Boys, sometimes this gets me down

Posted by ej4902 @ej4902, Feb 24 4:38pm

So many of you guys are really smart and understand this cancer well. It’s a pleasure to see all the help this support group can provide.
I’m in the mental game now and it’s ok but it’s not what I would call good. Most days are ok but sometimes it really sucks to know I’m 57 and never going to have sex again. Gleason 9, Rp, radiation and now on the shot/pills treatment for god knows how long. I have been gutted like a pumpkin and no nerves to spare. The thought of a shot to get hard is absolutely mortifying and out of the picture, for now, anyway.
Got a fantastic wife who has been by my side without question. I know how lucky I am to have her and I feel terrible she has to go through this with me.
Yes I am glad to be alive. Nature killed me in 2024 and to still be here is an amazing gift I do not take for granted.
Anyway, just wanted to vent to guys who get it. Actually I hope you don’t get it but you know what I mean.
Guess I am hoping to hear how some of you are getting through the mental game. Pity party over 🙂

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rooroo | @rooroo | Mar 1 8:55pm

In reply to @jeffy1 "@rooroo were you getting PSAs every 6 months before you got metastasis?" + (show)

@jeffy1
Yes. First noticed above undetectable and urologist suggested not to worry. Then went to monthly and psa continued to rise, not abruptly, but rise it did. Since i had a radical prostatectomy my psa should have remained undetectable. He asked if I wished hormonal therapy and didn’t really explain what that entailed so I ditched the urologist and saw an oncologist who ordered the pet scan. Sure enough it had reappeared in bone and some organs. He explained what the options were and let me know that adt was the standard and it gave much hope for remission. Never will be cured but can live with the side effects and hope I don’t get resistant to the treatment. So far 16 months. I see my oncologist monthly for blood draw to make sure no damage from the treatment. Daily dose Zytiga 1000mg -prednisone 5 mg and quarterly shot ( not recalling the name). So far so good. But every morning when I swallow those 4 huge tablets I’m reminded that I’m living on borrowed time. Trying my best to ignore that, but sometimes it gets the best of me. Good luck to you

bear60263 | @bear60263 | Mar 1 9:05pm

In reply to @peterj116 "Venting is why we're here. And not all of us are smart... we've just been through..." + (show)

@peterj116 I have tried the injections and they are not fun. Kinda puts you out of the mood

jeffy1 | @jeffy1 | Mar 2 12:06am

In reply to @rooroo "@jeffy1 Yes. First noticed above undetectable and urologist suggested not to worry. Then went to monthly..." + (show)

Good luck to you.

brianjarvis | @brianjarvis | Mar 3 7:00am

There’s a 2023 presentation out of Stanford University that might provide some ideas to get you through this —> it’s titled “Penile Rehab: Optimizing Recovery of Erectile Function after Prostate Cancer Treatment”

They first talk about how things are supposed to work “down there,” what goes wrong as a result of treatments, and then a variety of remedies.

(At 65y during April-May 2021, I had proton radiation treatments + ADT and haven’t gone through all that you’ve gone through. But, I found this presentation to be informative.)

scottbeammeup | @scottbeammeup | Mar 3 7:27am

As a gay man in some ways I've been "lucky," if anything about this disease is "lucky," in that my definition of "sex" was always more than intercourse.

I found a community of guys who call themselves "sides." These are guys, most of whom never had prostate or any other cancer, who just don't like gay intercourse so they do other stuff so I've been seeing someone for awhile now who was previously just a friend but has always been a "side."

I'm fortunate because, with Viagra, I get decent erections (7 on the "hardness scale" according to my sexual health doctor).

The tougher thing for me has been no semen since that's the "sign" I enjoyed myself but my partner knows this and doesn't care. If things don't work out and I have to go back on the dating market it could be tougher but I'll cross that bridge if and when it happens. I've gotten a lot better about not "catastrophizing" about what might happen in the future.

For straight guys, I assume there are probably women out there who would be fine without intercourse but don't know for sure.

guybe | @guybe | Mar 3 9:00am

In reply to @stage4lovolmetpc "I get it...Ive got it....you can read my post: "Getting ready to take my first dose"....I..." + (show)

@stage4lovolmetpc

I get it...Ive got it....you can read my post: "Getting ready to take my first dose"....I was in denial for a few months, reading all the crackpot cures on the internet, listening to my neighbor....even tried one of them but finally came to my senses and took the first step...ADT...what an awful thing to do to yourself...self castration! And the side effects......I cant even think about them....but I did realize that the big black spider growing inside me had to be slowed down, starved and made smaller....and taking those pills would give me time to make a plan for what comes next...radiation...oh man, Ive been reading all the stories, comments and experiences and none of them are good.
My Drs are not telling me jack, I can hardly understand them. You can bet Im going to know about margins, beams, protons, and anything else before I get that...but Ill have to learn it on my own...and if the ADT does its job maybe I wont do radiation, Im 72 and have had a good, full and active life...but I am on the downward slide...lol...So...when the depression and dark thoughts come for me in the night Ill ask for some pills to keep it back...whats a few more pills at this point? And when the pain get too bad, Ill ask for more pills. And at the end they will give me morphine....both my Mom and Dad had comfort care (thats what they call it) and passed away peacefully. So this is not to discourage you... there is always another door to open, a way to get thru another day, another sunrise to watch and another sunset to enjoy...I just came back from a night walk on my frozen pond....it was beautiful...now Im back, the woodstove is going, the dogs are sleeping....things are pretty good right now. I am grateful for today. When you think about it, that is all we have. Today. Im living like my dogs...one day at a time...it liberating, in a strange way......."Bark at the Moon"...good old Ozzie!

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@stage4lovolmetpc I had radiation 4 years ago, recently saw my PSA jump, and now I'm about to go in for another round. Keep in mind that many comments just naturally lean to the negative. Myself, I experienced no adverse effects from my previous radiation, except for a little weakness in the rectum (that is, when I have to go, it's not just a matter of running another mile to a porta-potty!) So my experience was that radiation is no big deal, and the sessions were practically meditative. This time around, I'm looking at 2 years of combined ADT (Orgovyx, Lutron) plus radiation, and we'll see where that goes. ADT has started, and so far I just get some annoying hot flashes and a sexual vacancy where desire and ability used to be. Like you, I am trying to stay positive, and explore myself - who I am with the desire gone, looking at that as a distraction that's been removed. (Why not, under the circumstances?) But radiation? Relatively easy, not to worry, IMO. It looks like you have a robust attitude, and that's the main requirement for this journey.

asgmiami1 | @asgmiami1 | Mar 3 10:37am

My wife and I discussed the impotence factor, and she says she’s fine with it, we both think we are.
We like sex, of coarse, but agree, it’s not the most important thing we share. We both want the little things, dinner in bed, watching our shows, the little games we play… the special moments that are ours.

jimgaudette | @jimgaudette | Mar 3 11:15am

If you can have an orgasm through masterbation without getting an erection and your problem is not being able to get an erection, you might want to talk to your doctor about an Inflatable Penile Prothesis IPP implant. If you cannot have an orgasm, just getting an erection is kind of pointless, unless you are doing it for your wife.

ededed | @ededed | Mar 3 11:16am

In reply to @scottbeammeup "As a gay man in some ways I've been "lucky," if anything about this disease is..." + (show)

@scottbeammeup Report from the ADT wilderness. There are women who are fine with an intimate relationship without intercourse. It does take communication and exploration of options. It's kinda like the old saying "When life serves you lemons, make lemonade"

billybwbf2 | @billybwbf2 | Mar 3 6:50pm

I’ve been there with having a pity party! What guy wouldn’t after going through what we have had to endure! BUT, do the best you can with what you’ve got! I take a shot to get hard and I’m thankful it works and that my wife and I can enjoy our time together! By the way. I’m 80 years old and still don’t want to give up sex!