‘Why Should I Participate?’ Asking Myself and My Doctor Questions About Joining ISPY2
In 2015, Living Beyond Breast Cancer blogger Judy Weinstein wrote about her experience in the clinical trial ISPY2. In her follow up post for Breast Cancer Trials Matter to You, Judy describes her process for deciding to participate.
When faced with a cancer diagnosis, life gets jolted into perspective in a flash. Suddenly one thing and one thing only matters – your life. Every decision you make, every step you take to rid yourself of this awful disease is with the singular goal in mind, which is to live longer. After all, you still have places to go, people to see and things to do!
Your doctor is your lifeline towards achieving this goal. He or she has information about your specific disease and possible treatments. Your doctor has the results of all the tests you take: blood work, x-rays, MRI’s, etc, and more importantly this provider can interpret the results. Your doctor has years of experience and may have access to clinical trials.
Some people think of clinical trials with the following scenario in mind: You have already tried the standard treatments and they failed, so deciding to join a trial may be your best or only shot at achieving your goal to live longer.
That may be true for some, but not all people diagnosed with early-stage or metastatic breast cancer enroll in research studies as a last resort. If you are like me and you are eligible for a clinical trial BEFORE you start any treatment, trials become another treatment option to consider. In that case, deciding whether to participate can be quite complex.
When I was offered to join the ISPY2 clinical trial, I was mistrustful. MY goal was clear. To live longer. I wanted my doctor’s goal to be the same. Plain and simple. I wanted to live to a ripe old age and I wanted her to be my means towards that goal. The potential for participating in a clinical trial was muddying the waters!
As a trained social worker and mother of three, I am often putting the needs of others first. But this was different. I had to think of me first.
In order to this, I asked myself and my doctor a series of questions that I’d encourage anyone considering a trial to ask.
The first thing I asked was WHO is benefiting from me being on this trial? This led to sub-questions like
- Would my doctor get paid more?
- Would the hospital get paid more?
- Would the drug companies get some sort of kickback?
The next question was WHAT did being part of a clinical trial entail? Digging deeper for what that meant, I also asked
- What would my course of treatment look like as compared to a standard treatment?
- What testing was needed to start?
- What type of additional monitoring would be necessary and would that be a positive or negative as I went through my treatment?
- And the biggest question of all…..WHAT IF the trial drug didn’t work?
I then asked WHY should I do this trial? I understood that research is necessary to further advance breast cancer treatment, but WHY should I risk what is known for what is less known?
My final question was HOW am I possibly going to make this decision?
The answers to this last question came as my doctor, my husband and I slowly, carefully and patiently went through each and every question.
I was able to be screened for the trial while I pondered this difficult decision. It was admittedly exciting for me to learn that part of the screening involved an in-depth study of my particular tumor type. Instead of the generic treatment I would get by not doing this trial, a specialized team was studying my tumor.
I began to understand that no one was getting kickbacks from me being on this trial. Again, this trial, called ISPY2 was a collaboration with several drug companies, researchers, heath organizations and patient advocates. I started to trust that this study was designed to give ME the kickback - a successful treatment outcome.
I assessed that for me, one who tends to worry a lot, I would probably like the additional monitoring that came with being part of a trial. As it turns out, I had an MRI after my very first treatment with the trial drug. My tumor had almost entirely disappeared. This gave me much hope throughout the rest of my treatment. I would not have had that benefit if I were not in the clinical trial.
My doctor assured me that if for some reason the trial drug didn’t work, we could always go back and do the standard course of treatment. That was a safety net for me.
Finally…. once I found out to which drug I was assigned, I knew that while the drug may be little-known, its results were promising. This drug has worked for women who live with metastatic disease, and researchers were testing it to see if it also works to target a particular type of tumor.
Cancer is a scary diagnosis and has a somewhat unpredictable outcome no matter what course of treatment you endure. When your doctor offers you a clinical trial as an option, making the decision to participate seems daunting. Once I dove into being part of ISPY2, there was no looking back. For me, I trusted that my doctor's recommendations because she is top in her field. I felt confident that I was in the hands of many capable doctors and researchers who all wanted to help me reach my goal of a long and healthy life. From that vantage point, the decision was clear.
I feel proud of my part in the cutting edge of future breast cancer treatment. At the end of my year-and-a-half treatment I had what was considered a pathologic complete response, meaning no active cancer cells were present. As far as cancer goes, it doesn’t get any better than that.
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