Serene felt itchy.
It wasn’t the kind of itch you could scratch away. It felt deeper than that — almost as though it was coming from beneath her skin. “I could feel it inside of me, as though my blood was itching,” Serene recalls.
It was an unmistakable sensation that made the 26-year-old’s heart sink: “I just knew the cancer was back,” she says.
Serene had recently completed six months of chemotherapy for Hodgkin lymphoma and learned the treatment had been a success. She’d rung the bell. She’d reached what felt like the finish line. She was ready to get back to the life cancer had interrupted.
Instead, after just three months of believing she had no evidence of disease, Serene was faced with recurrence.
“The relapse and the second diagnosis were much harder than the first,” she says. “If the first treatment hadn’t worked, I wondered, what would happen now?”
A year earlier, when Serene first felt that distinct itching sensation, cancer had been just about the last explanation she would have imagined.
At 25, she was still building her adult life: She had finished school and was working alongside some of her five siblings at her family’s business in California. She pictured the decade ahead as one filled with career growth, relationships, and eventually a family. “I was just a normal 25-year-old,” she says. Serene also assumed she was in great health: She exercised, ate well, didn’t smoke, and had no family history that would make cancer feel like an obvious threat. She also knew her body well, so when the itching began, Serene knew something wasn’t right.
She repeatedly sought medical help, only to be given antihistamines and suggestions to change her sheets more regularly. “I kept saying, ‘There isn’t something wrong with my sheets; there’s something wrong with me,’” she recalls.
About two and a half months after the itching began, Serene discovered a lump on her neck and pushed for a biopsy. This time, she finally received an explanation: She was diagnosed with Hodgkin lymphoma.
The diagnosis was hard to swallow at first. “I didn’t feel sick,” she says. “I couldn’t understand how this had happened to me.” Initially, Serene kept the diagnosis relatively private, primarily leaning on her parents and siblings for support. “I didn’t want cancer to become the first thing people thought about when they saw me,” she says.
After six months of chemotherapy, she got the news she’d been waiting for: Her final scan showed no evidence of disease. “I was so happy,” Serene recalls. “I felt like my future was going to restart.” And for three months, it seemed like it had. Then came the itch. And this time, she knew exactly what it meant.
Upon her initial diagnosis, Serene became so overwhelmed that she largely followed the path laid out by her care team without question. “I think a lot of cancer patients just kind of go with what they’re told right away,” she says. “They’re hearing something for the first time and aren’t aware that there are options to choose from.”
The second time around, Serene vowed to ask more questions. She wanted to understand the treatments being considered, why her doctors recommended them, and what other options might exist. “I became much more involved in the conversation,” she says.
Her oncologist ultimately presented her with an option she had never considered: a clinical trial.
Before her relapse, Serene had heard the term clinical trial, but she didn’t really understand what participating in one meant. She held many of the common misconceptions patients have about clinical trials, so at first the idea of participating scared her: Would she receive a placebo? And perhaps most frighteningly, did being offered a trial mean her doctors were running out of other ways to help her?
“I assumed it meant I was at a stage where my cancer is so extreme or so unsolvable that this was all they could think of,” says Serene.
But this time, instead of saying yes right away, Serene asked questions about the investigational therapies being studied, what the potential side effects were, and what researchers already knew. She wanted to understand the reasoning behind what was being offered before she agreed.
Then came a conversation with her oncologist that helped crystallize her decision.
“I asked him to look me in the eye and give me his most candid recommendation,” she remembers. His answer was deeply personal: “He said, ‘If you were my own daughter, I would tell you to consider this clinical trial.’” For Serene, those words helped her make her decision to participate.
After committing to the trial, Serene learned that clinical trials are not a last resort: They can offer access to investigational therapies throughout a person’s cancer journey.
Unlike some trials, in which participants may receive a placebo, Phase 3 cancer clinical trials like the one Serene would join typically test an investigational therapy alongside standard care. By Phase 3, the investigational therapy has already undergone laboratory testing and earlier phases of clinical research to evaluate its safety. Clinical trial participants can also receive additional care, including specialized attention and monitoring from a dedicated team of doctors and nurses connected to the study.
Serene recalls being surprised at how closely she was monitored during her trial experience. Frequent lab tests, vital sign checks, and conversations with doctors and nurses helped her care team monitor her progress and manage side effects. During a month-long hospital stay for her stem cell transplant — which took place during the isolating days of the COVID-19 pandemic — she also received support from physical therapy and nutrition specialists. “I never felt like I was just a number in a study,” she says. “I felt like they truly cared about me and my success and my health.”
That attention didn’t make her cancer journey easy, but it helped make an extraordinarily trying experience feel less lonely. And despite days when she wondered how much more her body could take, Serene says she has never regretted her decision to participate. “I remember thinking, ‘I’m almost there. I’m gonna get through it,’” she says.
Today, Serene is 31 and has had no evidence of disease for five years.* When asked what the trial meant to her, she doesn’t hesitate. “It gave me the chance to focus on getting back to the life I had before cancer,” she says. Her experience fundamentally changed what the words clinical trial mean to her.
Serene is careful not to suggest that a clinical trial will be the right choice for every patient, or that enrollment guarantees a particular outcome. She also acknowledges that every trial comes with its own risks. What she wants patients like her to understand is much simpler: “Being eligible for a clinical trial doesn’t necessarily mean you’ve run out of hope,” she says. “It just means you have more options.”
For Serene, participation had a purpose beyond her. She still returns for optional follow-up appointments because she wants researchers to have information about what someone who received the investigational therapy looks like years later. “I love being a part of something bigger,” she says. “I want to give them as much information as I can.” She sees herself as someone whose clinical trial participation may contribute to what doctors know and can offer future patients.
Nearly six years after cancer first interrupted the future Serene had pictured, that future is moving steadily forward once again. When thinking about how far she’s come since her initial diagnosis, Serene wishes she could assure her younger self that cancer would not be the defining event of her life. “You’ll live again, you’ll travel again, you’ll work again, and you’ll go out again,” Serene says she would want her 25-year-old self to know. “Fast-forward six years, and your hair has grown back so long it almost hits your waist, and you’re celebrating your 31st birthday, and your life is continuing.”
The experience taught her plenty about how to live with cancer. But perhaps its most enduring lesson was about questions: to ask them and ask them early. “The more information you have,” she says, “the more choices you may have, and the more confident you can feel in whatever decision you ultimately make.”
If you’ve been diagnosed with cancer, talk to your doctor about all your potential options, including clinical trials, before making healthcare decisions. To learn more about cancer clinical trial options, visit cancerclinicaltrials.lilly.com.
*This is representative of one person's experience, and these results cannot be expected or guaranteed.
