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Sharing Our Stories, and Our Data, May Save Lives

By Heather Millar

clinical trial

When it comes to cancer research, you might say that I’m an outlier. Since I was diagnosed with breast cancer 18 months ago, I think I’ve participated in at least four clinical trials: one surgical trial that took a little extra tissue when I had my lumpectomy, a trial about “chemo brain,” a trial tracking the medical and emotional side effects of chemo, and a trial that seeks to help patients save their hair during chemo.

I’m not at all the norm. Estimates vary, but only 4 to 7 percent of adults with cancer participate in cancer research. In contrast, nearly 60 percent of children with cancer do. Experts have lamented this forever. Ten years ago, the National Cancer Institute was trying to identify the barriers to patient participation in research trials.

They listed the working theories:

• Many patients don’t have access to cancer research centers, or they may not know about current research.

• Some patients may be afraid to deviate from “standard care.” They’re afraid of becoming research guinea pigs.

• Others may be concerned that sharing their medical histories and data might result in a loss of insurance coverage.

• Both physicians and patients fear the “loss of control” that participating in a trial may bring. Are you getting the real drug or the placebo? That question may just create too much anxiety for some of us.

Yet, here’s the thing: We’re coming up against the limits of what cancer screening can do to prevent deaths. Sure, improved screening saves lives. In fact, I’m pretty sure it saved my life. But when you go beyond the personal to the broad scale, improved screening also results in over-treatment, treating early stage cancers that may never have grown bigger. This may result in needless expense. Concerns about these issues have led to the recent controversial changes recommending less aggressive screening for both breast and prostate cancer.

Cancer, as we all know, is not one disease, it’s hundreds of diseases. My breast cancer will not be like your breast cancer. Your Dad’s lung cancer will not be the same as his work colleague’s melanoma. Put another way, you may not need to treat a small cancer with a sledgehammer. Or, then again, you might. The big question is: How do doctors know which is which?

As a recent overview from the National Cancer Institute, puts it, the “cellular characteristics” of your cancer will be “an important predictor of cancer behavior.” In human speak, this means: How disordered your cancer cells are, what genes they switch on, what hormones they react to—all this will determine if your cancer spreads like wildfire and resists all attempts to control it, or, if it grows slowly, responds to treatment and goes into remission.

In many ways, your cancer is as personal as your fingerprint.

Last week, I attended the first public forum of the Athena Breast Health Network. There, I listened to about a dozen experts talk about how personalized treatment—analyzing the particular genetics and biological markers of each cancer—will be the future of cancer care.

And how do these doctors propose to get there? With data, data, data. And who needs to give them that data? We, the patients, do. Or, at least, some of us do.

The Athena project brings together the five University of California campuses with medical centers: UC-San Francisco, UC-Davis, UC-Los Angeles, UC-Irvine and UC-San Diego. They will pool their resources to track 150,000 women, both those who are healthy and those affected by cancer. Then, they will organize the data in a consistent way so that many researchers can try to determine what makes one cancer deadly and another one treatable.

Athena hopes to do for breast cancer what the famous Framingham Heart Study—which tracked 5,000 people and two subsequent generations over decades—did for cardiac care: Come up with things that tag cancers as high-risk. For instance, Framingham taught us that high cholesterol is bad for your heart. Might there be another simple marker for cancers?

Athena also hopes to develop a structure and a model that can be used to combat other cancers and other diseases. Already, UC faculty members are discussing the possibility of a similar network for prostate cancer. A Swedish project, called KARMA and directed by Stockholm’s Karolinska Institute, is now recruiting 100,000 women to be tracked for breast health.

Obviously, most people do not live in California or Sweden, but there are other ways those who want to do so can pitch in:

An Oakland, California website matches breast cancer patients nationwide with clinical trials that might be appropriate for them.

The Love/Avon Army of Women plays a similar matchmaker role between women and breast cancer researchers.

The National Cancer Institute features a search page that lists more than 10,000 clinical trials currently accepting participants. You can search by condition, stage, zip code, hospital, or institution.

Cancer is complicated. It’s not only up to doctors and biologists to find the cure; it’s a job for all of us.

Photo: Fuse
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