Walking the Walk: My Journey Into a Lynch Syndrome Vaccine Trial

I was sitting at my desk when, “it” appeared on my computer screen, an opportunity so unexpected and life-changing that it felt like stumbling across the perfect dream job… or winning the mega lottery. But as with any incredible opportunity, I knew I would have to apply. I knew I would have to try. And something deep inside told me it would be worth it, not just for me, but for my entire family.

Discovering a genetic risk for cancer

Back in 2016, a genetic test revealed that I carried an MSH2 mutation associated with Lynch syndrome. The results were blunt: I had a significantly increased risk of developing multiple cancers throughout my lifetime, including a 60% chance of endometrial cancer.

I took action immediately, choosing to undergo a total hysterectomy to reduce those risks. Even that proactive decision brought its own surprise, the biopsy revealed stage 1A endometrial cancer. The news surprising both me and my gynecologist, but thankfully, surgery was enough.

Living with the reality of Lynch syndrome

The following year after visiting my dermatologist, brought yet another cancer diagnosis and two inches of basal cell carcinoma removed from my back, further proof that Lynch syndrome was not content to sit quietly in my DNA. It was active. It was relentless. And I needed to be just as relentless in return.

Finding hope in Lynch syndrome clinical trials

So, when I came across a clinical trial listing on ClinicalTrials.gov, everything in me lit up. It was a Phase IIb trial called Tri-AD5, designed specifically for people with Lynch syndrome.

According to the site, the Tri-AD5 vaccine, combined with N-803, is intended to train the immune system to recognize and destroy precancerous and cancerous cells before they take hold. Only 14 locations were selected, and only about 189 participants would be considered. And one of those locations was right here in my Chicagoland community.

Advocacy through participation and diverse representation

That’s when it hit me, I may not have won the lottery, but I had certainly found my ticket. For more than a decade as a patient and research advocate, I’ve committed myself to educating communities about genetic testing, clinical trials, and survivorship. I’ve participated in small studies on diet and exercise and always said that if a meaningful clinical research study became available to me, I would step forward.

Advocacy isn’t just about talking the talk, it’s about walking the walk. So, I reached out directly to the Principal Investigator and expressed my interest, not only as a potential participant but as someone willing to serve, volunteer, or support the research team in any way needed.

In October 2022, I received the news: I had been accepted into the trial. I was overjoyed. I told everyone, because representation matters, and showing up as a minority in clinical research is more than personal pride. It is necessary. Without diverse participation, clinical trials risk creating treatments that are less effective, or even unsafe, for underserved communities. Equity in research begins with inclusion, and I wanted to be part of that change.

A future focused on cancer prevention

Now, in 2025, two and a half years since joining the study, I feel strong, hopeful, and deeply committed to what this trial may mean, not only for people with Lynch syndrome but for the future of cancer prevention altogether. Imagine a world where fewer people must endure chemotherapy, where proactive vaccines stop cancers before they start. That world may not be far away.

I’m often reminded of a quote by Charles Swindoll: “Life is 10% what happens to us and 90% how we react to it.” My reaction—my 90%—has been to meet cancer with action: participating in clinical trials, championing genetic testing, and raising awareness about the power and responsibility of survivorship.

I may not have won the lottery in the traditional sense, but I have collected something far more meaningful: the chance to shape my future, my children, and grandchildren’s future, and help shape a better future for others. Now, I simply intend to live long enough to enjoy my winnings.