Things to know when you get cancer – 2026 Edition

If you or a loved one are diagnosed with cancer, you can now access and use AI to help interpret complex medical information and treatment protocols.

In May 2026, the author was diagnosed with squamous cell carcinoma in their mouth. This diagnosis led to a series of lessons learned regarding cancer treatment, emphasizing the need for aggressive self-advocacy. The author stresses the importance of persistent follow-ups for scheduling appointments, as readily available cancellations can shorten wait times. They also note that AI models, when consulted, may downplay the seriousness of potential diagnoses. A key takeaway is the necessity of pushing for comprehensive genetic testing, as some medical professionals may delay or overlook this crucial step. The author advocates for patients to take control of their care, consult "Standard of Care" guidelines (like NCCN), and use AI to understand treatment options. Seeking out individuals who have undergone similar surgeries and obtaining second opinions from top cancer centers are also highlighted as critical actions. The author utilized AI to summarize medical appointments and found resources from the Sijbrandij Foundation to be invaluable, particularly when standard care fell short.

The narrative highlights a critical gap in current AI capabilities: the tendency for models to understate potential medical severity, underscoring the need for cautious, human-verified interpretation of AI health advice. This experience suggests that while AI can process information, it lacks the nuanced judgment required for critical medical scenarios, necessitating a patient's active role in overriding or validating AI suggestions.

Furthermore, the author's journey emphasizes the burgeoning importance of patient-driven research and the strategic use of AI as a personalized medical navigator, especially when standard care pathways prove insufficient. The recommendation to leverage AI for synthesizing complex medical data and generating targeted questions for clinicians points to a future where AI acts as an empowering tool for patients, enabling them to engage more effectively with healthcare providers and specialized cancer centers.