Friday, April 19, 2013

One woman’s fight to find cures for neuroendocrine cancer

Time=Lives Story of the Week: Catherine Cooling Davis

Catherine Cooling Davis is 28, newly married, getting her MBA, and living with metastatic neuroendocrine cancer. But, she’s not letting this life-threatening diagnosis stop her from being her own best advocate in the face of uncertainty.

Neuroendocrine tumors (NET), most recently in the news as the type of cancer that killed Steve Jobs, is slow-growing and can begin anywhere in the body that has neuroendocrine cells. Although these cells exist throughout the body, NET are most commonly found in the gastrointestinal tract and lungs. More than 11,000 people are diagnosed with NET each year – a number that is growing by five percent annually.

Medical research is important when it comes to NET because most patients are only diagnosed in the late stages of the cancer once it has metastasized. In Catherine’s case, her diagnosis didn’t come until her cancer was in stage four, forever changing her busy life. However, faced with endless appointments with a series of doctors, Catherine knew she had to take her treatment into her own hands. “Since my diagnosis, I have traveled to meet specialists all over the country,” she said. “They have no better idea what to do with me than I know what to do with myself. Each of the specialists has a strategy, none are the same, and all say that the other doctors' strategies are also not wrong.”

"As terrifying as it is," she says, "I have to be my own best advocate. I have to choose the medical plan that I feel is best for me."

Catherine chose to have surgery to begin removing multiple tumors from her liver. In addition to this, she is searching for answers to many of her unaddressed questions. “I don't know how long I can live with this disease. I don't know how fast it is growing, how long I have had it, or how long I will continue to feel as good as I do,” said Catherine. But, she has hope. She believes a potential cure for this deadly cancer has been developed but sits idle in a research lab at Uppsala University because it cannot currently be patented by the company that owns it. So, Catherine and her friends and family began fundraising to provide money and support for the researchers to take the drug into phase 1 clinical trials.

To read more about Catherine’s story, visit Let’s Cure Neuroendocrine Cancer, or visit Catherine’s Time=Lives story page

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