Orchiectomy - Are you happy with the... - Advanced Prostate...

Advanced Prostate Cancer

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Orchiectomy - Are you happy with the results?

81 Replies

I have seen some comments on this site about those of you who have had an Orchiectomy. No more Lupron.

I have been on Lupron for 2 1/2 years. Just completed my 4th infusion of Docetaxel, 2 more to go. Question - for those of you who have had an Orchiectomy, are you happy you did it? Any complications. Seems like a natural move for me.

Thanks for you input.

Tom

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81 Replies
Magnus1964 profile image
Magnus1964

I had regrets at first but looking back I think it was good move.

in reply toMagnus1964

Understand - but you do not need lupron any more correct???

Magnus1964 profile image
Magnus1964 in reply to

You are correct. You may need other ADT drugs, i.e. casodex, zytiga, xtandi, etc. But you will not need gonadotropin drugs such as Lupron.

in reply toMagnus1964

Thanks Magnus

Shooter1 profile image
Shooter1

Felt right to do it, Still does. 2 jelly beans in a bag did me no good, especially after none nerve sparing prostatectomy.

in reply toShooter1

And it works as well as the lupron????

in reply to

It’s said less cardio issues off Lupron. One less chemical to inject .

Shooter1 profile image
Shooter1 in reply to

Better in my book.

Magnus1964 profile image
Magnus1964 in reply to

Yes, probably better since you are removing the source of testosterone.

addicted2cycling profile image
addicted2cycling in reply toShooter1

Shooter1 wrote >>> " ...2 JELLY BEANS in a bag... "

Not here The Pathologist's report on my testicles following the orchiectomy not only stated that they were clear of cancer but also included this notation >>>

"I can confirm that 10 pounds of balls can INDEED fit in a 5 pound sack"

in reply toaddicted2cycling

That's why they call you missing big balls

monte1111 profile image
monte1111 in reply toaddicted2cycling

Maybe we should all go on the testicle diet. Lose 10 lbs. in one day!

in reply tomonte1111

Perfect....

addicted2cycling profile image
addicted2cycling in reply tomonte1111

Problem is there are some individuals who are not 100% sure and they only have a hemi-orchiectomy and wind up listing to one side or the other and walk in circles.

Zetabow profile image
Zetabow

It's very hard to say, my Oncologist said it might give me a better chance with my very aggressive cancer. I was having brutal hot flashes which it did help with that. I had minor issues where I didn't heal after surgery but the local Nurse took great care of me.

I don't have any regrets, whatever choice I make, I lose, it was just about how much faster or slower I die, I'll never know that answer so I cannot really have any regrets. I know the choice can be hard for some people mentally, I didn't give it a second thought and feel no less of a Man than I did before. If it meant a few extra months with my Boys then it was worth it, I like to believe my Oncologist knows his job and my condition well enough for me to have chosen that route.

LearnAll profile image
LearnAll

TCE, If you are thinking that Lupron side effects will be gone if you opt for orchiectomy..then, sorry..you will be disappointed. Because almost all of the side effects such as hotflashes, fatigue, muscle and bone loss and fat gain etc are due to lack of testosterone. Both lupron and Orchiectomy causes lack of testosterone...By choosing Orchiectomy.. you will be losing any possibility of regaining your natural T again in this life..because orchiectomy is permanent removal of testicles. What if next year a new treatment comes and cures your PCa...? You lost your balls forever and can not get them back..

☹️

in reply toLearnAll

Good point. I've been waiting 19 years for that cure. Just going to keep fighting the beast.

noahware profile image
noahware in reply to

Just to clarify a bit, both lupron and orchiectomy cause lack of testosterone AND an associated lack of estrogen. Lack of estrogen is actually more critical in the side effects. In either type of castration, surgical or chemical, there can be an add-back of estrogen via patches or gels.

Yes, the surgical route means you can never get back natural T, but T can also be added back artificially, if that is ever desired. (Some men who are on Lupron long enough can also have trouble getting T back to sufficient natural levels, as well, so adding T via shot, patch or gel might sometime be pursued if T recovery is desired by them.)

in reply tonoahware

Thanks

spencoid2 profile image
spencoid2 in reply toLearnAll

but you can easily supplement T with injections. i am just about ready to say goodby to my balls. i have no use for them and i need to get a shot every month and drive 9 hours to get it.

other than not going to get them back, are there really any disadvantages? i get my next firmagon shot in less than a week.

Concerned-wife profile image
Concerned-wife in reply tospencoid2

Have you asked why you get a monthly shot vs a similar type of shot such as Lupron every 3 or 6 months? Especially with your long drive seems something to consider.

greatjohn profile image
greatjohn

easy, breezy,....if my Sparky could go through it...I could. I borrowed his "cone" for the next few days after surgery(LOL) and nothing but a little discomfort for a few days. No complications and NO MORE Lupron!

in reply togreatjohn

Thanks for sharing. I think that's where I'm headed.

in reply to

Tc, I was already castrated chemically . My boys were shrunken tiny and a bit painful. That’s all gone now. Two tiny things less to worry about. They had expired and outlived there usefulness before surgery . Good luck Sir!

in reply togreatjohn

No mo luppyron! 👍

in reply to

Thanks

spencoid2 profile image
spencoid2 in reply to

but how are the pharm companies going to survive? i am also very close to offing the little testosterone generators. just need a few more reports of positive experiences with the cajones removal. i understand that virtually all the "side effects" pf ADT are due to the lack of testosterone but are there any other side effects of various drugs like firmagon? i am pretty sure i will still need degaralix to deal with the small amount of T produced outside of the cajones.

spencoid2 profile image
spencoid2 in reply togreatjohn

i am ready, have the cone. who is your vet? i bet my GP who was one of the very doctors who has stuck a finger up my but can do it.

in reply tospencoid2

TOO funny - no more fickle finger for me....

Well tc, I looked at it as an investment towards living longer. I was told shots for life. Was told T feed pc. I screamed off with the pups ! but my specialist had me wait 18 months to be sure he said . On that day I trimmed the dead balls off never to be thought of again . Some discomfort for a month or so. At 55 I suffered some poor me I’m worthless and not a man anymore thinking for a few months afterwards . That was 9-1-17 . No more Lupron. Yet , I’m still taking a adt test drug that stops adrenal production of t. For how long? Only the shadow knows. I Looked at this as a affirmation of choosing life over my previously large male ego... I had no hopes of a vacation from adt . My mo says stay the course! I did the orch almost 4 yrs ago and have not a regret about it. It’s the one thing self empowering that I did .. many men quiver at even the thought.. Do whatever you feel is best for you.Good luck in surviving with the beast that we carry within ! 💪👍

in reply to

Thanks LuLu for your thoughts. Tough decision.Tc

in reply to

The decision is the hardest part .👍

MateoBeach profile image
MateoBeach in reply to

Choosing orchiectomy as a self empowerment act. New perspective. 👍👍👍🙋‍♂️

addicted2cycling profile image
addicted2cycling in reply toMateoBeach

The ONLY PERSPECTIVE for myself 6 years ago last month having hit the jackpot with a PERFECT 10 was do I want/need DRUGS PUT INTO MY BODY since TAKING AWAY the offending producing items MAKES PERFECT SENSE.

in reply toMateoBeach

I doubt that I’d be tuff enough to cut off my arm with a pocket knife like the guy that got caught by a Boulder in Utah. That’s was a brave move. Letting some uro snip the problem under anesthesia was nothing. But an affirmation of life.

in reply to

Thanks Lulu how long did it take for you to recover

addicted2cycling profile image
addicted2cycling in reply to

Don't know about Lulu700's recovery time frame but for myself there was very little pain and was back on the bicycle in days riding the EASY SEAT. The E.S. was awkward but ridable. Missed my 2015 Ironman70.3Florida race due to the biopsy so had to get back riding ASAP.

in reply toaddicted2cycling

Not much real pain . Just some associated discomfort for a time.

in reply toaddicted2cycling

Oh My - you are an Iron Man.Thanks for sharing..

in reply to

6 weeks to dash any related minor pains.

monte1111 profile image
monte1111 in reply to

"what evil lurks in the heart of j-o-h-n."

j-o-h-n profile image
j-o-h-n in reply tomonte1111

The shadow DO.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/17/2021 10:00 PM DST

noahware profile image
noahware

I believe there is at least one study that showed men getting orchiectomy ultimately have a reduction in stress levels (as self-reported) compared to those doing Lupron. This surprised me, but if you think about it, the need to get that stupid shot every three months causes stress for many men, as some comments here indicate. I think I would be one of them!

For me, though, it's all about future hopes, plans and desires to go off of being castrate and do a "vaca" from treatment. (Of course, such hopes may not be realistic for many of us.) It makes sense to me to try to delay becoming castrate resistant, if possible. I have decided for now on a third option, which is to do high-dose transdermal estrogen as a form of ADT, and pursue intermittent ADT as long as my PC allows that to be practical.

in reply tonoahware

Thanks Noah

addicted2cycling profile image
addicted2cycling in reply to

Possibly a longer life can result >>>

reuters.com/article/us-scie...

StePeteMN profile image
StePeteMN

I'm 54 and have asked two of my PC docs if I should consider an orch. They both emphatically answered with a 'no'. In 2018, I started this journey with a three-figure psa and Gleasons 9. So I interpret their answers to be hopeful for me. 😎

in reply toStePeteMN

That is such good news. How is your PSA todayThanks for sharing

StePeteMN profile image
StePeteMN in reply to

PSA? It still exists and was stable at about 0.10 for nearly a year, then an increase ocurred, assumed to associate with the bone spot that got zapped last week with a little SBRT. 😳

Blackpatch profile image
Blackpatch

There can’t be many places in earth where you could reach out for advice on this topic and get such genuinely authoritative and well meant response - take a bow guys!!

in reply toBlackpatch

To the ball less!😂

Haniff profile image
Haniff

My oncologist asked me to do the orch but my urologist was against it. He says if I can tolerate the 3 monthly jabs then let things be.

Informed my oncologist and he said OK

So I guessed it’s up to the individual really 😊

My very best to you ❤️

Haniff

in reply toHaniff

Good input Haniff - thank you.

in reply toHaniff

My uro bragged to his md cohorts pre orch saying “ This guy doesn’t want to see me every 3 months for shots for lifes.” The cohorts all nodded in unison as if to say “ “I’d do the same “!

Grumpyswife profile image
Grumpyswife

Any care decision you make can come back to haunt you. Example, if you try and fail too many medications (i.e, Xtandi, abiraterone, darolutamide) that can exclude you from certain clinical trials. Some trials require chemical or surgical castration but one never knows.

My husband had an orchiectomy 3 years ago. It's great not to have to plan our lives around the injections. The doctors may lose interest in your case since they are not making money off the injections.

However, hubby's hot flashes are worse then ever causing sleeplessness. He is also taking darolutamide which could be making it worse.

Overall orchiectomy good decision.

StePeteMN profile image
StePeteMN in reply toGrumpyswife

"doctors may lose interest in your case since they are not making money off the injections." You're saying your doctor gets a commission on each Lupron injection? And his/her attention is contingent on that commission?

in reply toStePeteMN

Really - scary

in reply toStePeteMN

Maybe not. But it can sometimes feel that way .

Pops78 profile image
Pops78 in reply toStePeteMN

Probably not a commission, but many benefits like vacations, golf memberships and equipment, and so much more. Big Pharma spends to gain big.

ctflatlander profile image
ctflatlander

Hi Tom, I'm 77 1/2 and just had it done 3 weeks ago. A couple sore days but no big deal. I couldn't get an opinion from the doc but w/ this group's input, glad I had it done. Been on lupron 3 1/2 years. I have great energy and did my first 15 mile bike ride after the surgery last week. I don't care at this point of recovering T, but glad no more chemicals in my body. Bob

in reply toctflatlander

GREAT NEWS flatlander

in reply toctflatlander

GREAT news. I can't wait to finish chemo to have it done.

in reply toctflatlander

Ride on Bob! 🚴🚴🚴

pjd55d profile image
pjd55d

Thanks to all for the info/input - including the smartass humor . I am considering it. Lots of info for me here. Best to all

CSHobie profile image
CSHobie

I was dx at 51 , about 14 months ago, staring down life long ADT. I took the monthly Eligard shots for about 5 months, when I had the Orchie. Years of ADT kills your testes in any case, so I went for the slightly less side effect option.

Unfortunately there is no land slide win either way. Personally I found my penis is not nearly as dead as it was on Eligard, and my brain fog and depression has eased. I am happy with my decision.

in reply toCSHobie

GREAT input Hobie - thanks

DarkEnergy profile image
DarkEnergy in reply toCSHobie

"Years of ADT kills your testes in any case"

Yes, yet another info docs don't explain at all, we hear many that say, the possibility of regaining T to recover the jewels is nice option to have. But the prolonged low T will decay the jewels, atrophy and other physical damage will be permanent.

in reply toDarkEnergy

That’s a fact !

FinalBossMatt profile image
FinalBossMatt

I've actually started Lupron a few years after getting my balls taken care of so it might not be an end to it.

What might happen though is your body just reacts better to things.

HerbieP profile image
HerbieP

I literally lost my balls the day I became an executive (my choice to remove them, wasn't aware I was becoming an executive that day). I'm happy they're gone as it's two less things to worry about.

in reply toHerbieP

Exacto !😳

Survivor1965 profile image
Survivor1965

Mine go with me in the ground. Just sayin...

spencoid2 profile image
spencoid2

So it seems that more than just a few people have chosen castration and are happy with that choice.

Someone asked why i was getting firmagon once a month instead of lupron once every three. I really can't remember but that was decided after giving "full" thought? to the options. I'll ask again on Thurs and also about the castration.

in reply tospencoid2

Thanks so much for your input

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

Being a Chippendale dancer I need my balls. Ladies like to feel them when they stuff money down my briefs....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/17/2021 10:07 PM DST

in reply toj-o-h-n

And - THEY ARE BIG ONES!!!

j-o-h-n profile image
j-o-h-n in reply to

And Shiney too (and two too).............

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/18/2021 6:43 PM DST

in reply toj-o-h-n

Thanks John - love your HUMOR....Keep ducking and swinging

Caseykane1 profile image
Caseykane1

No one who had the orchiectomy mentioned so I'm a gonna ask did any of you get prosthetics or no and if no why not ?

addicted2cycling profile image
addicted2cycling in reply toCaseykane1

IIRC, CERICWIN did indeed opt for having a pair of dumb balls put in and I believe he went with a medium size rather than large or super size.

howardroark profile image
howardroark

No regrets! Has been over 4 years. Do not miss the painful Firmagon injections.

in reply tohowardroark

I am scheduled in December.Christmas Present...

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