A Personal Story

December 1, 2011 at 7:52 pm Leave a comment

 Elly Cohen is Program Director of BreastCancerTrials.org and a Senior Analyst with the Carol Franc Buck UCSF Breast Care Center. Elly was diagnosed with Stage 1 breast cancer in 1998 and after surgery received chemotherapy and hormone therapy. Below she talks about her experience in a clinical trial.

What trial did you participate in? 

I volunteered for a study that was comparing the effect of two types of support groups on participants’ emotional, mental and physical wellbeing. The control group took a more traditional group counseling approach while the experimental group added alternative activities such as yoga, art and dance therapy.  I was hoping to be part of the experimental group, but was randomized to the control.

Why did this trial attract you in particular?

I was not having much success with traditional cancer support groups, where the attendees varied from week-to-week. This trial appealed to me because all the women involved were recently diagnosed and more or less in the same situation as me – going through treatment or making decisions about treatment. Since it was limited to 3 months, I hoped that the participants would attend regularly (which they did) and I would get to know them on a deeper level.

How was your experience in the end? 

In some ways it hasn’t ended. There were five of us who met together for the entire 3-month period and despite my misgivings about being in the control group, it was a wonderful experience. We had a great facilitator and, although we didn’t know each other beforehand, we developed a close relationship over our shared breast cancer experience.  Over the 13 years since the trial ended, we have helped each other cope with recurrences and several of us still get together on a regular basis.

Did they ever tell you which group had the better results?

After 12 years, they still send us follow-up questionnaires. The investigators have told us that the results revealed that each group scored better, that is showed improvements, on subsequent analyses of wellbeing but in different ways.

Is that your only personal experience of clinical trials?

No, I almost participated in another trial studying whether women with early stage breast cancer would have a lowered risk recurrence if they took Femara® (an aromatase inhibitor) after 5 years of tamoxifen compared to tamoxifen alone. But as I was preparing to enroll in the trial, it was stopped because the first reported results convincingly showed that Femara® taken after tamxoxifen was superior to tamoxifen alone. In this trial, the control group received a placebo after tamoxifen, since receiving no therapy was the standard of care at the time. After they stopped the trial, my oncologist prescribed Femara®, which I continued to take for 5 years.

What would your advice be to women who are thinking about entering a clinical trial?

You should make sure you understand the purpose of the trial and what would be expected of you as a study participant.  If this is a treatment trial, ask the investigator to review the benefits and risks and how these compare to your other treatment options. Rules regarding insurance coverage for trial participants vary from state-to-state so it is important to confirm with your carrier that it will cover any medical cost not covered by the trial sponsor. Most importantly, make sure that you feel comfortable with the research team. Remember you are volunteering to be a study participant and that it is your right to withdraw from a trial at any time and for any reason.

Editor’s Note: BCT provides a list of questions to ask a research site when considering trial participation.

Entry filed under: Personal Stories. Tags: .

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