Don’t Google It
An instructional essay for patients and physicians alike
So, you’ve just gotten back from a physician’s office about a tummy ache that just wouldn’t go away. You’ve heard the words, “Are you comfortable?” (if you’re a practitioner, never ask that question, you aren’t soothing us, you’re warning us that something really bad is about to happen); you’ve heard the words “Stage 3,” or “Stage 4,” you’ve cried, puked, and raided the contents of your wet bar (not necessarily in that order), you’re about to start making some really hard-but-critical phone calls to your insurance company, family, and various specialists (not necessarily in that order), but there’s one critical, nay, vital step to complete first.
You Google your condition. Don’t worry, I have never met a survivor who hasn’t. If you’re ahead of the class, you might skip Google and go directly to PubMed (available at: https://pubmed.ncbi.nlm.nih.gov/), or, if you have a rarer, incurable cancer (they’re all incurable, despite what oncologists might claim), you might check in at the FDA’s testing website (available at: https://clinicaltrials.gov/). And, if you’re like most survivors, at this point, things are likely to shift from bad to worse to complete nightmare. Again, don’t sweat it; we are legion and we’ve all been there.
The purpose of this essay isn’t to dissuade you from researching your own condition (to any clinicians reading this, telling patients not to do something indicates a massive lack of how human brains work on your part), it’s to point out the all-important fine-print that defines post-diagnosis existence, namely, that the numbers aren’t really indicative of what’s happening. Right now, the statistics concerning Planet Cancer are like the DOD’s statistics surrounding Vietnam in 1966; they’re biased and don’t reflect what’s actually happening. If you have a life-limiting diagnosis (we can discuss terminology later, but usually “terminal” refers to incurable, chronic, progressive conditions wherein the patient has less than a year to go; “life-limiting” means you have an incurable, chronic condition that may or may not be progressive, depending on how you play your cards), whenever you die, for some reason, that gets factored into that primary diagnosis’s statistics (I’m lying; I know the reason; it’s because academia is incredibly ableist, and actually sifting through that data and saying, “Yeah, she had Parkinson’s, but the autopsy indicates she had a massive heart attack that probably caused it, so it should be labeled as “heart disease” would require people to actually read and sort through data, and, if there’s one thing I know from researchers, they aren’t interested in re-sorting pre-digested statistics)(but I digress). As someone who’s lived through the experience three times, I can tell everyone that the methodology behind survival statistics is deeply flawed (no one really wants my opinion, because I’m just a patient, not a researcher) — I almost walked in front of a bus in a daze of shock after my second diagnosis, which is kind of what happens if you get blindsided by the words “brain tumor.” And if that had been it, my death would’ve been sorted under astrocytoma statistics instead of traffic fatalities.
America is getting to watch the politicization and digestion/massaging of biomedical data in real-time with COVID. I don’t want to dip into tin-foil hat territory, but if you go to the CDC’s records, your state’s database, and your county public health department’s database, chances are that you might get a completely different number of COVID cases for your zip-code, because some dingbat in Atlanta has retroactively decided that “pneumonia brought on by respiratory distress caused by COVID infection” should be classified under “pneumonia deaths” rather than “COVID.” I’m not suggesting that cancer stats are receiving the same level of misdiagnosed deceit, but cancer is another heavily-stigmatized, politicized disease.
All of which plays into some advice I recently gave to a caregiver of a newly-diagnosed GBM patient; I told her to find some local, in-person support groups because they can do what I, and the epidimiology can’t; they can actually shed some light on the stories behind the stats. And, remember at all times, the statistics are badly outdated, and frequently skewed (the vast majority of studies stop tracking us at the five-year mark; imagine if your college stopped looking at students five years after they graduated, and only a few sources bothered to go back and actually make calls and see where they are now).
If you are a clinician reading this, instead of telling everyone not to use the Internet to research their conditions, just point out that all of the data available is outdated and badly out of context. It’s the patient’s job to sort through that jumble and start to make a bit of sense out of all of it, from a reporter’s context, and come back with any more-specific questions they have when you get back together to set up a treatment protocol. Like everyone else on Planet Cancer, I was initially obsessed with prognoses, and my medical team was extremely cagey about giving me any firm numbers. What I know now is, it’s nigh-impossible to make any solid predictions before the game begins. As treatment continues, your medical team can start making more-accurate predictions about your situation and outcome. Patients and physicians have a duty to continue asking questions and sharing data/concerns, and, if you’re a clinician, that’s a fast hack to jump-start the patient-physician relationship; answer any questions your patients have, and encourage them to keep asking questions (with the caveat to both sides being that, “We don’t know” is far better than lying or covering up)(and also with the caveat to survivors that you want to be very careful about which questions you ask, because the answers aren’t likely to bring you any peace of mind, and might distract you from far more important questions).
The inspiration for this essay are the horrifying statistics surrounding my own cancer, glioblastoma. What I’ve discovered, post-diagnosis, is how very, very few of us make it through chemo; I was actually messaging a woman online the other day about starting her 12th cycle of chemo. I don’t know if I spelled it out for her in these numbers, but she makes the third or fourth — possibly the fifth — GBM survivor I’ve heard of who made it through all 12 cycles (and I’m not sure about a few of those four or five)(a list that includes me, so the real numbers are probably far lower, since long-term survivors tend to be a self-selecting, somewhat secretive group). I also found out from my caregiver contact that something like eight out of nine patients in the MRZ trial she was in dropped out, which also undoubtedly skews the stats (not that I blame anyone, chemo is one of the few cancer experiences that is accurately portrayed in the after school specials in its brutality and awfulness).
All of which is a rather roundabout way of saying not that you shouldn’t run to Google before calling Mom and your nephews, but that you should be very wary of the sources of information, double-check everything with your oncologists, and constantly monitor your situation rather than rely on the stats available.