AYA Cancer Awareness Week
Monday marked the start of Adolescent/Young Adult Cancer Awareness Week. For me, it was just another Monday
However, social media will, in accord with the protocols laid down by the Facebook Ruling Council, come alive with photos of people ringing the bell at the infusion center, sobbing at their diagnosis — all those big moments that celebrate the sort of linear narrative that ableds like to build around complex, multifactorial diseases. If you are a new member of that community, you might see these photos and feel a pang of envy or jealousy at the life you’ve just lost, but if you’re a member of the community, you’ll recognize these photos for what they are: simple markings of time on a much, much longer, more hazardous, and more dangerous path than most of us can fit in 280 characters.
One of the problems with a shrinking national attention span — aside from a reduced market for Russian novelists — is that it reduces large, systemic problems into soundbites that get absorbed and disseminated until the problem and those impacted get buried in white noise. We see this all the time in America, and the volume gets ratcheted up whenever discussing disease. I’ve learned, nothing scares able-bodied people like sick people, because we embody the threat that they could very well become us. White folks can’t threaten to make each other black, but they love threatening people with a crippling beating. We are the group that everyone loves to point to and say, “See what happens if you steal your sister’s dolls, Jimmy?” We see this in the rhetoric surrounding substance abuse, most notably in Nancy Reagan’s infamous, “Just say ‘No,” slogan. Realistically, by the time you’re in a room where a joint is being passed around, all of the major decisions have been made, and taking a drag or not is largely performative. But it’s a much longer, harder-to-understand story if it starts with, “The rapid deindustrialization of the Midwest put economic pressure on little Johnny’s parents, leading to their divorce, the defunding of after-school programs, and Johnny’s mother taking a third shift at the factory.” Right away, the average American voter is disinterested, because, to fix Johnny’s latent heroin problem, we have to discuss automobile tariffs, the price of steel, profit margins, and the role of education in crime prevention. No one wants to hear that when we could watch Miami Vice. I get it; I’d much rather read a brainless thriller than a study on common mutations in solid tumors. But “Essential oils and yoga” is a much better tagline than, “This is going to hurt like hell and cause sterility, but it beats the alternatives.”
My point is, as people see this influx of inspiration porn or tales of woe this week, keep in mind that you’re just getting that “Just Say No” moment. None of the critical decisions are worthy of a hashtag, none of it’s as glamorous as we’d like to believe, and, by the time a photo is Instagram-worthy, all the critical decisions have been made. All of which should be kept in mind if you’re getting a portacath installed and your idiot friends are sending you treatment success stories (we’ve all been there, don’t worry).
On this second day of the week of AYA Cancer Awareness, I’d like to share some further revelations I’ve had on my time on Planet Cancer (which, come to it, pretty much overlaps with my time on this planet, but I’d digress), especially the differences between Adolescent and Young Adult Cancer (at my current life expectancy, planning on making it to Regular Adult Cancer is like basing drug policy on Miami Vice). And, because this is a weirdly sensitive subject in my family, my reflecting on my own experiences and saying, “I did the best I could in the circumstances, but, in retrospect, it was a mistake” isn’t a condemnation or admission of guilt; it’s a reflection that I’ve sussed out some places where I made a mistake, and I’d rather no one else made the same one. And, it’s worth noting that I think I have superb physicians at every level, all across the decades, but it’s worth noting that they are all very much products and representatives of a system that is completely married to the status quo, and, as such, even though I think of them as highly skilled, competent, intelligent individuals, they are also, at the same time, cogs in a much larger, potentially more-dangerous machine.
Among other items that every newly-diagnosed person needs to know; we overtreat youth cancer. Yes, I said it. I’ll say it again. Modern medicine recklessly destroys lives in the name of keeping a heart beating. When I was diagnosed at 17 with a brain tumor, my then-medical team was eager to hack away at it with an ice pick. No one ever discussed, before surgery, the very real likelihood of reduced mental abilities. I throw that one around a lot, and, despite my vocabulary, I am now miserable at standardized tests, which may not seem like much, but virtually every graduate school, university, or post-graduate education is largely dependent upon your ability to fill out a multiple choice test with a Number 2 Pencil. Not discussing that with me, in retrospect, would be like telling potential patients, “Hey, you’ll be able to run after this surgery” without adding that critical warning, “But you won’t be able to drive, sorry.” Those are the critical little addendums. Similarly, with that first medical team, my treatment was always going to be surgery, radiation, and standardized chemo — in that order. It was only after I got the biopsy results indicating that the tumor was benign (another pro-tip; the only benign tumors out there are ones other people get) that post-surgical care was canceled. What I now know is, if your team is making medical decisions before the pathology report comes in, it’s akin to your hunting friends calling at 10 pm on a Sunday night and saying, “Hey, can you come hunting with us right now? Just bring the shotguns, don’t worry about the deer rifle, and bring a balaclava.” The next ten minutes of that conversation hardly matter, you aren’t going hunting with them, again. And a lot of survivor mistakes hinge upon that, “Well, this physician was great with my roseacea, so they’ll get me through this” (which might seem utterly moronic, but cancer is, like any chronic disease, hyper-specialized, so change oncologists to match your current condition), and we tend to ignore other red flags. My original medical team didn’t discuss anything other than standard surgery, standard radiation, and standard chemo. They were practicing assembly-line medicine rather than taking the customized approach I later discovered worked better. And, if they had discussed the full range of potential treatments and given me a run-down of all the options available (I later learned that I would have been a candidate for the far less invasive Leksell Gamma Knife surgery/treatment), I probably would have gone with the one that allowed me to keep my SAT scores consistent. Cancer treatments will absolutely impact your future, and you have to discuss every potential side effect with your oncologists before you’re in the infusion center. If you’re worried that a treatment will impact your future prospects, just tell your medical team that your uncle’s a neurologist and your father’s a Stanford alum. Not that I’d recommend an adversarial approach to physician-patient relationships, but medicine is a highly prejudiced field, and nothing levels classist beliefs like the threat of an expert witness and a lawsuit (if you feel like you’re getting a raw deal, anyway). If you’re a physician who feels threatened by that sort of tactic, maybe don’t be a physician who treats people differently when confronted with the possibility of consequences for screwing up someone’s entire life. Speaking of how adolescent/young adult cancer and doctor-patient relationships change…
Physicians talk to teenage patients differently than they do to adults. A black commentator pointed out that the lasting, most-horrible legacy of slavery, indigenous genocide, and other forms of systemic oppression is that it encourages white supremacy and the “othering” of minorities. A lasting aspect of ableism is that it allows physicians to treat their patients in an “othering” fashion. I was struck at how the paternalism, while still embedded deeply in the system, diminished when I could vote. At age 28, I got my second tumor, and, despite still being in the same body, that’s when concerns about quality of life were seriously discussed and taken into account. Admittedly, I’d learned a lot in the 11 years between tumors, and that accounts for a significant difference in attitude, but I have very little doubt that the sudden change in tone had more to do with my ability to seek legal recourse and requirements on consent (your oncologists will pitch a very different proposal to you, directly, if they don’t have to go through family intermediaries to get consent).
We undertreat Young Adult cancers. I said that, too. It might seem like an odd contention, given what I wrote just a few paragraphs ago, but it’s true. Admittedly, I was wary of extensive treatment after the first surgery severely screwed up my life plans, but Tumor #2 was the definite precursor to cancer. My breast cancer friends didn’t have to put up with this when they got their first tumors — physicians pretty much demanded they go in for chemo and a full course of treatment right away. I don’t know what my life would look like if everyone had been as aggressive about treating that second one as we were with treating my third (extremely malignant tumor). Speaking of which, the mere fact that I have to number my tumors brings me right up to a truly awful thing I’ve learned in the graduation from “Adolescent” to “Young Adult” cancer…
All cancers are chronic. The medical terms “acute” and “chronic” are important to clinicians because they have different implications for treatment and prognosis, but, from a survivor’s perspective, the difference between getting a (benign) brain tumor at 17, another at 28, and another at 32, and simply having chronic leukemia is largely a semantics issue. I know I’m going to hear back from my leukemia friends about how wrong I am, but I really might have preferred ten years of chemotherapy to multiple dangerous, debilitating surgeries followed by a year of chemoradiation. If you’re wondering why I submitted to multiple neurosurgeries in 12 years when most people can go their whole lives without the first one, it’s because, frankly, I was sold a bad bill of goods.
It took me over a decade to figure this out, so I will save everyone some heartache right now; all treatments are definitive. In medicine, this is simply the best treatment for the patient at that time, and, yeah, in all of my tumors, I did get that rather broadly-defined treatment. I was also assured, after my first and second treatment, that nothing more than monitoring my health was required. Which was kind of a surprise when I got the third tumor. I don’t think this is the result of any genuine malevolence or incompetence on the part of my medical team, just the inevitable end-result of decades of internal pressure on clinicians to appear more-professional, more-competent, and more-empathetic than they actually are. And it is a very hard sell to sit down with a distraught teen and their family and say, “Look, we can zap this tumor this time around, no problem. but you have to plan on this thing coming back, worse, at some point. We’ll happily zap it, then, but that’s in the pipeline.” I hate the quackery and lies in the whole, “Have you considered essential oils and yoga” sentiment, but my physician friends need to pay attention to it, because when you sell patients on the same rhetoric surrounding treatment time and time again, someone will take note, and figure out how to muscle in on your market (in this case, everyone out there still believing that they’ll only need the first treatment). If you don’t want that to happen, then you need to start having those tough talks about incurable disease and the constraints they put on a human life right after diagnosis. Whenever discussing or planning treatment, it is unforgivable to just cut us loose with that faint hope that we won’t be back in the infusion center at some point.
I have never, ever met a survivor who only had the single cancer. I know this because I’m an active member of several cancer support groups, and I keep going back to these groups because the best resource for new survivors is old survivors. I don’t mean “over 60” old, I mean, “several years post-diagnosis” old (in cancer years, anyone who’s more than five years out from their diagnosis is Methuselah ). And it wasn’t until I got out and started shaking hands and making friends on Planet Cancer that I started getting the sort of information and stories that put the overflow of useless, outdated statistics into context.
Far and away, the biggest-difference as a young adult survivor vs adolescent survivor is that access to things like anecdotal evidence and context. Which might seem like an obvious, glaring gap in the medical system, but I know; Physician-patient miscommunication is a feature, not a glitch. A not-insignificant portion of my interactions with new folks on my medical team are dispelling prejudices or preconceptions about what I would “be like” (far and away the comment I hear the most is, “I didn’t expect you to be so funny,” which is an odd remark from an oncology fellow, because a third of my survivor friends are hilarious). I know from personal experience that a not-insignificant portion of medical school involves casually minimizing patient experiences, but the inevitable end result of asking if a symptom is psychosomatic is an inability to trust and communicate with patients. This sort of miscommunication gets started at the time of diagnosis with that singularly odious line, “Are you comfortable?” That is the medical equivalent of saying, “Hey, we need to talk.” Nothing good ever follows that question, and everyone in the English-speaking world knows it. For all of my physician friends, let me ask, “Are you the type of person who greets a Tinder match with, ‘Hey?’ Would you respond to someone who used that opener?” If not, then why would you use the most-cliched line in modern medicine? There’s a teachable moment here for all physicians, you need to treat delivering bad news like a pick-up line. I don’t mean that your goal is to sleep with a patient, but the goal must not be to deliver bad news and a referral, it’s to start a conversation — or series of conversations — centered around the theme, “So, there’s a new, terrible development in your life, we need to make some hard, informed decisions together.” Modern medicine is all about informed consent, but that’s not really a possibility if treatments are presented in a, “Do X, or you die” fashion. And, even though no one has ever said that to me, that is absolutely the unsaid threat behind every single medical discussion concerning life-limiting disease. Survivors need to know that there’s going to be a lot of potential for communication errors, so keep in touch with your medical team for even the smallest issues. Medical personnel need to know that informed consent is never a “one and done” deal — you need to get consent again, and again, and again. Patient engagement is one of the unquantifiable X-factors in cancer survival, and the medical folks can jumpstart that in the first twenty minutes of cancer by caring enough to communicate honestly, even if that occasionally means being blunt or less-than-professional. The medical team I had for cancer were all top-notch for answering any weird question I had during business hours, and that sense of investment via simply giving complete and honest answers really did carry me at times.
Honesty and communication are especially critical with AYA cancer because perceptions surrounding cancer shape the narrative more than research or data. If you’re 60, chances are that you know a friend or two who’s survived; if you’re 17, all you know about cancer survival is from exploitative suffering porn like The Fault in Our Stars. Imagine your children entering puberty and starting dating without ever getting “The Talk.” But we seem to think that going into a life-changing surgery without a similar run-down on all the risks, benefits, and dangers of this complex set of diseases are fine. On a personal level, I was so naive at 17 that I thought neurosurgery would be preferable to chemoradiation, even though anecdotal evidence and personal experience suggest that surgery is far more dangerous and has more long term side effects than chemoradiation. And that’s not just me speaking; I have a friend with metastatic prostate surgery who’s on his fourth brain tumor, and, while he fully intends to undergo chemoradiation, he’s not sold on surgery. I can’t say I blame him. But, it’s indicative of how very messed up the general public’s perception of cancer treatments are that taking a hacksaw to the skull is somehow preferable to a chemical bath. The takeaway here isn’t that chemo is better than surgery — it’s that your perceptions about the risks and benefits of treatment are likely skewed going in, and you’re going to have to relearn and correct a lot of your preconceptions. Realistically, everyone in society is going to have to get better at our perceptions of cancer, starting with reframing the entire discussion as a “when” not an “if.” AYA survivors just get the brunt of it
Speaking of various errors in judgment, one commonality in a lot of survivors I’ve talked with — myself included — is how weirdly inaccurate people around us are. Virtually every relationship in our lives is upended at the word “cancer,” but here’s the exhausting part — people in our lives rarely react to our disease as we expect them to. It would be one thing if every relationship in our lives just got more intense — your spouse and family get closer, that guy you dislike at work becomes your mortal enemy, your boss becomes even more negligent. But that’s rarely how it splits, and that’s deeply upsetting in way that’s hard to communicate. Your spouse and family might recoil in horror at the thought of caring for you, and flee. That guy at work will become your mortal enemy. And your disdainful boss? That mofo will become your best friend and most vocal advocate, quite unexpectedly, because, when he was young, his mother got ovarian cancer, and he suddenly sees you. It’s weird.
Happy AYA Cancer Awareness Week.
