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I was diagnosed with squamous cell carcinoma in my mouth in May 2026. Here are some things I learned based on that experience so far.
- You need to be doggedly persistent on scheduling things. Yes this means lots of phone calls. If you get an appointment a few weeks out, call back a few days later and ask for something sooner and see if they have any cancellations. I could only get an appointment 4 weeks out with an ENT (this was before I knew anything was wrong). My wife made me call back and I was able to get in that week due to a cancellation.
- AIs may downplay the seriousness of things. I was chatting with various models and most pushed me in the direction of “you don’t have cancer” for a while. Just something to note.
- You may need to push for comprehensive genetic testing. Some doctors were weird about this and didn’t order it promptly, even after telling me they would. My surgeon, who told me he’d get it done, eventually referred me out to an oncologist. This caused a multi-month delay to getting genetic results, since the first results were done on the surgery tumor, not the biopsy tumor. No one cares more about your case than you, so take control and send lots of follow-ups.
- You can find the “Standard of Care” flow charts for every cancer type. Look and get through this yourself to see what the options are based on how things have progressed. NCCN guidelines. You may need to make an account, which you can do as a non-professional. I like the PDF files. They also have an interactive navigator. Use AI to help you figure out what to pick based on your case.
- If surgery is recommended, I would try and talk to someone who has undergone the surgery. I did not do this and regret it. Ask them how intense things were, what it felt like, etc. My surgeon talked me through my surgery, but it was a lot rougher on me physically than I expected. Ask the surgeon how many of these surgeries they do a year and what the complication rate is.
- Get a second opinion as soon as possible, no matter how much you like your plan. This may require a lot of calling and getting on an airplane, but I’d move to schedule it at a top cancer center as soon as you are relatively sure of your diagnosis. Ask for a second read of the pathology at the center where you get the second opinion.
- I started a new folder on my Mac, and after appointments I’d dictate what happened and what the doctor said and have the AI make a new document summarizing things and asking its own follow-up questions for next time. Nice to be able to refer to this over time.
- Check out all the resources and materials at the Sijbrandij Foundation. Sid (GitLab cofounder) took matters into his own hands when standard of care ran out. Schedule a call with these guys. They are great and have good materials and questions to ask your doctors.
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