How I Took Charge of My Cancer Care and Found a Clinical Trial That Was Right For Me

Tzvia Bader is a stage IV melanoma survivor and the CEO and co-founder of Trialjectory, an AI-powered decision-making platform that connects cancer patients to advanced treatment options and helps to accelerate clinical research timelines. You can follow Tzvia on Twitter. View Tzvia’s disclosures.

My journey with cancer started long before my own diagnosis. In 1998, my mother was diagnosed with non-Hodgkin lymphoma, which unfortunately did not respond well to treatment. It was during my mother’s cancer journey that I first discovered the vast ecosystem of clinical trials. However, by the time we found a potential clinical trial option for her, it was too late.

Fourteen years later, I found myself in a familiar position when I was diagnosed with stage IV malignant melanoma. Fearing history repeating itself and trying to come to grips with the all too real prospect of my 3 young daughters losing their mother, I dove headfirst into mapping out my own treatment plan. Although the odds were stacked against me, I had so much to fight for and was determined to control my cancer journey.

Working to find the best treatment for me

I started my treatment in a large community center in New Jersey. Still, 3 surgeries later, my cancer continued to progress. I was hopeful we’d be able to find a treatment that worked for me at this center, but that wasn’t the case. I was presented with only 1 clinical trial as a potential treatment option. During my conversation with my oncologist at the time, I remember thinking, “What do you mean, only 1 trial?” With my cancer progressing and knowing that there were so many clinical trials happening around the world, I found it inconceivable—and unacceptable—that there was only 1 viable treatment option for me.

At that moment, I realized that if I wanted more options, it was up to me to help discover them. I began researching and educating myself, and I determined that my next best option was to move my case to a larger cancer research center. At first, I felt relieved. I had put in a lot of work and was scheduled to meet with several of the most accomplished doctors who were dedicated to cancer research and who I hoped would be able to provide me with greater access to life-saving solutions. Thankfully, my new oncologist gave me 3 different options: one option was to try an approved cancer drug, and the other 2 options were to participate in different clinical trials.

At the time, I was still trying to fully comprehend the role of clinical trials in my treatment journey. The doctor explained how these studies demonstrated potentially better outcomes based on my diagnosis. Because time was not on my side, I jumped in with both feet.

The first treatment option I chose was to receive a targeted therapy drug as part of a clinical trial, which lasted several months before tests showed that the disease had continued to spread. Then, I switched to a clinical trial that included treatment with a combination of a proven immunotherapy drug and a virus vaccination. At first, the cancer responded fairly well to this treatment. However, after completing the treatment phase of the clinical trial and attempting to transition back to my “normal” life, my scans showed a recurrence.

At my wit’s end, I asked my oncologist a simple but direct question: “Are you offering me the best treatment options available or just the best that this hospital has to offer?” This question led to the discovery of 2 very important points. Unfortunately, I learned that 1) I was only being offered clinical trials available through my treatment site, and 2) I had been offered only the clinical trials with which my oncologist was directly involved. It was then I decided that I wanted to cast the widest net possible, so I began my search to uncover all options available to me.

Taking charge of my care

Through my own tenacious research, I identified a new clinical trial option and presented it to my doctor. My enthusiasm for this new potential treatment was immediately shot down when my oncologist informed me that he did not have any seats left for this specific clinical trial and preferred for me to enroll in a different one. This opened my eyes to some of the flaws in the current clinical trial landscape for patients. I then decided to stay with an approved drug, but that didn’t last long either.

I knew that I had to make another treatment decision, which led me to find a much more aggressive treatment option available through a new clinical trial. My oncologist was uncertain about this option and suggested a different approach before I resorted to this more aggressive trial. But at that point, I knew I had to make a life-changing decision: to do what I felt was right for my body and diagnosis. With that, I went forward with the more aggressive treatment option.

Looking back, what is so important about this scenario is not that I chose 1 treatment option over another. Rather, it was the fact that when I had several options, I learned how important it was to understand what those options were and to make the decision that was right for me. It is now nearly 5 years later, and I am so thankful I made that decision.

What I learned about advocating for myself during cancer

When comparing my cancer journey to my mother’s experience more than 20 years ago, 2 fundamental things have changed. First, there is now greater access to information that allows people with cancer to better understand their diagnosis. And second, there are significantly more treatment options available today that are yielding better outcomes for people with cancer, many of which are available through clinical trials. Unfortunately, what has not changed enough is that many people with cancer are still not an active part of their treatment decision-making process.

For those facing a cancer diagnosis today, there has never been a more important time to demand an active role in your own treatment decisions. The COVID-19 pandemic certainly taught doctors, patients, and caregivers that this is vital. However, in order to truly be part of treatment decision-making, I learned how important it is to be well informed about your particular treatment options. Beyond this, you should also be willing to bring questions and potential treatments forward to your doctors and remain persistent in determining the best course of action for your specific diagnosis. I encourage all people with cancer to play an informed and active role in their treatment journey. An informed patient is an empowered patient, and an empowered patient has the confidence to take a more active role in decisions about their care.

What to know if you are considering joining a clinical trial

Before my own cancer experience, I wish I had known that I had the option to participate in clinical trials, even before moving forward with my initial standard-of-care treatment. After my diagnosis and a lack of direction from my first oncologist, I was determined to find a better alternative to what I was given. It took a lot of self-exploration and research to truly understand the clinical trial landscape. In hindsight, I wish I had known the complexities around finding the right option to fit my specific diagnosis.

Beyond this, I believe it is important for people with cancer to know that participating in clinical trials can not only potentially serve as a life-saving treatment for you as the actual participant, but also that you are helping to further advances in treating cancer that could help others in need.

During the already difficult time of navigating a cancer diagnosis, I found out how important it was to recognize that the key to treatment may lie beyond the standard of care. I learned that you must be willing to seek other treatment options, such as clinical trials, to ensure you are aware of all potential treatment options available to you.

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