The American Society of Magazine Editors has announced its 2010 award winners, and I found it striking that three of the winning pieces address the issue of cancer. Over the past couple of years, we’ve heard more cautions about the downsides of aggressive screening for breast and prostate cancers – and then we occasionally also hear about the relatively young man or woman whose cancer is caught and treated early thanks to such aggressive practices. At the population level, we compile statistics about risk and survival rates, but those are easy to forget about when someone we love gets the dreaded diagnosis, or when we ourselves face becoming a survivor or a victim. These three writers confront the gap between what we know about cancer at the population level and what it feels like for an individual suffering from cancer.
Atul Gawande’s “Letting Go” (New Yorker; David Remnick, Editor) is about end-of-life care, and it includes the stories of two cancer patients. (My earlier post on it the article is here.) Sara Thomas Monopoli was an otherwise healthy 34-year-old with a new baby when she died of lung cancer; Dave Galloway was a 42-year-old firefighter with a three-year-old daughter when pancreatic cancer killed him. Galloway died peacefully at home, supported by his family and by hospice workers who helped him manage his pain and live his last few days as fully as possible. Monopoli had expressed a wish to die at home, but she and her family didn’t seem to realize how close she was to the end of her life – and so she died in a hospital, while receiving antibiotics for pneumonia and preparing for yet another round of chemotherapy.
Gawande notes that in a distribution of survival times following diagnosis of an incurable disease, most patients may live less than a year, but there can be “long tail” that includes people who survived for several years – and this is what both doctors and their patients tend to focus on and hope for. But that hope is unrealistic:
There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets–and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.
“I Want My Prostate Back” by Laurence Roy Stains (Men’s Health; David Zinczenko, Editor-in-Chief; Peter Moore, Editor) is the story of someone who seems to have beaten cancer, although he wonders about the price he paid. Stains was 57 when he had surgery to remove his prostate, after two elevated PSA tests prompted a biopsy and the biopsy found cancer in two of twelve samples. His piece intersperses findings from the medical literature with the story of his diagnosis, surgery, and not-quite-complete recovery:
I had no regrets. At first. I spent one night in the hospital, and 5 days later I taught a 3-hour class. Soon I’d quit inserting pink panty liners into my boxers. And urination became a reclaimed pleasure: I could piss like a racehorse, just like in my teens.
As for what’s clinically called “restoration of sexual function,” here’s my official report: I dunno. My marriage was a mess, so you can imagine the amount of sexual healing that didn’t happen. But plenty of guys’ marriages are, you know, meh–just okay. So I wonder: Do a lot of wives think this is a dandy time to close up shop? How many other wives make it a habit to come to bed long after he’s asleep?
I also wonder how much of the sexual wreckage is more than just nerve damage. Without any ejaculate, I feel like a broken toy. Like a water pistol that squirts jelly. (Or nothing.) If love ever comes my way again, I’ll sort of dread it. I’ll be a spectator at my own sexual rehab, and we all know what that does for an erection.
… Almost 8 months later, with my toy still broken and my heart breaking, I read the results of two huge trials that assessed regular screening–similar to what I received.
… In one of the NEJM studies, nearly 77,000 men from 10 U.S. study centers were divided into two groups. Either they received an annual PSA test and a digital rectal exam, or they received “usual care,” which may or may not have included screening. After 10 years, there was no reduction in the death rate for the screened group.
The other study followed 182,000 men in seven European countries. The 73,000 men who were screened an average of every 4 years for prostate cancer underwent 17,000 biopsies and had a 70 percent higher rate of disease. They also, not surprisingly, received much more treatment. According to estimates, 277 per 10,000 of those men underwent radical prostatectomy (versus 100 in the control group), and another 220 per 10,000 had radiation therapy (versus 123 per 10,000 in the control group). That’s a lot of treatment–with few lives saved. The study’s conclusion: If you aggressively screened 1,410 men, and cut or irradiated 48 of them, you’d save exactly one man’s life.
Christopher Hitchens’ three 2010 Vanity Fair commentaries (Editor, Graydon Carter) – “Topic of Cancer,” “Unanswerable Prayers,” and “Miss Manners and the Big C” – describe his thoughts both on the disease and on his interactions with well-meaning friends and strangers. Here’s “Topic of Cancer” description of chemotherapy:
The oncology bargain is that, in return for at least the chance of a few more useful years, you agree to submit to chemotherapy and then, if you are lucky with that, to radiation or even surgery. So here’s the wager: you stick around for a bit, but in return we are going to need some things from you. These things may include your taste buds, your ability to concentrate, your ability to digest, and the hair on your head. This certainly appears to be a reasonable trade. Unfortunately, it also involves confronting one of the most appealing clichés in our language. You’ve heard it all right. People don’t have cancer: they are reported to be battling cancer. No well-wisher omits the combative image: You can beat this. It’s even in obituaries for cancer losers, as if one might reasonably say of someone that they died after a long and brave struggle with mortality. You don’t hear it about long-term sufferers from heart disease or kidney failure.
Myself, I love the imagery of struggle. I sometimes wish I were suffering in a good cause, or risking my life for the good of others, instead of just being a gravely endangered patient. Allow me to inform you, though, that when you sit in a room with a set of other finalists, and kindly people bring a huge transparent bag of poison and plug it into your arm, and you either read or don’t read a book while the venom sack gradually empties itself into your system, the image of the ardent soldier or revolutionary is the very last one that will occur to you. You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water.
And here he is in “Miss Manners and the Big C,” after a woman at one of his book signings told him she knew what he was going through – because her nephew had died an agonizing death of liver cancer, and died alone after being disowned by virtually his entire family:
This was a surprisingly exhausting encounter, without which I could easily have done. It made me wonder if perhaps there was room for a short handbook of cancer etiquette. This would apply to sufferers as well as to sympathizers. After all, I have hardly been reticent about my own malady. But nor do I walk around sporting a huge lapel button that reads: ask me about stage four metastasized esophageal cancer, and only about that. In truth, if you can’t bring me news about that and that alone, and about what happens when lymph nodes and lung may be involved, I am not all that interested or all that knowledgeable. One almost develops a kind of elitism about the uniqueness of one’s own personal disorder. So, if your own first- or secondhand tale is about some other organs, you might want to consider telling it sparingly, or at least more selectively. This suggestion applies whether the story is intensely depressing and lowering to the spirit–see above–or whether it is intended to convey uplift and optimism: “My grandmother was diagnosed with terminal melanoma of the G-spot and they just about gave up on her. But she hung in there and took huge doses of chemotherapy and radiation at the same time, and the last postcard we had was from her at the top of Mount Everest.” Once again, your narrative may fail to grip if you haven’t taken any care to find out how well or badly your audience member is faring (or feeling).
There’s a great deal we have to learn about diagnosing and treating cancer, but Hitchens reminds us that we should also think about how we interact with cancer patients in non-clinical settings. He’s well aware of the unreasonableness of some of his reactions – feeling like his disease is unique, not wanting his friends to give voice to the things he’s fearing – but his pieces remind us that cancer patients don’t all feel like heroic soldiers.
The full list of 2011 National Magazine Award Winners and Finalists is here.
Thanks for pointing us to these quality articles about cancer patients. My own life has been touched deeply by living with and loving individuals with cancer. My first love Russell Lee Simpson Jr. (1954-1994) died from metastatic colon cancer, and my brother Lou’s wife Melinda Sue Fiott-Monforton (1957-1998) died from metastatic breast cancer.
These award winning articles help us understand the diversity of individuals’ experiences with cancer diagnosis and treatment. Despite all the great work that Lance Armstrong’s LIVESTRONG organization has done to raise awareness about and hope for cancer survivors, even individuals with great positive attitudes, a strong will to live, healing crystals, macrobiotic diets and all the rest does not save the lives of every cancer patient. Indeed, the cancer patients I loved did not feel like “heroic soldiers.” They just wanted to be free of cancer and get their lives back. Sadly, for too many, that doesn’t happen.