Because Someone Else said, “Yes” | Participating in Research Studies

I’m really enjoying being a part of the patient advocacy group at Georgetown. Each meeting, we discuss many topics, and I always enjoy when the clinician who is part of our groups talks about the new clinical trials and research studies  that are available for breast cancer patients at Lombardi. Frequently, clinicians and researchers will ask us to help them improve recruitment for their studies.

People who are diagnosed with late stage disease are frequently eager to participate in a study– a clinical trial– with the hope that helping test some new drug will cure them. Of course, that’s always a possibility. And for that hope, they will usually gladly go through extra biopsies, blood draws, hair pulls (not even kidding!), and endless paperwork.  All those extra steps are a much harder sell to a woman diagnosed with early stage disease, whose participation in the study won’t get her anything other than standard of care and all that extra stuff to allow researchers to amass data.

But a woman in our group at Georgetown had been speaking to a group about clinical research studies, and something that she said really stuck with me. “I’m here because someone else said, ‘yes.’” Such a simple, profound statement. Breast surgery has come a long way, and the introduction of Tamoxifen, aromatase inhibitors, and Herceptin, which target specific tumor types, have improved treatment options and survival for many patients. Still, some breast cancer patients will recur after treatment, and figuring out who will recur and how to prevent that recurrance is a growing area in research. There is a lot of excitement about the new “Georgetown Method” which could allow doctors to grow a patient’s actual tumor cells quickly in the lab and treat them with a variety of drugs to see which treatments will be most effective for that specific patient, preventing recurrance and substantially increasing long term survival. (Read about it in the Lombardi Magazine starting on page 10.) Yet, for all these advances, and for all those that are to come, patient involvement, often without any promise of personal gain, is so crucial.

Especially for those receiving treatment at a teaching hospital, there are many opportunities for participation in research studies. Right after being diagnosed with cancer, a patient has so many decisions to make, appointments to make and keep, papers to fill out.  And since many studies seem like a lot of work for the patient for mere data collection without the promise of any wonder drug, it is easy to see why a patient would be reluctant.  If there’s ever a time to be selfish, it’s when you have cancer, right? And yet, many women with breast cancer have chosen to put away their cancer card and give up that right to be selfish. Their willingness to participate has given doctors invaluable information that continues to impact the way patients are treated. So to those women who have taken the time, dealt with all the extra assaults to their body, I say thank you. I am here because they said, “yes.”

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