Why I Chose a Clinical Trial
When I was diagnosed with metastatic triple-negative breast cancer in 2017, no one was talking about 10-year survivorship.
Back then, the conversation was often measured in months and years, not decades. Immunotherapy was still emerging. Many of the treatments available today didn't exist. Precision medicine was not yet part of routine conversations for many patients. The idea that someone with metastatic triple-negative breast cancer could be approaching a 10-year survival milestone was not the expectation—it was the exception.
Yet here I am.
As I prepare to cross that threshold, I often think about the decisions that helped me get here. One of the most important was my decision to obtain biomarker testing which ultimately led me to participate in a clinical trial.
Those choices didn't come from blind optimism. It came from asking questions, understanding my options, and being willing to consider a path that many patients fear because they don't fully understand it. Believe me, I understood the dark and complex historical perception that people of color have when it comes to hearing the words “clinical trial”. But given just a 4% chance of survival I had to push back my fears and embrace the unknown, grab the opportunity and make an informed decision.
Ten years later, I am still here. And that is why I believe every patient deserves the opportunity to learn about all of their treatment options—including clinical trials.
The decision did not come easily. Unfortunately I had to recognize medical bias, walk away from my original oncology team and go out into the world, on my own to find access to the tools needed to set myself up in position to be a candidate . So what was the game changer, the key steps I took before entering a clinical trial:
Biomarker Testing - NGS (next generation sequencing) using a tissue sample from the last biopsy I had. The testing indicated that I had picked up several mutations (none of which were targetable at the time, but indicated that I was a part of a very special subset).
Tumor Mutational Burden Score - a biomarker test that immunotherapy might be a viable treatment option
The clarity - Having access and undergoing biomarker testing may open a door a patient might not have had,. A report that follows a biomarker test may identify that a patient has a targetable mutation that an FDA approved drug is already treating and instead of a trial, a doctor may recommend the newly identified treatment option.
Early engagement - I looked into clinical trials as a treatment option very early on in my metastatic treatment journey. I realized then that the window of opportunity can:
Be very narrow - based on a patients, health and other exclusionary criteria (such as a co morbidity)
Over treatment - I was super aware that thinking about a clinical trial instead of opting into another “standard” treatment option allowed me to keep my clinical trial “candidacy” broader. Some clinical trials can be restrictive in the requirements and the cold hard truth can be “If a patient has had to many lines of treatment, they can be excluded from a clinical trial”!
Lastly, having access to all of the biomarker testing put me in position to make medical history, to join a trial that did not target triple negative breast cancer exclusively, but instead trained my immune system (and my wonderful but tired fighter cells) to recognize the cancer cells and kill them.
My story is not a promise of what will happen for every patient. Cancer is complex, and every person's journey is unique. But my experience has taught me that patients deserve access to information, biomarker testing, and honest conversations about all available treatment options—including clinical trials.
If there is one thing I hope you take away from my story, it is this: don't wait until you feel out of options to ask about clinical trials. Ask questions early. Learn about biomarker testing early. Understand your options early.
Because sometimes the decision that changes everything begins long before you ever sign a clinical trial consent form.
If you or a loved one have questions about biomarker testing, clinical trials, or navigating a cancer diagnosis, Karen's Club offers free one-on-one patient navigation sessions to help you better understand your options and make informed decisions about your care.
Hugs.
Karen
