Here’s audio of an appearance on The Takeaway on public radio this morning about the American Cancer Society’s new prostate (PSA) screening guidelines, telling doctors to discuss the test and its implications first — the moral equivalent of the breast-cancer-screening shift of a few months ago. I disagree. As the n in a hundred whose cancer was caught by screening, I caution that the interest of the individual are not aligned with the interests of the aggregate — that is, it may not seem worth it to statisticians to save just one more life … unless that life is yours. For those coming in because of the show, my story is here.
Posts about prostate
I just had my three-month check-up after surgery for prostate cancer and the news so far is good: My PSA (a measurement of the antigen produced by the prostate, which shouldn’t be there once the gland is gone — unless cancer cells are elsewhere causing trouble) came in at <0.05, just what it’s supposed to be, I’m told.
In the interest of continued transparency for the sake of those who follow, here are the other updates (TMI warning):
When my surgeon, Raul Parra, came into the examining room at Sloan Kettering this morning, he said, “How are you?” I said, politely, “Fine, how are you?” And he replied, “No, how are you?” It’s the one time when someone really means the question. And the answer is that I do feel fine; I feel great, in fact. I get tired still and fellow patients warned in comments under my previous posts that’d be the case. But other than that and the two items I’ll go into next, I wouldn’t know I’d had major surgery only three months ago. The wounds are healed, the pain is long gone, and I can carry on as before.
My incontinence is almost over. Almost. Every time I have a few dry days in a row and think I am about ready to throw away the pads, I am struck down as if by God punishing my hubris … with a drip. Damn. If you see me in the halls suddenly grimacing in frustration and anger, that’s what happened. I’m hopeful I’ll be rid of the pads soon. But truth be told, if this half of the condition never got any better, I’d find it livable — far better than what I’d feared. For that, I’m grateful.
The impotence is another matter. Not a bit of progress there. And it’s not just that I can’t have an erection, it’s that the poor thing is chronically deflated, like the Balloon Boy’s craft at the end of its flight. I could be assured victory in a small-penis contest with Howard Stern. Yes, you know a man is talking about his penis when juvenile jokes start. Here’s how silly a man’s mind can get: I’m going to Munich in January and enjoy going to the (co-ed) sauna in the hotel there but I’m once again feeling like George in Seinfeld’s shrinkage episode. Yes, it matters.
I can have orgasms but they’re strangely muted, as if wrapped in cotton. And they are quite strange being dry (the seminal vesicles are removed with the prostate.) I’d also been warned about that. I was prescribed Viagra but stopped taking it for a bit when I was getting palpitations and I feared an onset of afib (my heart arrhythmia; don’t I sound like an old coot, recounting my ills?). I’ll try Cialis next. The doctor said the nerves he moved out of the way and spared in surgery can begin healing anywhere from three weeks after surgery (I’m not so lucky) to two years. I’ll keep my fingers crossed.
That trip to Munich comes on the way to Davos and this year I’ll be participating in a dinner about prostate cancer led by Dr. Jeffrey Drazen, editor-in-chief of the New England Journal of Medicine, and including Dr. Patrick Walsh, who, Dr. Parra explained to me, is the father of radical prostatectomy and the nerve-sparing procedure (thank you, sir) along with other leading doctors. What the hell am I doing there? I’m to bring the patient’s perspective.
I plan to say that publicness has benefitted me and that I wish the doctors would, in turn, be more public. The response I got from my posts here was helpful not only in the support I received but especially in the information I got from fellow patients who proceeded me and told me in frank and brave detail what I would experience. I owe them all. I’ve argued before that doctors should use the web to become curators of the best information they have. And together, the more we talk about this, the more we will bring it to the attention of men who should be screened and take away the mystery, fear, and stigma associated with cancer and surgery affecting our penises.
My bottom line: I am glad I was screened. I am glad I have written publicly about the experience. I’m glad I had the surgery. And I’m very glad today to see that less-than sign: <0.05.
My prostate cancer was caught with multiple PSA tests that weren’t out of the normal range but that were rising fast. That led to a biopsy, which found cancer in 1 of 12 samples, meaning it apparently was caught early. That led to surgery, which confirmed my malignancy but also that it was contained to the prostate.
I say, thank
god science for screening. Those tests gave me information I needed to make a choice. Without the information, I wouldn’t have had the choice.
But there is a growing rumble about curtailing screening, especially for the erogenous-zone cancers of the breast and the prostate. See today’s New York Times report on the debate about the efficacy of screening to save lives.
Note that plural: lives, not a life. This isn’t about me and my cancer. This is about statistics and money. The question they’re asking: Is it worth it to find these cancers and cut them out at considerable cost if we’re not sure those cancers would have killed all those people who had surgery? But who’s to say what’s worth it?
What if I’m the one in a hundred who would die without the screening and surgery? Only one way to find out: keep the cancer in me and wait. Indeed, I had that choice — “watchful waiting,” it’s called. But without the screening, I wouldn’t have had the information to know that was cancer was in me until it spread — until it was too late. I wouldn’t have known I had a choice.
As The Times points out, part of the problem here is that researchers don’t know whether some prostate tumors are more certainly deadly than others and I’ll agree that more research is inevitably a good thing.
But this discussion is really about playing the odds with my life – and who gets to roll those dice. I want to be the one who makes this bet. I want to have the information to make it. But implicit in this debate is the idea that insurance companies want to make the bet and they want to do it for everyone at once: “Let’s curtail the screening and see what happens. OK, so one more person in a hundred dies, but we also saved huge money.” Worth it? Not if you’re that one in a hundred. Not if that one is me.
I am 55 years old and in good health with a wife and two children. Faced with the choice of not knowing whether I had cancer, I chose screening. Then faced with the choice of leaving cancer inside me because it might not kill me (that is, something else could kill me sooner than this slow-growing tumor), I chose – my wife and I chose – to get it out. In my grandfather’s case, no other disease or accident got him first; his prostate cancer killed him.
My insurance company will probably pay $25k for my surgery to take out my cancer. I am now facing some inconveniences. Worth it? I’d say it is. Will the insurance company think it’s worth it? Don’t know. Don’t care. I don’t want them making that decision. I will make it. That is the point of having control of information about my health: my information about my life. That is the point of screening.
If this were a purely economic decision, then some would die. Imagine you’re Frank Purdue and you can spend $100,000 to save a few chickens worth $100 on the market; you won’t do it. But we’re not chickens. At some level, it’s always an economic decision, I know. That is why I support government involvement in health care. Yes, I’m a free marketeer when it comes to other industries, especially the press (because I’m also a First Amendment adherent). And yes, even when government is involved, it can decide not to spend money for expensive treatments or old people (the stories we keep hearing about the U.K.) – but at least then we hold political pressure over the government. Chickens don’t vote. Patients do.
As a matter of statistics and odds, I know screening results in treatment that adds to costs. But it also saves lives – no matter whether we know precisely how many. I believe screening saved my life and I chose not to have been proven right by waiting.
So get your screenings, folks, get ‘em while they last. I’m due for another damned colonoscopy (which I’ll get after my rump feels repaired from the damage of my last surgery) and I’ll get it because they found a polyp in me (benign) last time; I won’t take the risk. You should get your PSA tested, men, and your mammograms, women. And then you can make informed decisions – informed by data and your doctors. It’s the information that gives you the choice. That information is yours.
: MORE: This discussion also leads to the work Doc Searls has been doing with vendor relationship management and personal health records. We not only need the information, we need it in a form that is usable, and we need control of it — because it is, again, our information about our lives.
: Later: Andrew Tyndall of the Tyndall Report (and a friend and fellow prostate guy) reports on TV’s reports on the story.
You may not want to read this post. It defines TMI. But in the interest of continuing to chronicle the saga of my prostate cancer – for the benefit, I hope, of those who follow – the time has come to write about my penis. Specifically, what it doesn’t do.
Incontinence and impotence are two frightening words for a grown man but they are the side-effects of removing the prostate and its cancer with it. Worth the price, or at least that’s the calculation one makes beforehand: Cancer or erections? Cancer or dry underwear? Cancer loses.
I didn’t know quite what to expect of the incontinence and didn’t hear a clear description (maybe because I feared hearing it). I was dreading puddles on the floor. But it’s nothing like that. It’s a matter of dribs and drabs. I wish I understood the physical explanation of what’s happening but the end result is this: Sometimes, when you expect it (standing, coughing, lifting…) and sometimes when you don’t (that’s the tough part) you feel – in the excellent description of Howard Stern Show producer Gary Dell’Abate – something moving where it shouldn’t. Drib. Next time, you hope you remember to clench your muscles first.
When I left the doctor’s office after my hosectomy, I was outfitted in a gigantic Baby Huey diaper plus a pad – which only heightened my fear – but I quickly realized this wasn’t necessary and downgraded to pads. After much trial and, thank goodness, no error, I found my dream brand. I can’t believe I’ve become a connoisseur of such products but I recommend Poise Ultrathins. [Confidential to the FTC: That is not a paid commercial endorsement). I should also note that nighttime is not a problem at all; no latter-day bedwetting for me. So it’s inconvenient and distracting but as with every step of this process, I have seen that I’m luckier than I thought I’d be.
As for the penis’ other job, well, that’s not going so well. The nurse warned me not to expect anything yet (it has been four weeks since surgery) and so I suppose I shouldn’t be depressed. But it’s hard. Because it’s not.
We men have complicated relationships with our penises, of course. We follow them (that’s why they’re in front). They tell us what we like. They have minds of their own. We anthropomorphize them; some give them names (I don’t; it’s just it). So when I see mine looking like an emaciated, depressed, shrunken old man in a hospital bed, well, it’s hard not to empathize.
The doctor prescribed a quarter of a Viagra pill every night, to prime the pump, apparently. I have a page of standard instructions that suggest taking a whole little blue pill once a week and then to, well, have a go at it. Imagine being a teenager and being told that masturbation is a medical necessity. Doctor’s orders. Sounds like fun, but it’s not. Even when things start working (I hope) they’ll be weird, as a good friend warned me. Today, there’s sensation but there’s no growth and when and if there is liftoff, there’ll still be no semen (the seminal vesicles were taken out with the prostate). This is changed forever.
I’ll spare you further progress reports on these topics. As you can tell from my lame gags about my lame thing, this is about as much transparency as I can bear. I have found my limit.
(The rest of the saga is here.)
Is this a story or an ad? It matters.
I went to Radio Shack today to buy wires and plugs to hook up my iPhone because the damned car radio has no plug and the damned FM kluges don’t work. I bought the wrong wires, realized it immediately, and returned in minutes to exchange them. Radio Shack, as it its irritating habit, demanded my phone number, name, and address. I refused. It was a cash exchange. The guy hassled me and then, on the fourth attempt, finally told his computer that I’d refused, which he could have done in the first place. I cursed myself for not going to Best Buy, where they don’t take your blood type to make a transaction; one of the reasons I like Best Buy is its no-nonsense return policy. They care about satisfied and returning customers over irritating rules. I tweeted that here. Now I’m blogging about it.
OK, so I just said something nice about Best Buy and something critical about its competitor. Look on my disclosures page and you’ll see that I had a business relationship with Best Buy. A few weeks ago, because of my book, they paid for me to come speak to various groups over two days (which I quite enjoyed and which taught me a lot about retail, which I’ve been contemplating and want to write about).
So is what I just said about Best Buy an ad? An endorsement? A testimonial? Or just a story and my opinion? I leave that to you to decide and trust you with that decision. My integrity and relationship with you depends on what you decide. I disclose my relationship for that reason. I believe in transparency and recommend it – in my book – to companies, governments, and journalists. So is this story an ad for my book? That, too, is up to you to decide.
But now the Federal Trade Commission is getting in the middle of our relationship. It has issued vaguely worded rules – amazing that they’re still vague after 80 pages – that make we wonder and worry whether my disclosure is adequate – should ever tweet carry a caveat? – and whether Best Buy will make my observations accurate (what if they give a customer a hassle on a return and that customer complains I misled him?). Best Buy, in turn, might need to worry about what I say about them.
Note that if I were writing for The New York Times – if I were, say, David Pogue – the FTC would not regulate my speech in this manner. First Amendment, you know. The press. But as a blogger, I am now a second class citizen in my speech. The government casts its net over all citizens who now use the tools of the internet to publish – no, to speak. This is a corollary to the debate that’s going on right now over who should be covered under a federal shield law. Who should be under the FTC’s net?
On this blog, that’s my problem and I can handle it. But what about all the huge proportion of the population who are now using the tools of the internet to publish – or what publishers and governments would call publishing when most of them think they’re just using blogs or Twitter or Facebook or YouTube or what comes next so they can talk with their friends – what about them? Now they have to worry about missteps.
Some of you have argued that the FTC is going after deceptive bad guys and that’s good. But what are the unintended consequences? What if one of those unsuspecting “publishers” falls for PayPerPost as Pied Piper and becomes human spam but the FTC sees her as a flim-flam mom? Some of you are pointing to the FCC saying it won’t be mean and it can’t enforce all its regs anyway so we shouldn’t worry – yes, selective enforcement, that’s comforting. But another FTC guy said absurdly that people who review books should return their review copies or they could be in trouble. Which is it? You could be the one person who was fined huge amounts of money because your kid pirated music in your house; you could be the example. Don’t want to take chances? Figure you’re playing it safe?
Welcome to the chill. We all have our own FCC now. Broadcast is an exception to the First Amendment’s prohibition on regulating the press. Now bloggers are, too, because we’re not the press. But we are, aren’t we? See, there are bigger things at stake here than just a few fake Viagra ads. (Mind you, I’m not endorsing Viagra. It’s not working … yet. Now how’s that for disclosure?)
My surgeon called with the results of the pathology report on my prostate cancer. “It’s all good news,” he said. The cancer was contained to the prostate and had not spread to the lymph nodes. “As far as I’m concerned,” he said, “you’re cured.”
From the moment of my diagnosis, I knew I was lucky. This is a form of cancer for which it’s possible to say a beautiful sentence such as that, because it is slow-growing and can be contained and taken out. That’s why another doctor told me when he gave me my diagnosis that if you’re going to get cancer, this is the one to get. That doctor caught it early and enabled my surgeon to get it out. Lucky, indeed.
Three months from now, I’ll get a PSA blood test again – the test that discovered my cancer. The hope – no prayer – is that the results will be nil to negligible, for if there are prostate cancer cells elsewhere in the body, they’ll be producing PSA. I’ll keep doing that for the rest of my life.
So far, so good.
: LATER: Here’s Richard Edelman a year after his surgery.
It has been a week and a half since my prostate surgery and I’m doing great. I’m walking a couple miles a day (can’t run for a few weeks but even when I do run it’s not running), eating normally, sleeping well, now able to sit and stand and cough and burp without feeling as if I was hit in the belly with a Volkswagen.
I just returned from my hosectomy: the last dread. After everything else one goes through, this is the least of it. But I am damned glad I didn’t know just how long a Foley catheter is; I’m surprised I didn’t choke on it. The nurse fills the bladder with saline, then deflates a balloon also filled with saline (which is what keeps it in), then pulls, and then it’s my job to catch what comes out in a jug. “Just don’t get my shoes wet,” she says, “they’re expensive.” Mission successful. An hour later, I just went to the bathroom for real. Mission successful. Life is good.
But it turns out my pharmacist was wrong: I will be wearing man diapers for a few weeks along with a man pad inside – the belt and suspenders of the urologic trade. I feel as if I’m walking around with a padded codpiece – which is ironic, considering what’s still not going to be happening for awhile in that department.
They tell me it’s going to be a difficult few weeks and then it will start getting better over the next few months. That’s why I’ve canceled trips – that and I am still recuperating. The one thing I heard from people who’ve had my same robotic surgery is that you feel too good and then push it and then regret it. Today’s a case in point: I was determined to go into Manhattan for my class but my wife and my substitute, Steven Johnson, convinced me I was wrong.
Bottom line: The new normal is looking more like the old normal every day. I remain very lucky.
Few of you should care but for those who do, here’s a chronicle of my experience in robotic surgery for prostate cancer. I post it here mainly for the ongoing Google value to those who follow me into the O.R.
At 9a Monday, I walked into the bright operating room at Sloan Kettering and faced the robot. Pictures of it on the manufacturer’s web site make it look small, like something that might screw in radio knobs on a Cooper Mini: friendly. In person, the robot is huge, like something Sigourney Weaver would defeat in space: imposing. I saluted it and backed away. Its arms stood at ease, each covered in plastic to maintain its sterility. I also saluted the surgeon, Dr. Raul Parra, who works many feet away at a console that gives him a video view inside me – much magnified – and delicate control of the five arms poking inside my belly. They also pump me up with CO2 to give the robot room to work and the doctor room to see. One friend made reference to me becoming a Macy’s Thanksgiving Day Parade balloon and envisioned shooting me down over Broadway.
The waiting-room nurse told my wife that they put patients under anesthesia an hour before surgery begins because that’s how long it takes to set up the robot and patients tended to get a little freaked seeing an alien beast assembled over them, ready to drill in. It’s one matter to be scared of needles, another to stare at a robotic arm with electric scissors on the end.
While he’s inside, the surgeon tries to peel back and preserve the nerves that encase the prostate because they’re the ones that enable erections. In some proportion of cases, the patients get that magic talent back; in some cases, not. That’s why doctors now prescribe Viagra before and after (“use it or lose it,” another doctor said to me – a new answer to, “not tonight, dear, I have a headache”). The surgeon takes out the seminal vesicles, which means that orgasms, when and if they return, are no longer messy. Out go a few lymph nodes. And, of course, out goes the prostate and a piece of the urethra with it. That’s why men also have problems with continence. “We have to re-potty-train you,” said my doctor’s nurse.
After surgery, the doctor said my cancer appeared to be contained to the prostate. That’s the key question. If it is, then my PSA – which was rising and led to the discovery of my cancer – should fall to nil. If it isn’t contained, then the cancer can spread to the bones (that’s what killed my grandfather) and then treatment could include radiation and hormones (to cut off the testosterone that feeds prostate cancer).
When I woke up in full morphine-induced stupidity, I had five small holes in me – the largest just big enough to bring out the prostate – and two drains, one in my side (which was taken out before I left the hospital – a very eerie experience, having a foot-long french drain pulled out of your belly), the other where I had been dreading it. When I scheduled surgery, the nurse volunteered to show me a Foley catheter. I declined. Funny, she said, everybody does. In my mind’s eye, I saw a thin stick up my dick and that was bad enough. But I woke up to find a garden hose coming out of my penis (the subject of one of my earliest tweets once I got my iPhone and lucidity back). As the Howard Stern Show’s Gary Dell’Abate told me about his stent up there, the problem isn’t so much pain as feeling things move where they shouldn’t.
I wrote a Guardian column about choosing to reveal my cancer on my blog and the benefits that come from it. There’s no greater symbol of giving up privacy and embracing publicness, I think, than writing about one’s penis, especially when it malfunctions. But in the hospital, I lost every last vestige of modesty. There’s just no point. Nurses need to fix things there and give instruction on how to cope with the catheter and you are completely, utterly exposed. There’s a young, female nurse, speaking at eye-level to my penis telling me what to do with it as it sits in extreme repose. Think Seinfeld’s shrinkage episode; cold water and catheters have the same effect. By Tuesday, my last bit of third-grade immaturity about the subject of penises died.
Now I have to manage my catheter. Warning: appetite spoiler coming. As my wife said to the kids, “Daddy’s going to be disgusting for a few days.” I have to empty and change a bag strapped to my leg during the day and a bigger one that hangs by my bed at night (but it’s not big enough to get me through the night and let me tell you, you don’t want this thing to back up). As with all challenges, once you’ve faced it, it’s not as daunting as the dread.
My pain isn’t awful, either. I have enough Vicodin to keep Artie Lange or House happy for a month but so far I haven’t used any, just one sleeping pill to date. It hurts my stomach to stand up and lie down – and, gawd, you don’t want to burp or cough and I don’t want to know about sneezes – but that’s momentary. It’s really not bad.
If I had chosen radiation instead of surgery, I would not be dealing with problems of plumbing malfunctions now, but there’s a chance those could come in a few years. And it’s also not possible to be assured that the cancer is gone. There’d be more hanging over my head. So at my age, I’m still glad I chose this course: out, out, damned spot.
I’m well aware how lucky I am. Prostate cancer can be cured; the treatment has its inconveniences but nothing next to so many other forms of the disease. Mine was caught early but my timing was good insofar as robots had been invented and perfected. My unit at Sloan Kettering was filled with nothing but prostate cancer cases like mine. My wife sat in the lobby and saw parents wheeling in a child’s dolls and books for a long stay. That’s what makes the place break your heart. My inconveniences are easily put into perspective.
As I finish this post, it’s Thursday afternoon. I’ve slept through the night, avoided most plumbing disasters, just took a mile walk (at a crawl’s pace), am eating well, and have even had a first glass of wine. I’m probably doing better than I thought I would. One friend took over my class this week and another will next week, but in a fit of optimism, I hope to have my hose-ectomy on Wednesday morning and then go into the city for school that afternoon. We’ll see. In any case, it’s good to have cause for optimism.
I’ll continue to update you on my condition, as warranted.