scans were negative for any cancer in her body, Torrey knew she had homework to do.

Her oncologist told her two different pathology labs had independently confirmed her unusual biopsy results. He then insisted she begin chemotherapy immediately or she would measure [her] life in months, not years." Her intuition told her otherwise. She obtained copies of all her medical records, and began researching test results, terminology, and findings on the internet. She sought out a second-opinion oncologist with experience in treating her unusual form of cancer. Eventually she insisted her biopsy be sent to a specialist at the National Institutes of Health. When those results came back from the NIH three months after she first heard the word lymphoma", it confirmed her own findings. She didnt have cancer at all.

I never set out to prove I didnt have cancer," Trisha explains. I only wanted to find out what my options were. I knew I didnt have any of the symptoms that would have been expected for the aggressive lymphoma I was diagnosed with, so it only made sense to pursue more information."

So, in the span of 90 days, Trisha had gone from the understanding that she would likely be dead in months, to the realization that she had a very benign condition called panniculitis that probably would have gone away on its own if shed never had that original lump removed. How did she react? Anger, at first," she explains. Then relief, of course. And then, because Im very spiritual and believe that everything happens for a reason, I asked myself why God would have asked me to go through all that."

That soul-searching led to the development of a new Web site -- a tool for others who have been handed a difficult medical diagnosis for themselves or their loved ones. Called diagKNOWsis.org, it was built to hold others hands through the process of researching their medical conditions, reading medical reports, and learning how to ask questions of their doctors. There is no medical advice at the Web site, rather, there are guidelines and tools for helping visitors empower themselves to make better treatment decisions for themselves.

Having transitioned through the process herself, Trisha recommends patients approach their medical care in partnership with their doctors, rather than simply holding the high reverence they often hold. No doctor can know everything about every disease or condition," cautions Trisha. It only makes sense that we take responsibility for our own care and decision-making using our doctors and their recommendations as our foremost source of information, but not relying on them solely. There is a lot of good, understandable information out there. Its a matter of learning terminology and knowing how to find reliable resources. Those are the tools provided on diagKNOWsis.org ."

The site is available to anyone who wants to research medical information for themselves or their loved ones. Feedback and submission of additional resources are invited. Its use is free of charge. The site has been accredited by HONCode and its principles outlining excellence in healthcare information on the web.

For more information, log on: www.diagKNOWsis.org

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