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Posted 10/29/2015 8:07 PM (GMT 0)
Having a bad one today, talking with my wife...

"You have to worry about the things you CAN control, not the things you can't"
"You have to make your choices and live with them, there's no point in regret"

This has come about because with my biopsy now pending I realize that I 'might' be down to the last few 'normal' orgasms I ever have on this planet - depending upon the result. I'm a planner, I don't do well open-loop.

While these statements might look good on one of those dumb-ass Facebook quotes with a freakin' butterfly or pony, they ain't helping me, I'm going... nuts.

My problem is that I have serious doubts that I can 'live' with draconian SE's... and that anxiety colors my view of treatment, in fact I even have 'none' wayyy up my list. "We tend to treat younger men aggressively says my Doc"... faaaaaaaaaark.

Yeah I know... I don't know yet, but with a PHI of 47.5 and PSA 1>8.5 in 12 months you don't have to be a rocket scientist to figure I likely have some nasty coming at me.

Ack... I'm having an Island Time moment... sorry guys, gotta shout/scream/cry at someone and my Vulcan wife isn't it.

Paul cry

Post Edited (Paul65) : 10/29/2015 2:11:17 PM (GMT-6)

Posted 10/29/2015 8:24 PM (GMT 0)
Ranting and complaining is allowed. You're facing life changes you don't want. Sucks, what else can be said.

Except that you'll find a way to adapt and you'll survive.

but it won't be easy to get there and parts you're going to hate.

Hang in there, we're here when you need scream.

Andrew
Posted 10/29/2015 8:36 PM (GMT 0)
..
Having watched the latest series in "The Truth about Cancer", I can only commend that series as a good reflection on all cancers..
Years ago I reported about a friend with your dilemma, and how he had Bx confirmed.PC, but he refused treatment and religiously consumed an asparagus smoothie every day, and when he finally went back to his Uro', another Bx showed "no PC detected"

This experience supported what is said in TTAC..

Ultimately, a life without normal intimacy, is better than no life, and I would think and hope that your wife would prefer alternative intimacy and YOU, that the other alternative..

I wish you a clear mind to think things through..

PS... I had the RP, and I learnt that the doctors lied about subsequent intimacy predictions, but I am still here over five years later, with a PSA of ZERO, and WE now follow many of the concepts of TTAC..
..
.

Post Edited (BuiDoi) : 10/29/2015 2:47:24 PM (GMT-6)

Posted 10/29/2015 8:58 PM (GMT 0)

Paul, you said...
[ you ] 'might' be down to the last few 'normal' orgasms [ you ] ever have on this planet

Actually, the abnormal ones are pretty good if that's any consolation.

Prostate cancer treatments often pose sexual challenges that need to be worked around. There is sex after prostate cancer. Some treatments are worse that others in that regard, and they all take a bite out of you but, with one exception, they can usually be managed.

It sounds like some sort of whiz-bang radiation treatment might be a good choice for you if it turns out you need treatment at all. The sexual side effects of radiation may be less than from surgery and they come on more gradually.

What you want to minimize (and the exception I mentioned above) is Hormone Therapy. HT almost always tends to shut a man down. There are some guys who say that since HT suppresses desire at the same time as it quashes ability they don't mind it. I am trying to stop assuming they are lying... trying to stop... but they are lying... must be... it sure bugged the crap out of me, anyway.
Posted 10/29/2015 10:57 PM (GMT 0)

Paul65 said...
PHI of 47.5 and PSA 1>8.5 in 12 months you don't have to be a rocket scientist to figure I likely have some nasty coming at me....

That PHI score according to Innvative Labs has an accuracy of 71%, and puts you in a range of 1 in 3 probabilities of having a positive biopsy.

And, 8.5 PSA would concern anyone, particularly with that rise.

But, even at that level the PHI presumably is more accurate.

I think part of your distress may well be "not knowing."

Hang in there till you get the biopsy and we're gonna be here to help you sort things out.
Posted 10/29/2015 11:03 PM (GMT 0)

BuiDoi said...
..
Having watched the latest series in "The Truth about Cancer", I can only commend that series as a good reflection on all cancers.. WE now follow many of the concepts of TTAC..
...

I looked that up and went to the website and there are a large number of videos.

Is there a particular series or several that you would recommend?
Posted 10/30/2015 12:07 AM (GMT 0)

InTheShop said...
Ranting and complaining is allowed. You're facing life changes you don't want. Sucks, what else can be said.

Except that you'll find a way to adapt and you'll survive.

but it won't be easy to get there and parts you're going to hate.

Hang in there, we're here when you need scream.

Andrew

Absolutely! This year has been the most stressful in my adult life and it helps to talk about it, either in person or with your extended 'family' here.
Posted 10/30/2015 1:06 AM (GMT 0)

Paul65 said...
Having a bad one today, talking with my wife...

"You have to worry about the things you CAN control, not the things you can't"
"You have to make your choices and live with them, there's no point in regret"

This has come about because with my biopsy now pending I realize that I 'might' be down to the last few 'normal' orgasms I ever have on this planet - depending upon the result. I'm a planner, I don't do well open-loop.

While these statements might look good on one of those dumb-ass Facebook quotes with a freakin' butterfly or pony, they ain't helping me, I'm going... nuts.

My problem is that I have serious doubts that I can 'live' with draconian SE's... and that anxiety colors my view of treatment, in fact I even have 'none' wayyy up my list. "We tend to treat younger men aggressively says my Doc"... faaaaaaaaaark.

Yeah I know... I don't know yet, but with a PHI of 47.5 and PSA 1>8.5 in 12 months you don't have to be a rocket scientist to figure I likely have some nasty coming at me.

Ack... I'm having an Island Time moment... sorry guys, gotta shout/scream/cry at someone and my Vulcan wife isn't it.

Paul cry

Paul, it is remarkably simple(or at least I feel it is so in retrospect). Not only have you not had your Bx yet, but no matter what it shows: you don't have to have surgery! Just say no! Even assuming that you actually have PC, and that your #s are wrong for AS or you just can't go that route, and thus you must have some aggressive/curative treatment, don't have surgery! Start researching various types of RT now, before you are even diagnosed. There is absolutely no reason why you can't do that rather than surgery.

Now can you end up with some bad SEs from RT? It is certainly possible, but it does seem that the odds of serious sexual SEs are way lower. So just don't do it. Insert Seinfield's Soup **** voice right here: NO SURGERY FOR YOU!

See how easy that is?

EDIT: oh good grief, I was censored describing the soup guy on Seinfield, whose title which started with an N was used by certain unpleasant Germans 70-75 years ago! turn
Posted 10/30/2015 1:52 AM (GMT 0)
Paul, Your wife sounds just like mine. I am the "what if" guy and she is the "everything will be okay" person. You will figure it out. She's probably worried about you and doesn't want you to go nuts. I know my wife loves me, but we sure drive each other crazy! Haha.

Paul
Posted 10/30/2015 1:17 PM (GMT 0)
Paul, I think the post above that mentioned the fact that you might be just suffering from anxiety of not knowing, is spot on. Wait for the biopsy, whatever it shows, you'll be surprised at how much stress and adversity we humans can handle. Not saying it's easy, but it's manageable.

And don't automatically assume you will suffer from all the side effects from any treatment that might be needed, whether surgery or radiation.
Posted 10/30/2015 2:02 PM (GMT 0)
Thanks guys, thank you, thank you, thank you...

Despite what anyone may claim, or however much they love us, you have to have been here to deeply understand.

I drank a bunch of IPA last night, woke up this morning, read your words, put 'Kashmir' on very, VERY loud and worked out like I was trying to kill myself. I'm smiling again now.

It's just amazing how a problem shared is a problem halved...

Paul
Posted 10/30/2015 2:43 PM (GMT 0)
It's a tough road no doubt, I went through the exact feelings your describing. My wife was amazingly supportive of me, but I found that eventually I had to stop feeling sorry for myself, and quit worrying about the sexual side effects. It will eventually stress your marriage, or at least it did ours.

I'm almost at 13 months post op, and while things are a very gradual pace to recovery, I can honestly tell you that while the O's are different, for me their more intense. I now believe that PCa was causing me to have mild discomfort, that I just didn't realize was from PCa.

Best of luck
Posted 10/31/2015 12:13 AM (GMT 0)
Re Kashmir
Wouldn't Stairway to Heaven not have been a more appropriate song?
:-)

https://www.youtube.com/watch?v=LFxOaDeJmXk
Posted 10/31/2015 12:45 AM (GMT 0)
Kashmir fits the bill for how I remember that period.
Posted 10/31/2015 1:10 AM (GMT 0)
... That's one stairway I'm trying to avoid!
Posted 10/31/2015 1:36 AM (GMT 0)
I understand your feelings....But, you know what I lost my "normal" sex life at 42...and that was after being in bad marriage that was sexless for over 7 years.....I got screwed without even being screwed. But not compared to some people my boss knows who just buried their 8 year old child from bone cancer....Your what 65? Sometimes you have to look at how good of a run you had....none of us are getting out alive and we are all going to have to face the reaper one day.....nobody at any age has an iron clad guarantee of any amount of time on this planet....my "new" girlfriend is 40 years old and had stage 3 breast cancer 3 years ago....she has a 5 year old and a 12 year old and her ex. husband was a total donkey's rear end and shi?head through the whole thing. She suffered through her whole treatment basically on her own doing all the housework while he sat on the couch and yes, she had chemo.....yet she is the happiest person I have ever met even after 17 surgeries and reconstruction....She shut me up about my whole situation....If you are 65 you got 23 more years at a "normal" life than I did and I don't have anything to complain about......

Your wife is right......

Post Edited (ChrisR) : 10/30/2015 7:48:30 PM (GMT-6)

Posted 10/31/2015 12:40 PM (GMT 0)
Dude, I'm 50, have been married 2 years, I'm terrified and telling me I don't have it as bad as you do flys in the face of all the helpful advice, compassion and encouragement I have received here. Yes I know I have it better than starving children in Africa too... But frankly this is not helpful mate... And I'm rarely unimpressed.

I'll assume you are having a bad day (as I was at that point) and hope that things look up. I realize that from where you are sitting having gone through all this, I may look pathetic, but I am where I am, on the ledge... In uncharted territory, lost, confused, bitter, frightened... depressed... You name it. Try and put yourself back there without the benefit of hindsight and consider How you made it through those dark early days, weeks and months?

What's the quote... "Be kind to everyone you meet, for they too are fighting a great battle".

Post Edited (Paul65) : 10/31/2015 7:20:25 AM (GMT-6)

Posted 10/31/2015 1:09 PM (GMT 0)
Hang in there Paul65. You are on a rollercoaster.

You'll even have people walk up and tell you you have the "good cancer". That has ended badly for those who tried it on me.
Posted 10/31/2015 1:38 PM (GMT 0)
Paul,
I went through those emotions just as you are experiencing now. It is tough. The thought of not being able to make love to my wife was very difficult to try to get my head around. My urologist was very tactless and pulled out an implant and told my wife and I that ED was treatable, she and I were horrified. So side effects were a big motivator to stay away from surgery. I chose Proton and have never regretted it. Good luck with whichever treatment you decide on if you decide to treat.
Cheers mate,
Kris

PS. still no ED smilewinkgrin
Posted 10/31/2015 2:27 PM (GMT 0)
Paul:

I guess we all have different prerequisites.

My goals/hopes were:


1) get rid of the PC

2) Don't be incontinent

3) No ED

Frankly, #3 was way down on the list.

I had the surgery and, unfortunately, #1 failed. #2 was a home run (fully continent) and #3 failed (there is some ED).

I guess you have to think about your own preferences.

Mel
Posted 10/31/2015 5:10 PM (GMT 0)
Peter's right, as usual. HT is the worst treatment in this regard. Add on some anti-depressant, and the "fait" is "accompli". I haven't had a big-O in almost 2 years now. I've weaned myself off the anti-depressant as of this month, so we'll see if anything improves.

As a 2-1/2 year veteran now of HT, there is nothing left resembling any sort of normal sex life. Just gone. Undetectable PSA is fantastic, especially in light of my fairly ugly diagnosis. That's the primary goal, for sure, but stilll...

And Peter, it has mostly squashed desire along with ability. But only mostly. I still occasionally long for one of those moments again, as my ever-increasingly porous memory seems to retain. I hate HT, hate, hate, hate.
Posted 10/31/2015 6:02 PM (GMT 0)
Paul, hang in there. Waiting is the worst part. My take on the treatment dilemma is that there is no perfect treatment, except for AS if you qualify. Every other treatment has risks of side effects, and the specific SE's one gets are unpredictable and uncertain. They happen.

Our challenge is to balance the uncertainties and then take the leap of faith. After that, we have to accept the outcome.
Posted 10/31/2015 6:24 PM (GMT 0)
Can't blame you one bit for a meltdown, although it does sound like you've had a Zeppelin-induced rebound. (BTW, I had a brief encounter with Robert Plant at the bar in the then-Continental lounge in Newark many years ago. Nice fellow...)

Re draconian side effects, you may not get them. (Well, you may not even have cancer, but I'd also have a degree of concern with your stats.) I was a G9 and had pretty aggressive treatment and I consider myself relatively SE-free at this point other than I shoot blanks when I ejaculate. (Or maybe it's more proper to say that I don't ejaculate.)

And I suppose that brings me to your statement about "normal" orgasms. I don't consider them abnormal, just different. They're no less fun and it takes some getting used to, but it's really more of a "new normal" than anything else.

Lastly, I myself don't agree with the "we treat younger guys more aggressively" approach of your doctor. I would argue that AS is maybe more important for younger guys since it maximizes the amount of SE-free years you have. Now, I did have aggressive treatment myself, but that's because I had an aggressive cancer. Let's hope you don't. And as I said, I've still come through the other side of the rabbit hole more or less unscathed.
Posted 10/31/2015 8:00 PM (GMT 0)

Paul65 said...
Having a bad one today, talking with my wife...

"You have to worry about the things you CAN control, not the things you can't"
"You have to make your choices and live with them, there's no point in regret"

This has come about because with my biopsy now pending I realize that I 'might' be down to the last few 'normal' orgasms I ever have on this planet - depending upon the result. I'm a planner, I don't do well open-loop.

While these statements might look good on one of those dumb-ass Facebook quotes with a freakin' butterfly or pony, they ain't helping me, I'm going... nuts.

My problem is that I have serious doubts that I can 'live' with draconian SE's... and that anxiety colors my view of treatment, in fact I even have 'none' wayyy up my list. "We tend to treat younger men aggressively says my Doc"... faaaaaaaaaark.

Yeah I know... I don't know yet, but with a PHI of 47.5 and PSA 1>8.5 in 12 months you don't have to be a rocket scientist to figure I likely have some nasty coming at me.

Ack... I'm having an Island Time moment... sorry guys, gotta shout/scream/cry at someone and my Vulcan wife isn't it.

Paul cry

Hi Paul -

I got my Biopsy results at the beginning of the month. It came back positive and with a gleason score of 7, so they want to take care of things pretty quick as they said it was moderately aggressive as well. I have my pre-op check on 11/9 and the surgery will likely be scheduled shortly afterwards.

The past month had hit all the levels. I had severe lower back pain so I went through the motions of an MRI to see if the cancer had spread or if it was just from an old injury. That part came back with good news. Now I'm on the stress countdown to the surgery. I got scared, mad, sad, and drunk over the past few weeks, now I just want to get the ball rolling and get that crap out of me.

As far as sex goes I can only relate to what I have read online and though it's been a mixed bag of results I am not looking at the dry fires as a bad thing. I guess I never really thought about my next few orgasms being the last "normal" ones for the rest of my life. I'm just thinking along the line of them being that last few messy ones!
Posted 10/31/2015 8:39 PM (GMT 0)
Yes.

2 years and 10 months after starting ADT and my T just came back at 40 ng/dL. No ability, no desire, but I do want to get back whatever I can. Sure does make you appreciate your choice in a wife though, as there is a lot more to that then just the sex.
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