First, tho I live in the Philippines, I'm from Oregon in the US. I'll probably have my surgery there. The following is a taste of my dairy since my diagnosis.
I'd really love to start communicating with other guys about this -- there just isn't much of anyone to talk to. and for me, being young (I feel young!), the effect on my sex life going forward is really disconcerting, and depressing at times...
I'm amazed at the stories I read here -- either I'm a real wimp, or you guys are real troopers. see below...
Sorry if you don't like some of the language -- that's just me, and where I'm at...
- On Feb 16 I was diagnosed with prostate cancer. Fuck fuck and triple fuck!
- So scared and angry and afraid that the surgery will make me into a gelding it's not even funny…
- Worst news of my life
The doctor paints a pretty grim picture. Honest, but grim.
- He feels that my tumors are organ confined, which is good.
- Did a Bone Scan and a CT scan to check to see if the cancer has metastasized—it has not
- Wants to wait 6-8 weeks to make sure I'll all healed from the biopsy before surgery
- Looking at surgery maybe first week in June.
- Says after surgery 60% of men are functional (to varying degrees) with Viagra.
- Of the 40% who are not (damn that's a big percentage!!), there are things like injectable (ick!) drugs that work like Viagra, or implants (double-ick!)
- Of the 60%, "quality" of erections vary, and are usually less vigorous than before—GREAT! Wonderful news! (FUCK!)
- Much of the decision-making about never-sparing is made, of necessity, on the operating table. Great! Just great! I could go in functional, and come out neutered! Just Fabulous!
- What happens:
- 1 day in the hospital, catheterize (swell!)
- Go home—get to wear a diaper (Marvelous!)
- Have catheter removed at about 7 days
- 1 month with no sex, but on Viagra the whole time—fabulous.
- Then try sex (with physical stimulation, forever), and see what happens…
I don't have a lot of options -- at least not good ones. Second opinion doctor pointed out that I'm 58 and my libido will start to decline naturally pretty soon anyway. Gee -- neato! Well, let me tell ya, it ain't declined yet!. My wife started balling when we left the doctor's today. It was heart-wrenching and even a bit heart-warming. We hugged a lot in the hall of the hospital. We held each other in the car. It was good, tho I think I'm in a bit of shock (again) and fairly inconsolable. I appreciated it, and told her as much. But part of me didn't want to be touched. I feel like a pariah, like I'm evil, tainted.
So, life is pretty dismal. At times the disease overwhelms my thoughts, and I can do little else but fret. I have been doing more research.
Yesterday I found a website called YANA—You Are Not Alone. On Line support for guys like me. Lots of personal stories. While these do give me some hope, they are equally discouraging. Incontinence for 6 months, erectile dysfunction (ED) for all kinds of periods of time. Holy hell!
The song "Primitives" by T Bone Burnett speaks loudly to me about this cancer growing inside me…
Scientists guess which is worse we will ask
The medicine or the disease
The frightening thing is not dying
The frightening thing is not living
Which is worse in this case? The medicine or the disease? Christ, in this case the medicine means:
- Catheter for a week or so—lovely!—but bearable.
- Incontinence for a while. How long? Who knows. Gee, I get to wear diapers (ok, pads). There's a nice ego-boost! I bet they're not the least bit noticeable—HA!!
- No biking for a good long while
- ED—maybe permanently, and a definitely altered sex life no matter what!
Whereas the disease means:
- Still can have sex
- Someday it breaks free of the prostate, and
- Infects my lymph nodes
- Infects my bone marrow
- Which means a long slow death….oh fabulous! (But at least some real "life" in the meantime
Like I keep saying, I'm fucked. What I need to do is just "man-up". For the life of me I cannot see where this is going and WHY THIS????!!! And I am angry with god! Oh my! And disappointed! Beyond belief!
I had a thought the other day—saw myself riding the gurney into surgery with my fist raised yelling "I WILL FUCK AGAIN!!" And I kinda like it—empowers me.
The more I read, the less I know. Nothing but uncertainty. Most likely sex life is over. Complete and utter crap-shoot. Every story is different. And all the stories I read on YANA are so damned accepting: "Yep, got cancer. Decided to have me da surgery. Got that shit out of me. Had to wear pads for a while, but oh-well. No sex ever again, but by-golly got rid of that darn cancer, so….oh-well. Life's good."
Are you kidding? It can't be the whole story. Cliff Notes more likely. Jesus, they all take it like champs. Even have a sense of humor about it. WTF?! WTF is wrong with ME???!!! I'm losing my mind. I can't work, can't sleep—I've lost a lot of my appetite. Not just food but life itself no longer tastes good. Even losing interest in sex. Fuck!
I'm sitting at work writing this and just want to cry. I'm sooooo fucking depressed!!!!!!!!
I'm freaking out--totally. Gathering and sending medical records to insurance company and hospital in the US. It's just grim work.
The lack of a sexual future just destroys me….all that reading on YANA and other sites has kinda depressed me. It seems to be a complete luck of the draw—each person, each case is different, and so are their recoveries. Some guys are back to work, continent, and sexually functional (although usually it IS indeed different) fairly quickly—2 to 6 months. Other guys never get "better." NEVER. Christ, if they find that the tumor is involved in the nerves during surgery—GAME OVER!
- Terrified—not of the disease, but of the recovery---incontinence, pads, impotence (forever???)—or--Viagra, shots in the penis (WTF???), no more spontaneity
- Depressed—soooo afraid! Doomed
- Feeling that there is no choice
Part of me has (finally/kinda) accepted, or decided, or relented, to the cancer. I'll have the f-ing surgery. My family is more important to me than my sex life. But even as I write it, it hurts. I'm grieving a sex life I haven't even lost yet. And that's the crappy part of it---that the recovery is worse than the disease. And I have never had a single "typical" symptom:
- Weak or interrupted flow of urine-- No. Maybe not as strong as an 8-year-olds, but seems fine
- Urinating often (especially at night)--No
- Difficulty urinating or holding back urine--None
- Inability to urinate--Nope
- Pain or burning when urinating--No
- Blood in the urine or semen—Hell no
- Nagging pain in the back, hips, or pelvis—nope, except the small dull ache in my left kidney area that took me to the urologist in the first place
- Painful ejaculation—god no
And that really sucks. I feel great. Just a high PSA and the tumors the found. Wish I'd never gone to see the doctor about the kidney stone….
And there's a lot of really fu'ed-up issues involving prostate cancer:
- No one knows what causes it
- Most men die with some degree of it
- Few men actually die from it
- There is a tendency for "over-diagnosis" (early detection of non-threatening tumors)
- A tendency for "over-treatment" (surgery, typically) that can leave the patient with urinary incontinence, bowel function problems, ED—even infection or death.
- Unless it's progressed fairly far and is "aggressive," there is no hard data on whether it's better to have surgery or not—no data that says the span or quality of life is really improved (of course, tell that to your troubled wife or your life insurance company!)
Stilll, I can hear my wife talking about graduations, marriages, grandkids. And thinking that, sex or no, I have a lot to live for.
And that's the biggest downside to the cancer---fear that I'll be impotent….forever. Or even for a long time. And no matter what sex—my sex life—will be different. I cannot describe how much that sucks.
Just a note.
I've opted for ""watchful waiting."
Just couldn't stand the idea of the surgery--or actually, the potential side effects. Just terrifying.
Some part of me is resolved to do it, but I'd just as soon wait as long as possible (forever being the preferred choice! hehe)
Got another PSA in June 2015--11.58. Up again. Rats.
I've heard from one other YANA memeber--not exactly the outpouring of support I was hoping for...
Well, nearly a year since my diagnosis. I'm trying to think of it as buying back a year of "normality."
Since then my PSA has risen:
So there's really no bucking the fact that I am merely postponing the inevitable....
However, my urologist calls my cancer a "turtle"--slow moving--so still no huge rush, but the clock is definitely ticking.
I made a connection with a fellow who had RALP about 2 years ago, and he came thru it really well. Incredibly well:
His surgery was held on January 16, 2014, with both nerve bundles spared. He spent 2 nights in the hospital, with some abdominal discomfort, but walking the day of surgery. He received his pathology report 4 days after surgery indicating that all of his surgical margins were clear of cancer. His catheter was removed on January 27, 2014. He was able to resume intercourse in mid-February. 23 months after surgery, he does experience spontaneous erections. He still uses a VED and/ or Viagra but it is not "necessary."
We've been corresponding via email. My side sounds like this:
Ya, and an erection in the grave doesn't do me much good. Ok, fine.
Ya, I've got graduations and marriages and grand kids and travel to look forward to. Cool.
But to RISK going thru the rest of my like as an impotent, incontinent, and (therefore) curmudgeonly and surly bastard? Not sure--not at all.
Healthy--but (potentially) messed up. As in really messed up--physically, and even mentally/emotionally.
Christ it seems crazy that I'm saying "Yep, I might just rather die than go thru all that..." But I am.
(And here I could go into the "Die when?" debate. My cancer isn't very aggressive, and there's a reasonable chance that it might not be the thing that kills me. But that's a roll of the dice, and one which I have at least some control over....)
I'm trying to "man up" and face this thing, but not doing a very good job of it.
Been seeing a therapist, and she said I should "have more faith in modern medicine." She's got a point. Maybe everything will be ok....
How did you decide to do it? To have surgery? All the positive statistics aside, it's a complete roll of the dice: go under the knife and, while I have NO say in it (while anesthetized), decisions are made that, while perhaps life-saving, could affect the quality of my life FOREVER. Seems like the most outrageous gamble—and I am not much of a gambler….
I just can't see placing myself in a position where, by my own choice, I go in "normal and whole," and I come out (perhaps) incontinent and gelded. And I have NO say in the matter. I'm just not that brave, not that trusting."
In re-reading this, I feel it sounds stupid--self-pitying and even whiny. Sorry....."
And his response (much more matter-of-fact) was:
"How did I decide to DO it? I asked (the doctor) what HE would do at my age, with my biopsy results. He said that HE would have the surgery, because of my relatively young age. Watchful waiting, he explained, was a better approach for older men. That was all I needed to hear. And my wife heard the same advice and encouraged me to move forward quickly. My instincts were to delay for a while, but I listened to my wife and scheduled the surgery...
I do not mean to convey to you that it was an easy decision. It was terribly difficult. As you have indicated, on one hand I wanted to retain my sexual health and on the other hand I wanted to eliminated the chance of cancer progression/ and or death...
I decided to interview 3 surgeons and about 24 prostate cancer survivors before making a final decision about having surgery. I suppose that my approach was, "When in doubt, collect more information." I can tell you that I have heard that death from prostate cancer is a very unpleasant experience once it spreads to one's bones....
I can tell you that I have spoken to other men who have not been so fortunate. Their cancers spread, even at an early age, resulting in them having to seek radiation therapy and hormone therapy. These treatments have much more complicating long-term impacts. Sometimes, almost certain long term ED, loss of sex drive, and damage to adjacent organs."
To which I replied:
"I wish I could draw some more real, solid hope and optimism from your story as well--but there's a part of my brain that thinks "Oh, he's one of the lucky ones--and I am generally not...." (Deriving no hope—and increased fear—from his positive experience.)
In fact, everyone seems to think that I should have the surgery--but me. I'm just terrified.
And angry--at God, the world, you name it."
And so I am. Angry and just freaking out. Not sure HOW anybody makes this decision. The devil's alternative without a doubt.
I'm just and so riddled with fear about this I can't even express it in words. I am really soft-selling my feelings in the emails, try to act unafraid, but at least a bit mature about it. But I am not mature, not at all. I absolutely fucking hate that I have this disease! Mother fucker!! Why THIS??!! Why something that effects my sex life??!! WHY??? WHY GOD??!! I feel like my life is now completely over. Might as well suck a shotgun.
So I've been a wee-bit depressed about all that....hehe.
That's it for now....
Guys--just a quick update.
My PSA, and my cancer, are what my urologist called a "turtle"--slow. Grateful for that!
I really have come to believe that Dr. Vorstman's "attitude" about GL6 is the right track.
Altho I do take issue with him--I feel that GL6 is cancer.
And his "attitude" about over-treatment is also correct, IMHO. There is a big business treating this bugger, and I truly believe that the doctor's interests, not the patients, are getting top-billing.
GL6 is cancer.
But it is very inactive/slow/non-threatening/indolent.
All the research says that most men die with some degree of PCa.
Overtreatment is the norm--the pay-off is doctors driving newer and fancier cars.
So what do guys like us do?
Active Surveillance is the answer for me.
To this day I have had NO other symptoms (other than the elevated PSA and flunking my 3rd biopsy in Feb 2015).
It would seen that the consensus is that surgery fucks you up, plain and simple: ED and urinary problems galore.
Very few guys come out of it well.
Oh the cancer is (hopefully) gone, but the QOL is gone as well.
So my attitude is "why rush?"
If I stay on top of it (checking PSA regularly), I don't think it will sneak up on me, suddenly metastasize, and kill me.
Yes, there is a risk.
I turned 60 in December. And I still ride bikes (the kind with pedals!) like a maniac, scuba, laugh with my (college aged) kids, work long hours--and pee normally and have great sex.
And I'm not really ready to give up ANY of that.
And (by my definition) I continue to really live.
A couple of last notes:
- You'll see that a lot of guys push for the 3T MRI. I agree. It wasn't available to me in the Philippines. i will get one here, for sure. Non-invasive and good diagnostic tool.
- Besides surgery--cryoablation, HIFU, and some of the other less invasive treatments get more and more press, gain more and more traction (except, it seems with the insurance companies).
- Please look into those.
- The treatment of this shitty disease is progressing rapidly. New things being published all the time. Another rationale for waiting? Perhaps.
As far as food, I eat like always, which I think is pretty good--lots of stir fries, lots of veg, nuts, fruits--and sure, the occasional steak. I'm secretly addicted to Peanut M&Ms...but I do try to use some restraint....
I believe that eating well, occasionally enjoying a good cigar, and exercising are the best thing you can do, cancer or not. I also kinda feel that after 60 years, a sudden change in diet may not really make much difference. But that's me--a bit stubborn.
So that's the latest.
All my hope and prayers
Scott's e-mail address is: email@example.com