Comment by msla

Here's a big thing I learned from my cancer: Be very careful comparing the results of scans from different hospitals. I had one PET scan done at MD Anderson and one done at Providence St Patrick in Missoula and the later one seemed to show a substantial growth in my tumor, so I brought it up with my oncologist, who, to her credit, was very quick about scheduling both scans to be read by the same person... and the tumor had shrunk. I got concerned over nothing. You get all these nice reports and maybe even images on your MyChart page and you can do a lot of research yourself and you're still not an expert.

On the subject of research: The standard of care changes over time for a reason. Older studies, based on older treatment protocols, will have worse survival rates, and including them in an average will make things seem worse than they are. It's hard to do an apples-to-apples comparison with chemotherapy protocols from before current biologics like monoclonal antibodies existed.

> 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.

I wonder if this is a deliberate prompting to counteract the old WebMD flaw of "Flulike symptoms? You have a week to live" because it takes actual context to understand that a lot of things have flulike symptoms, but for most people, most of the time, in the absence of other evidence, they're caused by the flu.

> 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.

Also, genetic testing is not necessarily going to reveal anything. I had cancer, I got genetic testing, I explicitly opted for the "expanded" version which I was warned might give me results that sounded scary but were inconclusive based on current knowledge and... I got a Variant of Unknown Concern on one gene and that was it. Nobody knows what causes the kind of cancer I had (PMBCL) and the test left us none the wiser.