Understanding the patient experience through data
TCF is building one of the only longitudinal datasets on the testicular cancer patient journey — from first symptom to survivorship. Our research draws from AI-assisted patient interactions, web behavior, and community-sourced data to surface what clinical studies miss. Reports are currently in preparation.
TC has no borders
Conversations originated from 12 countries, with significant Portuguese-language volume from Brazil — including the dataset's single most engaged user. Approximately 103 messages were in Portuguese. The information gap is global.
Post-treatment anxiety drives the most questions
Recurrence and surveillance was the top topic category, outpacing even treatment questions. Patients finishing therapy don't stop needing support — they enter a new phase of uncertainty that few resources address.
Caregivers are a significant user segment
43 messages reflected caregiver or family perspectives — partners, parents, and neighbors seeking guidance on behalf of a loved one. This population is often invisible in TC research.
Patients use AI to process, not just look up
The average session lasted 12.9 exchanges. Eight sessions exceeded 20 messages, including a 315-message conversation with a non-seminoma patient navigating residual mass decisions. This is clinical-level engagement.
Fertility questions are underrepresented in TC content
Fertility and sexual health ranked third in query volume, yet remains among the least documented areas in public-facing TC patient resources. Testosterone, sperm banking, and post-orchiectomy quality of life are high-demand topics.
Patients are seeking second opinions through AI
22 messages involved finding specialists or seeking second opinions. In several cases, users explicitly stated the AI provided clearer guidance than the clinical team they had already consulted.
Geographic Distribution
70% of conversations originated in the United States. The remaining 30% represents an underserved international patient population navigating TC with limited native-language resources.
Methodology
Conversation logs exported from the TC Navigator chatbot hosted on testicularcancer.org
70-day window covering full calendar year-to-date activity through the export date
User messages analyzed via keyword matching across 10 topic categories; language detection via vocabulary pattern matching
All analysis is conducted on anonymized conversation data. No names, contact information, or identifiers are stored or published
Data reflects only users who engaged with the TC Navigator; does not represent all people affected by testicular cancer
TC Navigator is powered by Chatbase and trained on TCF's knowledge base, guidelines, and patient resources
Research Roadmap
Time to Diagnosis Survey
A community-sourced dataset measuring the gap between first symptom and confirmed diagnosis. This is a known blind spot in TC research — most published studies rely on clinical records that begin at diagnosis, missing the critical pre-diagnosis window.
Web Behavior & Information Gap Analysis
Analysis of anonymized search and navigation data from testicularcancer.org to map where patients seek information, where they exit without answers, and what content gaps exist in publicly available TC resources.
Survivor Quality of Life Registry
An opt-in longitudinal registry for TC survivors to report on fertility outcomes, mental health status, testosterone levels, and quality-of-life markers post-treatment — data that does not currently exist at population scale.
Caregiver Experience Study
A survey-based study targeting partners, parents, and caregivers of TC patients — a population whose experience is systematically absent from existing TC literature despite representing a significant portion of TCF's audience.