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December 30 2011

22:23

Very public health

Watching the remarkable Xeni Jardin tweet her mammogram and cancer diagnosis, then blog eloquently about it, then crowdsource opening up her own MRI data makes me ask: Why are we so secretive about sickness and health? And what do we lose because we are?

The answers to the first questions are fairly obvious. First, we keep our sicknesses secret, we say, because we fear we could lose insurance. Except insurance companies force us to reveal our medical histories anyway. And let’s hope that Obamacare — may it survive the Supreme Court — succeeds in outlawing the denial of health coverage due to preexisting conditions. Next, we fear that we could lose jobs. Except in cases where a condition would affect job safety, shouldn’t employers be told that they cannot discriminate on the basis of health? Whether or not society chooses to address these issues through legislation, my point is that it’s possible to do so.

The other reason we keep sickness secret — the bigger reason — is stigma. We don’t want people to know we’re ill. But in this day and age, why should anyone be ashamed of being sick? To be clear, I am not saying that anyone should ever be forced to reveal health information. But why should our norms, stigmas, and economic considerations force us not to reveal it?

Imagine if we didn’t feel compelled to hide our illnesses. Imagine if we could be open about our health. What good could come of that?

We could learn more about correlations, which could yield information about causation and even cures. Given large data sets, we could find out that people who get a disease share common behaviors or characteristics. We might gain the opportunity to discover an environmental cause to a local outbreak of, say, breast cancer, enabling a community to fix the condition and prevent more cases.

Of course, I want to emphasize the conditional: correlation *could* help. One data point is never meaningful: That I’ve contracted one heart condition and two cancers since being at the World Trade Center on 9/11 is meaningless — unless there are many others in the same boat, and even then, one mustn’t jump to conclusions about causation. Still, more data is always better than less.

With openness about health, we could do a better job connecting people who share conditions to get information and support and each other. I am on the board of Learning Ally, formerly Recording for the Blind and Dyslexic, and at our last meeting, I was struck by the barriers that stigmas put in the way of young people getting the organization’s help. I heard how getting our software on iPods has helped more kids use the service because they no longer have to carry around a special device that marks them as different — stigma. I heard a mother say that school officials warned her that her child would be labeled — stigma — if she got him appropriate services, but she said she’d eagerly embrace the label if it got her son the help he needed.

On my blog, I’ve been in a debate about the recommendation by a government panel that men shouldn’t be given the blood test for prostate cancer anymore because, statistically, it hasn’t been shown to save lives. That’s because medical science can’t yet distinguish between fast- and slow-growing prostate cancer. I say men should get the test. I say we should be talking openly about our prostates as women have fought to talk about breast cancer. More information and communication is always better than less.

The real question is what men choose to do when they find out — through a biopsy following the blood test — that they have cancer. Perhaps more men should choose what the doctors call watchful waiting over surgery. But, you see, the problem is that we don’t have *enough* data to make a good decision. I want to know, based on the largest possible population, how long it took prostate cancer to spread after it was found. Then I could decide how long to watch and wait. But I don’t have that information. So I chose to get the cancer out of me. I could make that choice only because I had the test. I had my own data. If I had the data of millions more men, I could make wiser decisions.

How could get get more data?

Step one is to encourage men to talk about their prostates — and, yes, sorry, their penises — so we disarm the stigma about it and get more men to be aware and get tested and share their experience.

Step two is to create the means to open up and share as much health information as possible so researchers, doctors, and hackers can dig into it and find correlations and patterns and questions worth pursuing, perhaps leading to answers.

When I talk about the principles of an open society in Public Parts, this is what I mean. Rather than reflexively declaring that sharing information about ourselves — our bodies as well as our thoughts and actions — is dangerous, we must stand back and ask what benefit could come from such data, now that we have better technological means to open it up, gather it, and analyze it.

Only then can we balance the benefits and risks and decide, as a society, how open we want to be, how open we should and need to be — and why. That is the kind of discussion about privacy and our changing norms I’d like to hear. Let’s not just talk about what can go wrong now but also what could go right.

October 07 2011

14:49

My cancer is not random, it’s mine

There are three things profoundly wrong with a U.S. government panel’s recommendation to end blood tests for prostate cancer.

First, what does stopping the test do for a man? It makes him ignorant of what is happening in his own body. It makes him incapable of making a decision about his own health and fate. Since when and how is a lack of information better than information?

Second, prostate and testicular cancer are curable when caught early. Why the hell would we not continue to try to detect these men’s diseases?

Third, the panel treats men as a statistical pool, not as individuals. It says that overall, the test does not reduce deaths. Whether or not that’s so is of no concern to me. I’m not member of a pool or a data point in it. I’m not random. I’m one man with one prostate. It was cancerous.

The problem here is that medicine cannot yet detect the difference between fast-spreading — and often fatal — prostate cancer and slow-spreading tumors that take so long to grow that oftentimes something else kills their hosts first. So, yes, some tumors are taken out that would not have killed a man. But there is no way to know that.

So who wants to take that gamble? Not me. I had prostate cancer. I was told I could react with “watchful waiting.” But I chose not to. Of course, I did. Informed I had cancer in my body, I had to get it out. I have a responsibility to my family to stay alive so I can provide for them (among other things, I hope). I also have a responsibility as a member of an insurance pool to get a disease treated earlier and for less, if possible. If I let the disease progress, it could involve extremely expensive treatment — radiation, chemotherapy, hormone therapy, hospitalization — for a cancer that spreads from the prostate to the bones to the rest of the body. I know. That’s how my grandfather died.

Does the surgery have side-effects? Oh, let me tell you, it does. I’ve made no secret of them — quite to the contrary, my publicness about them inspired me to write Public Parts.

It has been two years since my surgery and I owe you an update. I am still impotent. I have tried Viagra and Cialis to no effect other than indigestion. I went through the ordeal of shopping for and buying a penis pump (once again being nice to my insurance pool by not buying the one that’s overpriced for those bringing prescriptions; I bought the exact same thing for much less with my own money). It did nothing but mangle and misform my already abused penis and cause pain. I am getting ready to get trained in the art of sticking a needle in my dick to make it engorge, if it still can.

Oh, yes, there are side-effects. The government wants to protect me from them while not protecting me from cancer, a cancer that could or could not kill me, no one knows.

That is my choice. It is a choice I can make only with information, information about my body the government now wants to keep from me.

Wrong. Profoundly, fatally wrong.

January 21 2011

20:47

Cancer, the sequel

I’m either a two-time loser or a two-time winner, depending on how I fill my glass.

I have cancer again, this time in the thyroid (last time in the prostate). I had half of my thyroid taken out in 2002; it had no cancer. The second half was just excised (I’m running out of spare body parts). Just got the pathology report. Unfortunately, it did not include the most beautiful word in the English language: “benign.”

But it did include what may be the second-most comforting word: “contained.” My Sloan-Kettering surgeon said that because the tumor was small and contained, he’s not going to move to the next common step in treatment: radioactive iodine. He’ll watch it with sonograms and if something does grow back, I’ll be glowing in the dark. So now, every six months, we’ll track my two cancers, hoping for no reruns.

I debated whether to blog about this, just because at some point, you needn’t care about my ailments and I am wary of sounding like I live in the old folks’ home (you know the joke all your grandparents have told: time for the organ recital). I’m also quite aware — especially after seeing my fellow patients in the hospital — that I have cancer lite; beside my roommate, who had Steve Jobs’ reported first operation, the ominous Whipple procedure, I have a paper cut.

I believe in sharing if there’s something to be accomplished with it. So I come back to that word: “contained.” In both these cases, my cancer was contained because, thank goodness and modern medicine, it was caught early.

So that’s the moral to this story: Go see your damned doctor if you haven’t recently. My thyroid got swollen the first time around and that’s what led to surgery and then monitoring. My doctor testing my PSA caught my prostate cancer. I’m overdue with a colonoscopy — and sure as hell do not want a hat trick. But I will go as soon as I can. You should, too.

Before my thyroid surgery, I told you that there was a risk of damage to my voice. My foes will be sorry to know that I am still in full voice (and temper). The last time I had the operation — it’s rare that one can perform consumer comparisons — my throat hurt like hell for more than a week but this time not. There are two more splashes in the glass, over the half mark.

I’m blessed that the cancers were caught and contained. It’s creepy knowing that some leftover rogue cells could come back and wondering whether other brands of the disease are building elsewhere. Yesterday at a conference on privacy, someone used that word to describe online tracking and sharing: “creepy.” Ad targeting is not creepy. Cancer is. But I keep reminding myself where my glass is.

I’ll give you an update about my prostate another day.

I appreciate every time you, my friends, wish me well. But I’m not fishing for that so you needn’t. Instead, please go see your doc. It’s check-up time.

March 05 2010

12:08

Get your PSA checked, men

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.

December 17 2009

22:07

Small c update:

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.

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