Small c update: <0.05

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.

  • http://stevebuttry.wordpress.com/ Steve Buttry

    I’m a cancer survivor who believes you can’t have TMI about cancer screening, treatment and recovery. Thanks for continuing to share so candidly, Jeff. And here’s hoping you have more good news to share (or keep you yourself) soon about the lingering issues.

  • JP

    I’m 26 and never knew a lot of these practical considerations about pancreatic cancer. Thanks for taking back the veil of secrecy.

  • http://jeanpaul.carmona.free.fr/ Jean-Paul Carmona

    Hi from France!

    I’m just reading your book for now and looked at your blog for curiosity
    And I’m happy to see that your happy & wealthy!

    I work since 1996 on Internet technologies and I realized a few years ago how stupid I was to never catch the opportunities in front of me. Your book make clear a lot of things that I see in live every day since a long time.
    Thanks a lot.

  • http://filipstad.ifolkmun.se Jocke

    I wish you further progress and a happy life.

    / A Swedish fan.

  • http://www.stealthmode.com francine hardaway

    My husband’s erections never came back, although he, too, could have orgasms. He wanted to have intercourse, so he went and had a penile implant. You can get them in several kinds and sizes, and he got the kind that was permanent (not a pump) and made him half erect all the time. It worked great. Do whatever makes you happy:-)

  • http://andreasekstrom.se Andreas Ekstrom

    Hi Jeff, my name is Andreas Ekstrom, I am a Swedish reporter and author, currently hard at work writing the first book ever in Swedish about Google. I have had tremendeous help from reading WWGD? and will quote it here and there. And I am, of course, a regular here at the old Buzzmachine.

    I just thought I’d drop you this note to say thanks for all of your hard work, and to congratulate you on your personal courage facing the big C. You are winning!

    Best regards from Sweden,

    /Andreas

    http://weylerforlag.se/Google-koden.html

    http://weylerforlag.se/Ekstrom.html

  • http://www.newsafternewspapers.blogspot.com Martin

    Jeff, as a fellow prostate-c patient I counsel patience – there’s a lot more improvement generally after the 3 month point; I didn’t feel totally myself until sometime in the second year. Hang in there!

  • http:///www.mattsnod.com Matthew Snodgrass

    Glad to hear. Even though you may not believe in it, I’ll continue to pray for you. And thanks for empowering other men to focus on this issue!

    Best
    -Matt

  • http://fitzandjen.com Mark Fitzgerald

    Jeff,
    The best advice I got before my surgery for prostate cancer in September 2008 was not to beat myself up, and try to rush things. Of course I ignored that on the supposition that if normal was X, then I would accomplish normal in 1/2X. Doesn’t work out like that. If you’re already having dry days, you’ll be throwing the pads away in a couple of more days. As for the shrunken dick syndrome, it gradually comes out of its shell, or maybe at least the perception that it’s getting back to normal is what’s growing. Physicians in this area disagree on a lot of things (robodtics vs. “open” surgery most of all) but some believe Viagra/Cialis is ineffective early on because the nerves are not yet firing. One way to get erections right away (and here’s a TMI warning of my own) are injections of so-called “bi mix” of Papaverine/Phentolamine into the penis. Everyone will tell you that as horrifying as it sounds, it really doesn’t hurt — and they are right. The needles, of the type2 diabetes type, are quite thin and there is no pain on injection. There is, of course, the huge psychological barrier of stabbing your good buddy when he’s down. The drug brings oxygen-rich blood down there, creates real erections and is believed to speed the healing of the nerves. Blue Cross covers the drug and supplies, btw.
    Welcome to a huge fraternity of the prostate-less. We’re everywhere.
    best,
    Mark Fitzgerald

  • http://andforeveryoung.blogspot.com/ Stay forever young

    Wow, difficult stuff to share. As a dribbler and a neurotic, I’ve more than a few times been worried. As a physician who works in Palliative Care, I only see a few of the cases, but they leave an impression. I recently put my wife through hell when I convinced us that my headaches were likely from a tumour. CT scan revealed normal brain. Unfortunately abnormal function! Hang in there, and thanks for the candor.

  • http://www.drjohngordon.com John Gordon

    I had surgery on 12/24/07. I also thought that I was SuperMan and would recover without symptoms quickly. Someone else had different plans. Dribbling stopped eventually and orgasms are like feathers. Kind of disappointing, but I’ve got my life. Keeping all in perspective, we give up a little to keep our lives and gain a lot.
    Good luck and have a great Holiday Season.

  • Jack Evanworth

    Extremely thankful to you for your honesty. I am also glad that the beautiful Francine, above, doesn’t seem to mind too much what happened with her husband. But a single man your age may just decide not to go the surgery route. The single women in their twenties would not necessarily be like Francine (although her photo looks like she is in her 20s).

    BTW, the hotel saunas in Munich would mostly be empty. Try Dantebad. It is built around the diving pool from the 72 Olympics which is now a 50 yard outdoor pool that steams in the winter (your hair will freeze running from the pool to the saun). No man gets a reaction there anyway because the brain tells him not do dare.

  • Jack Evanworth

    This whole nightmare decision may soon not have to be made by human beings torn between their sex life options and their life options. Twitter is abuzz today about a promising hunter-killer antibody study:

    http://digg.com/general_sciences/Scientists_Find_Antibody_Hunts_and_Kills_Prostate_Cancer

  • Pingback: The German privacy paradox « BuzzMachine

  • kenmeer livermaile

    As Robin Williams, naked in Central Park in the movie The Fisher King, hollered, “Free the little guy!”

    Plus: you’re not bald.