When people hear about conferences like ASCO GI, they often think of charts, statistics, and clinical trial results. Those matter deeply. But for patients and caregivers, what matters just as much is whether the science reflects real lives and creates real opportunities for more time.
This year, two Fight CRC Research Advocates attended ASCO GI to ensure lived experience was part of the conversation. One advocate came as a caregiver. One as a colorectal cancer survivor. Together, they listened not only for promising research, but for whether the voices of people living with cancer were being centered in how that research is designed, discussed, and delivered.
Across sessions, one message came through clearly. Better care begins when patients are seen as whole people, not just outcomes.
Patients Are People, Not Just Outcomes
One of the most impactful sessions at ASCO GI was led by Sydney Towle, a young survivor of stage IV cholangiocarcinoma, who spoke candidly about navigating cancer as a young adult.
She emphasized the importance of mental well being alongside physical side effects and spoke about collaboration between clinicians, patients, and caregivers. One statement captured the heart of her message:
“Vulnerability is a superpower. By sharing, we make others and ourselves less alone.”
That message resonated strongly from both caregiver and survivor perspectives. Cancer can be isolating at any age, but for young adults, it often collides with major life transitions like careers, relationships, and future plans.
For caregivers, isolation can be just as real. Supporting a loved one through treatment often means quietly managing fear, responsibility, and decision making while trying to stay present and steady for someone else. During the pandemic, that isolation was even more pronounced. Many appointments happened virtually, and caregivers were not always able to be present for treatments, surgeries, or critical conversations.
For survivors, being seen as a whole person also means knowing that emotional health, uncertainty, and life beyond scans matter just as much as what shows up on imaging.
As Fight CRC Research Advocate and colorectal cancer survivor, Daad Abighanem, shared after attending ASCO GI:
“Attending ASCO GI as a survivor was incredibly powerful. Hearing how tools like ctDNA could help detect disease earlier and guide treatment decisions made the science feel personal. For so long, treatment felt limited, but seeing progress in targeted therapies and personalized approaches was a reminder that it’s not just one option or nothing anymore. That progress means more informed choices, more time, and more hope for patients.”
Survivorship is More Than Survival
Another key session focused on survivorship issues in early onset gastrointestinal cancers, led by Dr. Shruti Patel of Stanford. She outlined six areas patients consistently say are overlooked: fertility, sexual health, financial toxicity, employment, physical symptoms, and mental health.
These are not secondary concerns. They shape daily life during and after cancer.
For young onset patients, cancer does not pause life. It collides with it. Many are working, raising families, or trying to regain a sense of normalcy while managing long term effects of treatment. Care can feel fragmented and overwhelming, with appointments piling up and decisions needing to be made quickly.
Caregivers often step in to fill gaps by researching late into the night, coordinating care, and advocating during visits. Survivors, meanwhile, are left navigating long term impacts that are not always addressed in follow up care plans. Survivorship is not just about being cancer free. It is about quality of life and the ability to plan for the future.
Turning Science into More Options
For survivors attending ASCO GI, one of the most encouraging themes was how research is moving toward more personalized care. Sessions on circulating tumor DNA, or ctDNA, highlighted how this technology may help clinicians detect minimal residual disease earlier and make more informed treatment decisions.
CtDNA testing shows promise as a highly sensitive marker of tumor burden, especially when monitored over time. Earlier detection of minimal residual disease could lead to better disease control and improved outcomes. Ongoing studies like the CIRCULATE trial are exploring how ctDNA might be used to guide adjuvant chemotherapy decisions after surgery, with the goal of sparing some patients from unnecessary treatment while ensuring others receive the most effective therapy.
While ctDNA testing is not yet standard of care in all settings, the discussions at ASCO GI reflected a future where treatment decisions are increasingly tailored to the individual patient rather than a one size fits all approach.
That same shift toward personalization was reflected in data from the BREAKWATER trial, which explored first line targeted therapy options for patients with BRAF V600E mutant metastatic colorectal cancer. Results showed meaningful improvements in response rates, with responses that were both rapid and durable, and without unexpected side effects.
For patients with historically fewer effective options, this progress matters. It reinforces the importance of early and comprehensive genomic testing so patients can access the therapies most likely to benefit them as early as possible.
Community, Advocacy, and Why Voice Matters
Beyond the data, ASCO GI was also a reminder of the strength of the advocacy community. Meeting fellow advocates who have turned personal pain into action underscored why patient and caregiver voices are essential in research spaces.
Programs designed around stage of disease and caregiver needs can reduce isolation and help people feel supported. Clear communication and shared decision making help patients and caregivers feel more confident navigating complex choices.
Throughout ASCO GI, research on exercise, nutrition, the gut microbiome, and early onset colorectal cancer reflected growing momentum toward more holistic care. Fight CRC’s presence helps ensure that this progress remains grounded in lived experience.
When patient and caregiver voices are included early, research becomes more relevant and more compassionate. Most importantly, it helps ensure that no one feels invisible in their journey.
Progress is not measured only in outcomes. It is measured in time, options, and quality of life.
Community, Support, and Keeping Options Open
ASCO GI also highlighted the importance of community and specialized care for young onset colorectal cancer patients. Programs designed around stage of disease and caregiver needs can reduce isolation and help patients feel more supported throughout their journey.
These connections matter. When patients and caregivers are able to talk with others who understand their experience, it builds confidence and helps people feel less alone.
The conference also explored complex treatment decisions, including liver transplantation, and the importance of carefully weighing benefits and risks. What stood out was the emphasis on continuing to explore all options so patients do not miss opportunities while waiting on one path forward.
For patients and caregivers, having clear information and time to consider choices is critical. More options mean more agency and often more hope.
Why Patient and Caregiver Voices Matter
Throughout ASCO GI, research on exercise, nutrition, the gut microbiome, and early onset colorectal cancer reflected growing momentum toward more holistic care. Fight CRC’s presence helps ensure that this progress remains grounded in lived experience.
When patient and caregiver voices are included early, research becomes more relevant and more compassionate. It leads to care that better reflects the realities of living with cancer.
Most importantly, it helps ensure that no one feels invisible in their journey.
Progress is not measured only in outcomes. It is measured in time, options, and quality of life.