Ending Cancer's Information Lottery

In cancer's information lottery, there's no cash bonanza and you may never be certain that you've won or lost. Here's how it's played:

Following a cancer diagnosis by your local doctors, you're sent to more specialized doctors. Will they be up on the very latest treatments and therapies for your specific cancer?

Will you even know if they aren't?

Congratulations, you're playing cancer's information lottery. Luck is on your side if you happen to fall into the hands of doctors who know either the latest, or the best, treatments.

THE EVIDENCE

There is peer-reviewed proof of the existence of the lottery, albeit indirect.

Take the September 2009 findings of Dr. Fausto R. Loberiza of the University of Nebraska Medical Center in Omaha, published in the Journal of Clinical Oncology. Dr. Loberiza and friends concluded that, in and around Nebraska, lymphoma patients from urban areas treated at urban, university-based medical centers faired substantially better—meaning, in sum, that they lived much longer—than lymphoma patients in rural areas getting treatment at community-based medical centers during the same time frame (1982-2006).

Or take the January 2010 findings published in the journal Cancer by University of California researchers, which examined men receiving treatment for prostate cancer in a five-year period. If a man was treated at a county (i.e. public) hospital, he was much more likely to go under the knife; if a man sought treatment at a private hospital, he was much more likely to receive hormone therapy, radiation, and/or chemotherapy. Big difference, even though tumor characteristics between the two groups were similar.

THE UNCERTAINTY

Intuition tells us that the information age cancels out the information lottery, but intuition is wrong. In fact, as it is, the web is only making the lottery worse.

And by worse I mean it contributes to the anxiety and uncertainty already suffocating the newly diagnosed cancer patient. It also favors the Suzanne Somers-sponsored quacks who wait like vultures as desperate patients bounce from progressively less credible web sites, looking for that little-known treatment option they believe must exist because modern medicine sells us on the notion that the latest and greatest is out there, somewhere. The web is so enormous that if you look long enough you can always find someone willing to tell you what you want to hear.

Even if it's costly, full of quackery and contrary to good medicine.

BENDING THE ODDS IN YOUR FAVOR

How can you better your odds of winning the information lottery?

- Get a second opinion from a specialist, to hell with worry over insulting your current doctor.

- Search Google Scholar to see where and what this or that specialist has published on your lymphoma subtype.

- Finally, contact your health care provider—or merely ask your doctor—if they are connected to caBIG, the National Cancer Institute's Cancer Biomedical Infomatics Grid.

caBIG is a massive and long-overdue project that seeks to make available to connected oncologists all the data from all the people diagnosed with cancer in the US (minus their identities), their treatments and the outcomes of those treatments. It's nothing shy of the collected knowledge and experience of the nation's cancer specialists all in one place. Every US oncologist should be connected to this growing grid, as it stands the best chance of eliminating cancer's information lottery for everyone, for good.