Survivor Spotlight: Jessica Acosta on Rectal Cancer, Lynch Syndrome, and Living with Intention

Written by Melissa Schenkman, MPH, MSJ

In this compelling conversation, we speak with Jessica Acosta, a rectal cancer survivor diagnosed at age 29, about her journey from symptoms to survivorship. Her story highlights the urgent need for awareness around early-onset colorectal cancers and the life-saving power of genetic testing. She opens up about the mental, physical, and emotional toll of her diagnosis—and the hope that followed.

Can you tell us a little about yourself?

Jessica: Sure! My name is Jessica, my pronouns are she/her. I live in San Diego with my wife. We’re originally from New Jersey but escaped the winters for California. Pre-cancer, I worked in human resources, but the experience has really shifted my perspective and I’m working toward a career that aligns more with my passion and purpose.

Before your diagnosis, what role did health play in your life?

Jessica: I had always had medical anxiety and was very aware of my body, especially after COVID. I was a bit of a germaphobe, always cautious. But I was also used to having symptoms downplayed or brushed off as stress or anxiety, so I often second-guessed myself.

You were diagnosed with rectal cancer at 29. What led to your diagnosis?

Jessica: It started with genetic testing. My wife and I were thinking about starting a family, and my gynecologist recommended it due to my family’s cancer history—my mom had breast cancer at 36. I expected to hear something about BRCA, but I was diagnosed with Lynch syndrome instead. That threw me. I was told to get a colonoscopy at 30—but at the time, it didn’t seem urgent.

I started experiencing symptoms that were hard to ignore—bloody stool, stomach pain, constant trips to the bathroom. I finally saw my doctor in summer 2023, and despite my symptoms and Lynch diagnosis, she said it might be IBS. I wasn’t satisfied with that answer.

I told the gastroenterologist, "I have Lynch syndrome, I’m not comfortable assuming it’s IBS." That’s when she agreed to schedule a colonoscopy before I turned 30. I honestly told her I’d pay out-of-pocket if needed—I just couldn’t live like that anymore.

When I woke up from the procedure, the doctor came down to my level and said, “Good thing we did this early.” She showed me the tumor on the screen, and I was officially diagnosed with stage 3 rectal cancer. My wife and I were both in shock.

What treatment options were you offered?

Jessica: Immunotherapy, surprisingly. My oncologist said that because my tumor was mismatch repair-deficient—a common trait in Lynch patients—I was eligible for a newer immunotherapy treatment that had a 100% success rate in clinical trials at Memorial Sloan Kettering.

I received infusions every few weeks. The side effects were minimal—some fatigue the evening of treatment, but otherwise I felt okay. After my fourth infusion, the mass was gone. No chemo. No surgery. I didn’t lose my hair. My body responded fully.

Jessica ringing the bell , a ritual marking a major milestone in her cancer journey, completing her treatment.

How did this affect your mental health?

Jessica: Survivor's guilt was a big part of it. I looked “normal,” and my experience was easier than many others going through chemo. I struggled with why I got to have this option when others didn’t. But I’ve learned it’s okay to feel both gratitude and guilt.

Survivorship has been harder than treatment in some ways. The structure of treatment is gone, and now there’s the emotional work, the scans, and the uncertainty. I get more scans now for different cancers due to Lynch. The community has helped immensely.

Was it difficult finding community?

Jessica: At first, yes. I was often the youngest person in support groups. As a queer woman, finding culturally competent support was also a challenge. But groups like Fight CRC and Cheeky Charity helped. What was missing was anyone talking about immunotherapy—I felt alone in that aspect.

How has your perspective on life changed?

Jessica: I live more intentionally. I ask, “Why am I doing this? Who is this serving?” I left my HR job and am still figuring out what’s next. Work-life balance is no longer optional—it’s a necessity. I’m setting boundaries and reevaluating everything.

What’s something you wish more people knew about young-onset colorectal cancer?

Jessica: That it’s not our fault. Stop asking if we smoked or drank too much. I was 29. I didn’t do anything “wrong.” Genetics, environment, and other factors play a role. The stigma and blame help no one. Awareness and early screening are what matter.

I hope my story helps someone speak up for themselves. I want people to consider genetic testing, to trust their instincts, and to ask hard questions. If I hadn’t self-advocated, I might not be here. If my story encourages one person to push for a colonoscopy, it’s worth it.

Want to hear more of Jessica’s story? Check out her episode on the YMyHealth podcast!