Ask a Survivor: Cancer 101

Because cancer is still a heavily-stigmatized disease and I’m one of the few people who’s just said, “Hell with it; I have terminal brain cancer, AMA;” I make most of my contacts with other survivors through referrals by mutual friends and/or contacts on social media. In that spirit, in case you have a friend with cancer and you don’t feel comfortable reaching out to me or just driving them to their next oncology consultation and taking notes; I thought I’d just paint some broad, general pointers for all the newly-diagnosed (or friends of those people). I’m recycling a few points I may have touched upon before in the interest of making a general, “Welcome to Planet Cancer” document for the 30–40% of you who will eventually be diagnosed with cancer. Even though I stand by this advice for most cancers, as always; I can really only speak with direct, first-hand expertise and authority on secondary glioblastomas (and benign tumors) in young adults, so if you’re worried about ALL or colorectal cancer, you might want to get advice from someone else; I also slap on the warning that, even though I do have a graduate degree, most of my experience is self-taught and hands-on, and is no substitute for a qualified medical opinion. With those usual warnings out of the way, let me rehash and detail some advice I recently gave to someone whose brother has cancer (I’m starting to get suspicious about how few people who have cancer themselves contact me, but that’s another topic for another time).

Treat the process like a trip to the casino. By which I mean, get the pathology report tattooed on your forehead, and do some proper research (NCBI, specialist consultations, etc. NOT Youtube) on your diagnosis to figure out which game you’re playing, which strategies work best, and what the odds are (oncologists are usually cagey about giving firm numbers, so you might have to press them and do additional homework — your goal is to get some sort of baseline success rate, and then figure out how to improve your odds). Not all cancers are created equal, nor are all oncologists and treatments. And always remember that there is no substitute for luck. Your ultimate strategy shouldn’t be to get into a Casino Royale-type of high-stakes poker game (or permanent cure), but a card-counting strategy where you slowly chisel away at the disease. A lot of survivors I’ve met have a bizarre delusion that science will ride in at the last moment with some magic cure. The most successful survivors I know have found a treatment program that works, and they’re just keeping at it. Even though No Evidence of Disease is a real, attainable goal (I’ve been NED since 2018), once you get there, you shouldn’t think of it as a permanent state of grace, but as a temporary reprieve from the disease. I realize that’s a grim, somewhat nihilistic view of things, but I’ve been told I was NED on three separate occasions. At this point, no one’s dumb enough to imply that it’ll be a permanent thing. Unlike a trip to the casino, you can’t call it a night after you win a jackpot and go home while you’re ahead, you’re here permanently, so once you’re ahead, you should try to refine your coping mechanisms and treatment processes.

Keep your options open. Cultivate second and third opinions, expect things to go disastrously wrong at some point; when that happens, you want to have a few back-up treatment options available so that it’s just a matter of sighing and going through your contacts list if you get bad news. For my own particular cancer (Glioblastoma), everyone hears all sorts of stories like John McCain’s where the disease was resistant to treatment, an unstoppable force, etc. And, yeah, those situations exist, but they are positively dwarfed by the number of people who discontinue treatment, have a dangerous reaction to treatment, or whose physicians discontinue treatment because they’re worried about their patients’ well-being. I’m not going to advocate that things like exercise, nutrition, a sense of community, or medical marijuana are curative by themselves, but they alleviate other enormously dangerous aspects of cancer and cancer treatment that are rarely openly discussed outside of the cancer community, such as isolation, constipation, fatigue, insomnia, depression, pain, etc. And these need to be considered as dangerous to patient health as COVID.

Scientific studies and statistics aren’t as valuable as you might think. Don’t get me wrong, I’m a big fan of the peer-review process, data-gathering, and safety/efficacy testing, but all of these things do take time; which is the first thing that‘s in scarce supply when you hear the words “Stage 4.” An unfortunate-but-necessary part of the process for my survival was reframing my mind-set from “scientist” to “investigative journalist” (again, when I started figuring out how few GBM patients made it through chemo, the grim statistics started making sense). Even though peer-reviewed studies are a superior, more-reliable form of evidence than anecdotes gleaned from support groups and nurses; if the option is “no information” or “unreliable information,” that latter group is the better choice. When it comes to cancer statistics, even though they’re better than nothing, almost all reputable stats are badly out of date, so treat them with the same skepticism you would a nurse’s stories at the infusion center. I’ll admit that living this area of scientific uncertainty can make you a potential victim to all sorts of quackery (if I had a dollar for every “miracle cure” that’s been mentioned on my IG account, I’d be in a beach house in Maui), but, at the same time, for far too many types of cancer, authoritative sources aren’t much more reliable. Obviously, you want to go with confirmed, reliable evidence-based medicine when it’s there, but it may not be there when you’re diagnosed.

Don’t give up. I’m not going to suggest that tenacity — or lack thereof — is the sole difference between those of us who “make” it and those who die (“lucky cancer” is a thing, hard as it may to believe); but it seems to be the unquantifiable X factor that differentiates the long-term survivors from the rest of the crowd. I know lot of brain cancer survivors who crumble at the words “inoperable” instead of hearing, “I can’t/won’t operate on it; get a second opinion.” This goes hand-in-hand with my advice about cultivating multiple opinions and treatment options. Very few survivors are willing to undergo dozens (in some cases, hundreds) of infusions until they get the “right” combination of chemo agents, but that might be what’s needed. And, if effective treatment requires 100 infusions, you definitely don’t want to call it quits on the 99th. My golden rule on this one throughout treatment was, “I can always stop or discontinue treatment if it gets too harsh, (and Marizomib is a nasty drug), but getting more treatment isn’t always an option.” Just try one more infusion. Get one more consultation. Just do one more of everything.

Don’t arbitrarily dismiss or refuse a course of treatment, or get your heart set on a specific course of treatment. I definitely fell victim to this thinking in 2017, when my latest tumor was detected. Like every other American, I was terrified at the thought of radiotherapy and chemotherapy, so I opted for a slot in a vaccine trial. I waited seven months for a slot to open up, but in that time, my low-grade glioma recurrence became a full-blown glioblastoma, disqualifying me for the trial, and, ironically, requiring conventional treatment. Planet Cancer is full of stories like that — people who absolutely will or will not do something, only to find out too late that choice with a chronic, dangerous disease is largely a comforting illusion.

Treatment will probably be as bad as you expect before the end. I’ve mentioned it before, but the most-frequently-asked question from the newly-diagnosed is, “Will I lose my hair?” And the inevitable response is, “Yes, absolutely.” The unspoken, horrific further truth would be, “By the time that happens, the fatigue, pain, and other problems will be so severe that hair loss won’t even make a ‘Top Five’ list of complaints.” With my own tribe; I know a lot of brain cancer patients go into chemoradiation, and it’s bad, but that initial six weeks of treatment doesn’t prepare you for Cycle 7, when things somehow get even worse. The trick with this piece of advice is; treatment will be as bad as you expect, but it likely won’t be bad in the ways you expect. Most of us are prepared for hair-loss, pain, possibly even constipation, because every after school special about cancer highlights these issues; very few mention issues like food tasting horrible (or being too tired to eat), medical trauma, or any number of problems that will blind-side you.

Advocate for yourself. The most amazing thing every newly-diagnosed survivor has to learn, very quickly, is how poorly the medical system is designed for sick peoples’ benefit. You’re going to have to speak up more frequently and loudly than you ever have, before, or get steam-rolled by the disease.

Stay on top of your appointments, prescriptions, and overall health. I think I mentioned once that, at the height of treatment, eating properly (lots of fiber and protein), getting prescriptions filled, going to the gym, and going to appointments took up at least 15 hours a week. Just as we’re starting to understand some incredibly ugly truths about systemic racism and our system of law enforcement; the unspoken horrible truth about chronic disease is that it’s also a full-time occupation. And that definitely sucks, but it beats the alternatives.

If you have a friend or relative with cancer, instead of asking people what they need, just show up with a pizza, and listen carefully to ascertain their specific needs. For some reason, every person thinks it’s a great idea to show up and clean someone’s house (which is an especially cruel thing to do for those of us who have an organic brain disease), or avoid us. There is a middle ground. We’re going to need someone to take us to infusions, help us make copays, babysit (possibly), get meals, go to oncology appointments (and act as an advocate), and offer general emotional support.