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

Advanced Prostate Cancer

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Orchiectomy - Are you happy with the results?

tceinvestments profile image
tceinvestments

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

80 Replies

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

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

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.

Thanks Magnus

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

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

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

Better in my book.

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

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"

That's why they call you missing big balls

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

Perfect....

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.

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.

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..

☹️

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

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.)

Thanks

spencoid2 profile image
spencoid2 in reply to LearnAll

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.

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.

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!

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

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!

Lulu700 profile image
Lulu700 in reply to greatjohn

No mo luppyron! 👍

Thanks

spencoid2 profile image
spencoid2 in reply to Lulu700

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 to greatjohn

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.

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 ! 💪👍

Thanks LuLu for your thoughts. Tough decision.Tc

The decision is the hardest part .👍

MateoBeach profile image
MateoBeach in reply to Lulu700

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

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.

Lulu700 profile image
Lulu700 in reply to MateoBeach

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.

Thanks Lulu how long did it take for you to recover

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.

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

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

6 weeks to dash any related minor pains.

monte1111 profile image
monte1111 in reply to Lulu700

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

j-o-h-n profile image
j-o-h-n in reply to monte1111

The shadow DO.....

Good Luck, Good Health and Good Humor.

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

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.

Thanks Noah

Possibly a longer life can result >>>

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

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. 😎

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

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. 😳

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!!

Lulu700 profile image
Lulu700 in reply to Blackpatch

To the ball less!😂

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

Good input Haniff - thank you.

Lulu700 profile image
Lulu700 in reply to Haniff

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 “!

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.

"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?

Really - scary

Lulu700 profile image
Lulu700 in reply to StePeteMN

Maybe not. But it can sometimes feel that way .

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

GREAT NEWS flatlander

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

Lulu700 profile image
Lulu700 in reply to ctflatlander

Ride on Bob! 🚴🚴🚴

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

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.

GREAT input Hobie - thanks

DarkEnergy profile image
DarkEnergy in reply to CSHobie

"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.

Lulu700 profile image
Lulu700 in reply to DarkEnergy

That’s a fact !

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.

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.

Lulu700 profile image
Lulu700 in reply to HerbieP

Exacto !😳

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

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.

Thanks so much for your input

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

And - THEY ARE BIG ONES!!!

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

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

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 ?

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.

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

I am scheduled in December.Christmas Present...

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