Two Years Ago Today: Two years ago... - Advanced Prostate...

Advanced Prostate Cancer

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Two Years Ago Today

bglendi53 profile image
30 Replies

Two years ago today I was sitting alone in a hotel room waiting to have my Prostatectomy at 6:am the next day. COVID was rampant, my wife was not even allowed in the hospital with me. At the time I thought I was going to beat this thing with the surgery, only to find out 10 days later that the pathology report still showed cancer. It's been a real struggle ever since.

Doctors thought I had a 30% change of recovering erections within 1-3 years. Lupron squashed that hope forever.

Stay Tough!

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bglendi53
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30 Replies

I see many a man in this position after an RP.. I’m thinking RP s are a scam for the uro s to make big money? I was not a candidate for an RP . My uro was pissed . And he Told us so “ I can’t make any money off of you”! Tumors spread throughout my pelvis . Now I’m happy that I didn’t have an RP . Imrt Lupron and Tak -700 put my bad pc to rest over six years now . I’m thinking that you can do this now also . Sorry for the two years of being in the lurch . I’d wager 99% of us never see wood again after treatments. My pc specialist told me that “ imrt ontop of adt was my nail in the coffin for no more wood. At 18 moths i got the foley and tubes out of my back . then chopped the boys . Penis shrank down more than third! But who’s measuring it? No balls no Psa no signs of pc . Nightwood every night like a 16 yr old boy . However it doesn’t translate into love making with my sweet sexy wife . She looks at it like I’m a freak . It’s not at all sexual .It’s purely mechanical. The main thing it to kick the pc from your body . It’ll take poisons to do so …. Good luck 53!

Bvilkid profile image
Bvilkid in reply to

What year did you have your Orchiectomy (yes, I can talk like I know something 🤣)? What treatments were recommended after that, and what did you actually do? Not that you’re a rebel - but what are doing now? Greetings!

in reply to Bvilkid

9-1-2017 that day in infamy . I did imrt with Lupron until the orch and I’ve been on the defunct test drug Tak-700 7 yrs now . With 6.5 clear . No t ..😳

spencoid2 profile image
spencoid2 in reply to

I also have worthless "erections". Recently tried viagra and it looked hopeful but was not hard enough to do anything except make me long for my old dick. With no balls there is no libido so I don't really long for or miss sex but the closeness that comes from sharing such intimacy with another human is difficult to beat. We have decided to set aide some time for play with toys, at least one of us can be satisfied.

in reply to spencoid2

I am 1000% in agreement that not the sex act itself but that precious loss of intimacy is a huge loss in life! We are kinda of cut off from human touch and contact human . I feel untouchable with no libido . I’ve got wood at night but to no outcome .. I stay in prayers working on my spiritual self . The physical is gone . I’m still here .. Thankking God , I’m not worse .. Take care c9adre . Boy, i can relate to you .😳🎯

spencoid2 profile image
spencoid2 in reply to

I have noticed that I have become more of a touchy person in other respects. I guess it is my need for contact. We have one friend who is a real hugger, not the type that does it for effect. She really likes to hug people. I enjoy hugging her too but of course have no sexual interest for a variety of reasons. I should try to cuddle with my husband. He has severe sleep apnea and uses CPAP thing. We could try some cuddling before he falls asleep.

It is difficult to know how much effort to put into finding alternatives to sex until it is too late. I think for me I should work harder on this.

in reply to spencoid2

Cpap is hard to cuddle up to . I had tubes into my kidneys for 18 months . During that time i was in fact untouchable . That has persisted to this day . Se la ve . She just gave me a tight hug! Made my day! 💔😩

spencoid2 profile image
spencoid2 in reply to

🤗🤗🤗 one for now and two for later

in reply to spencoid2

Hahaha😂👏👏👏👏I’ll take anything I can get !

in reply to spencoid2

My wife and I went trough menapause together , she’s pulled out of it.. it was a hoot for a few yrs 😎✌️

bglendi53 profile image
bglendi53 in reply to

Lulu, I'm seriously thinking of telling the MO that what is the point of treating me with hormone therapy anymore, the apparatus is already destroyed. Why not just cut the nuts off and be done with it. The left one hurts every time I squat now anyway. But then there's always the adrenal gland waiting for marching orders on the testosterone. You don't keep a saddle on a horse you can't ride anymore right?

in reply to bglendi53

I was chemically castrated anyway . Mine were small and painful .It was like trimming deadly deadwood from the tree! I’m taking Tak -700 aimed at adrenal production . I don’t see how it’s going to come back on me after hiding for six years .? But we all know if one lives long enough it will return. Fuck that , f thinking about that every day of my life . Today was a good day .. Thank God ! 😔🙏

bglendi53 profile image
bglendi53 in reply to

What do they give you for a chemical castration? And how long does it take to finish the job?

in reply to bglendi53

Lupron for 18 months plus the other Tak -700 did the job of chemical castration l

Rockybullwinkle profile image
Rockybullwinkle

I feel you. Robotic prostatectomy for a Gleason 8 after PSMA scan showed no spread outside the prostate. First PSA two months after prostate removal was 0.5 that kept doubling each month. Second PSMA scan only 4 months after the first, showed metastasis to right lymph node. Did the first PSMA miss this or did the spread occur as a result of surgery? Then a year of Lupron injections and 37 sessions of radiation to the pelvis. While on Lupron my testosterone went from 420 to <6 and the PSA became undetectable. I am off Lupron for 15 months and my testosterone has returned to 370 with still no rise in PSA. Throughout this ordeal there was little emphasis on the devastation this treatment does to our manhood. Casual references by doctors to loss of length, girth, and ejaculate are buried in the fear that we have cancer and survival trumps every thing else. Well I'm surviving. With permanent ED and a reduction in size that makes trying to use that damn vacuum pump laughable. Oh, and the Cialis they prescribe way too late ( we actually should start using BEFORE treatment) does nothing. The smoke has cleared and I am left with pulling on a piece of taffy in pursuit of a dry orgasm.

in reply to Rockybullwinkle

I loved the rocky bull winkle show as a kid . I tried sex once after I got the foley out . My wife was horrified at my status . Hard little penis , no feeling , couldnt orgasm . So she felt it’s not her that is turning me on and she turned off ., I’m no rapist . I would like imtamcy but it ain’t on my plate no mo 😳lost in the wind! I like “ lost highway “ Hank senor

bglendi53 profile image
bglendi53 in reply to Rockybullwinkle

I too bought a pump, what a waste. Glad I didn't spend much. By the time I actually tried it my willie was so small it was more of a pain to try and get the cannon loaded than trying to blast a dry O. Haven't even tried in 8 months.

in reply to bglendi53

I liked sex when it was a mutual attraction . Part of that you have to at least like yourself to project that to another . My bod is shot . I am not dripping in prowess .. or self attraction . Masturbation? I’d much rather jump off a Cliff . No libido just means no interest .

London441 profile image
London441

For those on Lupron etc I understand the suppressed testosterone eliminating sex drive and thereby function for all intents and purposes. I had so little interest in sex on ADT it wouldn’t have mattered if I had function or not.

However, for those with ED having recovered T like you Rockybullwinkle is there a reason you don’t get an implant or at least use injections?

CAMPSOUPS profile image
CAMPSOUPS

Almost 2 1/2 years into this. Immediately started with Lupron and chemo. Added Zytiga about 8 or 10 months ago.

The first time I had wood I was concerned it meant that the Lupron wasn't working lol.

As time went on I would have the nocturnal wood, feel it pressing against my tight bike short underwear and it felt like the real deal. In my mind I said " better not stick your hand down there because you will probably freak out in shock and disappointment".

Eventually I did and yea its a weird little hard petite baby carrot or something.

One of these days I might cross the bridge and experiment with trying to enhance it, get more pleasure from it but first have to get over the weirdness.

Before this crap I used to go to sleep to all kinds of sex fantasies with wood not always getting to orgasim but just enjoyig the wood and going to sleep with it.

I have had to come up with new daydreams/fantasies.

Baby carrot! Hahaha , exacto! My brother ..nightwood is better than no wood ,even if nobody knows it except self . At least I had a 45 yr run at intimacy! I don’t have sex dreams at all . I’m up all night traveling to pee .. 5 yrs of same for me . Stay the course SOC I am told .. 😳🥕

CAMPSOUPS profile image
CAMPSOUPS in reply to

Couple months ago had a for real sex dream. Not a daydream fantasy.I think you have to be in deep REM sleep really koncked out.

Pee breaks here too. They don't contribute to a good night's sleep ha.

in reply to CAMPSOUPS

I do 20 mg melatonin and 4.5 mg naltrexone before bed.and Thc oil Vivid dreams , non sexual . Lately fighting Russians . 😩🙏

CAMPSOUPS profile image
CAMPSOUPS in reply to

Yuck. That's not a dream its a nightmare that's become a reality.

I've had frequent nightmares thru my life but rarely since diagnosis.

I think part of it is when this happened it forced me to face some financial issues head on and resolve them and that I fessed up to my wife just how f'up our financial situation was. l think that stress was getting to me over the years.

in reply to CAMPSOUPS

Financial hell and mayhem hit me too . I thought that I was good ,with some more years to earn ,buutttt nooooo, I got cut short . Put on the dole .not my proudest moment ..I stressed mucho for three years in adjustment to the new me! 🧐

bglendi53 profile image
bglendi53 in reply to

I'm up at least 3 times every night. I have diabetes as well and am on Jardiance. Jardiance wants you to drink lots of water to pass the glucose via urine. What a great idea.........................Not if you've went through what we all have.

in reply to bglendi53

3 Times is normal! Try 7 ?

Carlosbach profile image
Carlosbach in reply to

Scotty, do you keep a urinal by your bed. I have two because sometimes I pee so much at night that one just won't do the job. I keep them on a dish drainer tray in case there are any drips.

I've gotten so that I can roll over, pee, and be back to sleep before I know that I was ever awake. It has made a big difference in my rest.

j-o-h-n profile image
j-o-h-n

This joke is no longer funny now that I think a woody means a cowboy character in Toy Story...

A salesman is lost while driving in a small town in the Ozarks....He sees an old Geezer on a porch siting in a rocking chair, so he stops and asks the old Geezer for directions. He gets his instructions and then asks the old Geezer "what do they do for entertainment in the town"?

The old Geezer replies "we hunt and we f--k".

The salesman then asks "what do you hunt?"

And the old Geezer replies "something to f--k".

Good Luck, Good Health and Good Humor.

J-o-h-n Thursday 04/28/2022 11:24 PM DST

in reply to j-o-h-n

The thrill of the chase …

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