JJ Maxwell was diagnosed with squamous cell carcinoma in his mouth in May 2026 and shares what he learned. His first lesson is to be persistent about scheduling. Calling back to ask for earlier openings and checking for cancellations can shorten long waits. He got into an ENT appointment that week only after his wife pushed him to call again.
He also warns that AI chatbots may downplay serious symptoms, and that patients may need to push for comprehensive genetic testing. His surgeon promised to order it but later referred him to an oncologist, which delayed results for months. Patients should take control, send follow-up messages, and use NCCN Standard of Care flowcharts to understand their options.
Before surgery, he recommends speaking with someone who has had the same operation, since his own recovery was far rougher than he expected. Patients should also ask surgeons how many procedures they perform yearly and what their complication rate is. A second opinion at a top cancer center is strongly advised, with a request for a second pathology read there.
Maxwell kept a folder of dictated appointment notes that AI turned into summaries with follow-up questions. He points to the Sijbrandij Foundation for resources. He also found that major cancer centers, like MD Anderson, can answer questions in minutes through direct contact between doctors, when local hospitals might take days or never respond.
Source: Hacker News · Summarized by HeadlinesBriefing