A person diagnosed with squamous cell carcinoma in May 2026 has published guidance based on their experience navigating cancer treatment, offering practical advice for newly diagnosed patients.
According to the account, persistence in scheduling is critical. The author notes that calling back a few days after receiving an appointment can reveal cancellations, allowing for earlier visits. In their case, after initially being told an ENT appointment was available only four weeks out, a follow-up call by their wife revealed an opening that week.
The author also cautions against relying solely on AI for medical assessment. “AIs may downplay the seriousness of things,” they write, noting that various AI models initially steered them toward a “you don’t have cancer” conclusion.
Genetic testing requires active advocacy, according to the account. The author reports that some doctors were reluctant to order comprehensive genetic testing promptly, even after committing to do so. One surgeon referred them to an oncologist rather than ordering the tests directly, causing a multi-month delay. “No one cares more about your case than you,” the author states, emphasizing the need for persistent follow-ups.
The author recommends patients research the “Standard of Care” flowcharts available through NCCN guidelines for their specific cancer type. These resources outline treatment options based on disease progression and are accessible to non-professionals who create an account. The author suggests using AI to help interpret these guidelines in the context of individual cases.
For surgical candidates, the author strongly recommends speaking with others who have undergone the same procedure and asking surgeons about their annual case volume and complication rates. The author did not take this step and reports regretting the decision, as the surgery proved more physically challenging than expected.
Second opinions should be obtained as soon as possible, even if the initial treatment plan seems sound, according to the account. The author recommends scheduling these at major cancer centers and requesting that the new facility independently review pathology findings.
The author also suggests creating a system to document medical appointments and discussions, using AI to summarize notes and generate follow-up questions for future visits.
The account references the Sijbrandij Foundation, founded by Sid Sijbrandij (GitLab cofounder), as a resource offering materials and guidance for patients, particularly when standard treatments have been exhausted.
Key facts
- The author was diagnosed with squamous cell carcinoma in May 2026
- Calling back for appointment cancellations can result in much earlier scheduling
- Some AI models downplayed the cancer diagnosis initially
- Genetic testing required persistent follow-up, with some doctors reluctant to order it promptly
- NCCN guidelines provide accessible Standard of Care flowcharts for different cancer types
- Speaking with others who have had the same surgery can help prepare for recovery
- Second opinions should be obtained early, ideally at top cancer centers
- The Sijbrandij Foundation offers resources and guidance for cancer patients