New Data Needed – 10

Laurie’s research and search for knowledge teaches us that the 40,000 women who die annually can’t wait for FDA approval of trials, etc., nor can the estimated quarter-million Americans waiting in the wings. Apparently we really don’t know because none is required to report a metastatic diagnosis. Even the death certificates normally state other symptoms such as respiratory failure, anomia, cardiac difficulties, etc. That means the metastatic breast cancer is not counted as the cause. Uncounted entities usually don’t get much attention. So it is with metastatic breast cancer, I fear.

“We know now that breast cancer is not one disease. What works for one person might not for another. There is no one “cure.” We are, each in effect, one person clinical trials. Yet the knowledge generated from these trials will die with us because there is no comprehensive database of metastatic breast cancer patients, their characteristics and what treatments did or didn’t help them,” said Laurie. “In the Big-Data era, this void is criminal.”

Laurie felt that in the era that data abounds everywhere, the personal histories of individual treatments that helped or did not help, would be extremely helpful to women who were trying to make decisions about their cancer treatment.

I believe that we are all individual; I believe our Creator gave us all that we need to live our lives in an optimum way. Each one of us must find where our help lies.

The Susan G. Komen organization is the most powerful one in the breast cancer funding. It has raised millions and millions of dollars. Very little, Laurie stated, goes to research. Almost all of it goes to “awareness and early detection.” As stated earlier, all those who die and suffer each year with metastatic breast cancer are uncounted statistics who know otherwise. Virtually all were detected early and received early treatments. Laurie felt that the awareness campaigns are painfully out-of-date.

“We need people–patients, doctors, scientists, politicians, investors, families–to make a fresh start. we must create a new system of data collection and an open, online broad-range data base about patient histories that will provide information valuable to those who’ve been given a death sentence. Patients as well as doctors must contribute,”
said Laurie.

These were important words, Laurie. I wish I could have known you. We would have started that data bank. I hope with your words and this writing, something will emerge. I know my situation is unique. But I believe each one is.

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