Yes, I Am a Cancer Survivor, Please Stop Sending Me Articles About a Cure
I got my first brain tumor 17 years ago. It sucks, and it’s overshadowed my life, including multiple other brain tumors, but that is nothing compared to how many fake news items I get sent every year about how close “they” are to finding a cure.
I don’t know who “they” are, having spent a fair chunk of my life in grad school and in labs, but it’s usually some vague aspect of the medical-industrial complex. And if “they” don’t find the cure (statistically, they won’t), you get another article on some new discovery or development to cure cancer “they” don’t want you to know about. These articles are always by scientists in full-safety gear using micropipettes (these are always stock photos, which is why this article doesn’t have any photos). I don’t know why the micropipette replaced the microscope for being the symbol of a qualified lab scientist; it’s a glorified eye-dropper that allows one to measure and dispense teeny-tiny sub-teardrop amounts of liquid. It’s an important tool, but you rarely see the equally-important agars, incubators, centrifuges, and electrophoresis plates that go into a genetics lab.
I wish “they” would make up their minds about whether they want to be secretive and toast their Illuminati-like cancer conspiracy, or whether “they” want to publish their findings and apply for FDA tests on the public record; but right now “they” are behaving like a publicly-listed company that benefits from PR, and lazy journalists and a complacent, “Like”-button-oriented public are enabling them. This week, it’s a group called “Accelerated Evolution Biotechnologies, Ltd,” which left me breathless at the readily-digested buzzword-bingo. So, should you “Share” that article with your friend who has cancer (we also don’t like to be thought of as “your friend with cancer,” but that’s a different topic for a different day). Probably not. But at least take a few basic-research steps.
- Check the source. I rarely get articles sent to me from NCBI or Science Daily — One of them publishes peer-reviewed articles, one of them reports on the latest; your local NBC or Fox News-affiliate is not a credible source for scientific developments, believe it or not.
- Check the company. In this case, the company actually has a website, and they claim to have a “platform” (a patented way of delivering drugs or curing a disease), they don’t mention anything about MuTaTo, the drug or immunotherapy in question. If I were a big company (and they need to be big — a friend who works as a biotech investment consultant once pointed out that no company valued at less than $250 million has ever brought a product to market). You can usually find these under the “pipeline” tab.
- Check the FDA. Clinicaltrials.gov is the FDA website for all human tests, if anyone wants to check the status of that new miracle cure. If it’s not there, either the paperwork is still being filled out, or it’s not anywhere near to ready for human use. There are always promising developments when it comes to curing cancer in mice, somehow that rarely translates into a useful therapy for cancer survivors; largely because mice and humans — forgive me if you’ve noticed — are not the same. Mice not only don’t live as long as humans (many times, it takes years for some of the worse side-effects of treatment to show up; mice won’t live long enough for these to be detected like they would in a human trial); they don’t have the same legal protections, which means you can do all sorts of potentially-dangerous things to them that you can’t for humans (scientists have been able to extend the lifespans of mice by severely limiting their caloric intake to near-starvation levels; obviously, no one can test that on humans, because it would be monstrously unethical to nearly-starve people for decades).
- Is there a scan of a brain?
I don’t know when we, as a society, determined that brain cancer is the very worst, most-horrifying disease imaginable, but, as a brain cancer survivor; I do enjoy the constant, gimmick-y reminder that I have The World’s Worst Disease. If you wouldn’t send an article about new hip-replacement joints to your friend who needs orthopedic surgery with a picture of a trauma victim with their legs removed, you probably don’t need to send me a cancer news item with an MRI.
5. Are they in stage II testing? Again, you can look this up on the FDA website, but a tiny fraction of drugs and medical devices make it to market (something like half a percent), not because “they” suddenly don’t want you to know about it, but because the drug isn’t safe or effective or cost-effective enough to continue testing. If it hasn’t even reached this stage, it’s not likely to be available soon enough to make a difference to that patient.
6. Is the article specific? All the “cancer treatment development” stories I see are usually for “cancer,” when that term refers to a broad class of diseases. All cancer is, is a few cells decide to go rogue and multiply and grow without the usual cellular rules. Which means there are as many different types of cancer as there are cells in your body. AEB’s patented “platform” targets a specific gene mutation — the EGFR gene — which is found in many, but not all, cancers. I once asked a researcher who was working on a new prostate cancer treatment if there was likely to be some sort of magic silver-bullet cure, or if science would have to grind through them individually, like infectious diseases. She said it was likely the latter. If the research doesn’t claim to target Stage III leiomyosarcomas, it’s probably not a credible discovery.
7. Just… stop sharing them. The rather horrifying truth is that cancer is inevitable (I had an immunology professor who once calculated that even if we lived in sealed bubbles and never encountered any known carcinogens, we’d only cut cancer rates by a third). If you live long enough, you’ll accumulate enough DNA damage (to give you an idea of how readily-available that is, both sunlight and oxygen can be carcinogenic; try and live without those, though). But that’s not the narrative our society wants to push; that illness is optional, and only losers die. That’s harmful not only for cancer survivors, it will be harmful to you when you first get diagnosed and spend a week mentally playing, “Where did I go wrong” instead of calling your oncologist and demanding the most aggressive course of treatment you can. Speaking of which, if you go to a good cancer center, your physician should be able to determine if you qualify for a clinical trial, which is where you get the not-available-to-the general public stuff. Be forewarned, cancer trials — like cancer treatments — are highly specific; sometimes just having the wrong grade of tumor will disqualify you. And surviving cancer is far more due to random chance than we’d care to admit, it’s not helpful for the families of those of us who don’t make it to nudge them with the suggestion that they could’ve done it differently and had a different outcome.