Diagnosed with oral squamous cell carcinoma in May 2026, JJ Maxwell says that diagnosis, surgery, genetic testing, and second opinions taught him how actively patients must participate in treatment. His central advice is to persistently follow up on appointments and test results, read standard treatment guidelines, and get a second opinion at a major cancer center as soon as possible. He particularly emphasizes how much faster communication among doctors, pathologists, and testing teams can be at a specialist cancer center than at a local hospital.

1. After a Cancer Diagnosis, Pursue Appointments Persistently

The author stresses that people with suspected or diagnosed cancer should not passively wait for tests and appointments. If an appointment is weeks away, call again a few days later to ask about cancellations and earlier openings.

Initially, before he even knew what was wrong, the earliest ear, nose, and throat appointment he could get was four weeks away. His wife encouraged him to call again. A cancellation let him see a doctor that same week. With a time-sensitive disease such as cancer, a difference of days or weeks can feel enormous.

"If your appointment is weeks away, call again a few days later and ask whether there is an earlier date or a cancellation."

The point is not to expect the healthcare system to automatically move every patient's case forward as quickly as possible. Calling, asking again, and requesting schedule changes takes effort, but can be a practical way to speed up treatment.

2. Do Not Simply Trust Reassuring AI Assessments

The author says that several AI models steered him for some time toward the possibility that his condition was not cancer. AI can help interpret symptoms and organize information, but may underestimate serious possibilities.

"I talked to several models, and most led me for a while in the direction of 'you do not have cancer.'"

AI answers should therefore serve only as supporting information. If symptoms persist or worsen, or something feels wrong, examinations and tests by medical professionals, including additional tests when necessary, should take priority over reassuring AI answers.

3. Follow Up on Genetic Testing and Results Yourself

Comprehensive genetic testing can be important for understanding a cancer's characteristics and possible treatment options. However, the author reports that some doctors did not order tests promptly, and that even promises to arrange them did not lead to a smooth process.

His surgeon said he would arrange genetic testing but ultimately referred him to medical oncology. This delayed the results by months. The first test also used tissue from the surgically removed tumor rather than the initial biopsy. Patients need to check carefully when testing will happen, which sample will be used, and when results will actually arrive.

"Nobody will care more about your case than you. Take charge, and follow up a lot."

This is less a call to distrust doctors than a reminder that patients or caregivers must keep checking whether tests were requested, how referrals are progressing, and when results are expected within a complex care system. Preparing questions before the next visit and keeping a record of communications may help.

4. Read Standard Treatment Guidelines Yourself

The author notes that Standard of Care flowcharts are available for different cancers. He recommends understanding which tests, surgery, radiation, and drug treatments are generally considered at each stage of a cancer's progression.

He recommends the NCCN guidelines. Non-specialists can create an account to access them, and he particularly prefers the PDFs. An interactive navigator can also help people find the parts relevant to their situation.

Here, AI can help explain difficult medical language and guidelines rather than replace diagnosis. For example, it can help organize questions such as:

• What treatment sequence is generally recommended for my cancer type and stage?
• Where does the proposed treatment fit within standard guidelines?
• Under what conditions are other treatment options considered?
• What should I ask my doctor at the next visit?

Guidelines may need to be applied differently depending on a person's health, tumor location, pathology findings, and available treatment facilities. They are best treated as preparation for a discussion with medical professionals.

5. Before Surgery, Talk to Someone Who Has Had It and Ask Specific Questions

If surgery is recommended, the author suggests talking, if possible, to a patient who has undergone the same operation. He regrets not doing so.

A doctor can explain the procedure and its risks, but explanations alone may not convey the pain, fatigue, difficulties with eating and speaking, recovery, and return to daily life that patients experience. Although his surgeon explained the operation, the author found the physical burden far greater than expected.

"My surgeon explained the operation, but it was physically much harder than I expected."

He also recommends asking more specific questions than "Will it go well?" Ask how many times the surgeon performs the procedure each year and about major complication rates. These are basic questions for understanding and preparing for treatment, rather than aggressive challenges to the clinician.

6. Get a Second Opinion Immediately, Even if You Like the Plan

One of his strongest recommendations is to seek a second opinion. Even if you trust your doctor and like the current treatment plan, obtain another opinion from a specialist cancer center as soon as possible.

This may require many phone calls and possibly a flight. Once the diagnosis is reasonably certain, he advises immediately trying to arrange an appointment at a leading cancer center.

He also recommends asking the second-opinion center to review the pathology slides, rather than merely forwarding the existing pathology report. Because pathology interpretation can determine the direction of treatment, an independent specialist review can matter.

"However much you like your treatment plan, get a second opinion as soon as possible."

7. Keep Visit Records and Organize Them With AI

The author created a new folder on his Mac. After appointments, he dictated what had been discussed and what the doctor had said. He then used AI to turn this into a written summary and generate follow-up questions for the next visit.

This is particularly useful when cancer care spans multiple specialties and tests. Patients may be anxious or overwhelmed during appointments and miss important explanations. Recording details immediately afterward, while memory is fresh, makes it easier to review the course of treatment later.

Useful details to record include:

• The appointment date and clinicians involved
• New test results and their interpretation
• Changes to the treatment plan
• Scheduled tests, surgery, and treatment
• Precautions emphasized by the doctor
• Anything unclear and questions for the next visit

Such records help patients themselves and make it easier to explain their situation to family members or clinicians at another hospital. 📝

8. Use Foundation Resources and Patient Support Networks

The author recommends exploring the Sijbrandij Foundation's resources and support services. He introduces them as resources created by GitLab cofounder Sid Sijbrandij in response to situations where standard care was insufficient.

According to the author, the foundation offers questions to ask doctors, materials for evaluating treatment options, and scheduled consultation calls. For patients facing complex treatment or considering options beyond standard care, these outside resources can broaden their information and improve the questions they ask.

9. Why a Major Cancer Center Can Make a Difference

After the article reached the Hacker News front page, one reader suggested that people living within a two- or three-hour drive of a major cancer center might be better off going there than to a local general hospital. The author agreed and suggested using the US News cancer hospital rankings to explore options.

The discussion also offers practical advice: leading cancer centers can generally accept insurance, so consider taking time off and booking a hotel if necessary. Not everyone can travel this way, of course. The point is to make the most of access to specialist centers within one's circumstances.

The biggest advantage the author experienced at MD Anderson Cancer Center was speed. When a question arose during a visit, his doctor called a pathologist he knew personally and got an answer in just 20 minutes.

"At MD Anderson, I had an answer to a question within 20 minutes of the visit because my doctor called a pathologist he knew by name."

Outside a specialist cancer center, he thinks this might have taken days or produced no answer at all. He had previously asked his medical oncologist the same question without getting a clear answer. The advantage is not just one famous physician: it is a team-based care system connecting surgery, medical oncology, radiation oncology, and pathology quickly.

He also recommends the related Hacker News comments.

10. Closing Thoughts

The main message is that, after a cancer diagnosis, patients should become active coordinators as far as they can. Bringing appointments forward, tracking tests and genetic analysis, understanding guidelines, hearing from people who have had surgery, and seeking slide reviews and second opinions at specialist centers can all be part of treatment.

Information and schedules may not connect smoothly on their own within the healthcare system. This account suggests that, despite the difficulty of the situation, keeping records, preparing questions, and asking for help can lead to faster and better treatment decisions.