Better to have testicles removed at o... - Advanced Prostate...

Advanced Prostate Cancer

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Better to have testicles removed at outset

Farn profile image
Farn
42 Replies

Is it best to admit defeat from the get go and have less ADT or is that a misassumption?

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Farn profile image
Farn
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42 Replies
anothercyclist profile image
anothercyclist

I am at the one year mark since my bilateral orchiectomy. There has been no chemo at this point or any other medications. I feel great with no loss of strength or other side effects. Later this month I will get a bone and cat scan--will update at that point.

To me this makes the most sense of any treatment. At age 64 with an initial PSA of 248 and Gleason scores of 9-10 on all 16 cores, the orchiectomy produced a dramatic drop in PSA almost immediately. If chemo becomes necessary in the future it will remain an option.

Farn profile image
Farn in reply to anothercyclist

Have you got bone mets currently?

anothercyclist profile image
anothercyclist in reply to Farn

No. The spread was to local lymph nodes. At the last test my PSA was at 0.43 and dropping.

anothercyclist profile image
anothercyclist in reply to Farn

I had a CT and bone scan yesterday. The CT showed no new cancer in soft tissues, and both the prostate and metastasized lymph gland had considerably decreased in size. The bone scan showed no lesions and only inflammation normally associated with aging. This was the best result possible. I am so glad I went the orchiectomy route!

Farn profile image
Farn in reply to anothercyclist

That is fantastic news thank you so much for the updateI wish you continued good health

mrscruffy profile image
mrscruffy

Sounds reasonable. On a funny note, I mentioned that this was an option to a female friend of mine. Her response was "Do every female in the world a favor and have them removed, balls are ugly as hell"

Shooter1 profile image
Shooter1

Off ===that was my decision. 2 lupron shots, chemo, and at time of 3rd lupron shot went for orchiectomy and another elective surgery for concurrent recovery. Haven't regretted it for one minute. Some guys want to keep ADT vacation option open, but with a non-nerve sparing prostatectomy and invasion into nerves out of prostate area, I had permanent ED so loss when my jelly beans were removed..

If chopping the balls spells defeat for you ? Then don’t do it .For me,it affirmed my will to live … It did it 4 yrs ago allowing me to drop Lupron . No t has is own set of charms .. either way chemically or surgery . Of course, I felt shutting down the t factory itself was a benefit . I was already chemically castrated . To me it s like the guy with his arm trapped by a Boulder. Trimming the dead wood . Trying to survive! Good luck

Farn profile image
Farn in reply to

Thank you for sharing

Hey brother! I found that the biblical prophet Danial was in fact forced into slavery and they made him a eunich .. this didn’t deter his strong faith in God . He emerged from the lions den unscathed . They removed him and then other were fed to the lions .,and instantly devoured . His friends ( Shadrach ,Meshach, and Abednego withstood the kings oven solely due to their strong faith in their God ,not the kings false idols . No balls doesn’t delete faith or make us less a man in gods eyes. Great chatting with you friend . Hang in there 🙏🏋🏽‍♂️

Keep your faith and your beliefs strong . This is a muscle sucking macho sucking disease bent on eating us alive . When m pc specialist told me that m pc was feeding on T , I said off with the juevos , he told to wait a yr to be sure . I waited 18 months . I hated the lupron shots . For me it’s the best move . I’ve had friends tell me that they’d rather die than chop the boys . Not me .

Farn profile image
Farn in reply to

You’ve got to do what’s right for the hope of additional life and qol thank you for your comments

addicted2cycling profile image
addicted2cycling in reply to Farn

Farn wrote --- "You’ve got to do what’s right for the hope of additional life and qol thank you for your comments"

👍👍

MarkBC wrote --- "I had this discussion with my urologist. He advised against it and hasn't performed the operation for several years. His points:

1. The side effects we experience come from a lack of testosterone so there is no difference in side effects from chemical or physical castration.

2. ADT drugs are safe with many years of experience demonstrating that.

3. Orchiectomy is surgery with the potential complications that come from all surgeries - infections, etc.

4. While it is unlikely to happen in the next 10 years, it is possible that science may develop a new treatment that will allow patients to return to normal testosterone levels. An orchiectomy is permanent. ADT injections can be stopped if we ever get to that state.

He convinced me to stay on ADT."

Soon to be celebrating the 7th Anniversary of my Orchiectomy --- I disagree with the *points* listed above.

Frigataflyer profile image
Frigataflyer in reply to addicted2cycling

I am a rare case because I pay for all of my treatment out of pocket. Money was my reason for having bilateral orchiectomy, after two years of ADT . That was two years ago.

Frankly, I did not notice any difference!

By the time I was castrated, I had lost lots muscle mass. Now I concentrate on developing internal strength through Tai Chi and I feel strong even if I look like a “97 pound weakling” outfitted with the skin of a much larger man.

addicted2cycling profile image
addicted2cycling in reply to Frigataflyer

I've had conversations with many men who were hit extremely hard with physical and psychological issues while on ADT.

NewMan57 profile image
NewMan57

If you have advanced prostate cancer and no curative path and lifetime adt prescribed then I think orchiectomy is the better pathway rather than extended chemical castration. I dont think voluntarily having your testicles removed is about admitting defeat though. It's about taking control of what you can and making a really ballsy decision (forgive the pun). Maybe the most manly decision of ones life.Regards to all

John

Do you need testicles? I don't want more kids so no reason for them.I still have mine because it doesn't make sense today but, maybe in the future.

IMO - it's ok if a guy is attached to his balls but I'm not of that persuasion :)

A few months ago I was contemplating an orchiectomy and my urologist was against it. One of his reasons was that if I ever wanted testosterone again I wouldn't have any. I replied that I would just do TRT (testosterone replacement therapy). Next objection please...

My MO on the other hand agreed 100% with me. She's a woman and the urologist is a man. I wonder if that had anything to do with it - scratching head and raising eyebrow like The Rock.

Vangogh1961 profile image
Vangogh1961 in reply to

I spoke with MO about it, a younger female and she was hesitant, but recommended I speak to a urologist. He said no problem if I want it. Went to my PCP an older woman who said, certainly if you're on life-long ADT, it makes sense. Three people three varying opinions. I'm opting for it, but started a new job and want to wait a few months before taking more time off, but anticipate this fall saying goodbye to the T producing culprits.

anothercyclist profile image
anothercyclist in reply to Vangogh1961

It's a relatively simple surgery. I was only off work for 1 1/2 days.

in reply to

Putting on my cynic's hat I would suggest that urologists do a pretty profitable business dispensing ADT shots or pills.

in reply to

I would be thinking the same thing. But he's a very nice guy. After our last talk, I told my wife that I wanted to try to emulate his behavior.I started our meeting in a combative mood. He did not react. He simply continued to discuss things calmly and clearly and did not force his view on me. So I ended up becoming calm and actually listened to him. I ended up congratulating him on his professionalism. I was impressed.

In my case, my MO gives the shots and pills. My urologist is only for consultation and he would do business only if I did a surgery (like the orchiectomy).

ARIES29 profile image
ARIES29

I have a friend that had them chopped off as soon as he was diagnosed with PCA & to this day he is free of it. My own history was when I asked the urologist about it he showed me his new knife he uses to remove them so to this day I still have the boys tucked away & no urologist.

MarkBC profile image
MarkBC

I had this discussion with my urologist. He advised against it and hasn't performed the operation for several years. His points:

1. The side effects we experience come from a lack of testosterone so there is no difference in side effects from chemical or physical castration.

2. ADT drugs are safe with many years of experience demonstrating that.

3. Orchiectomy is surgery with the potential complications that come from all surgeries - infections, etc.

4. While it is unlikely to happen in the next 10 years, it is possible that science may develop a new treatment that will allow patients to return to normal testosterone levels. An orchiectomy is permanent. ADT injections can be stopped if we ever get to that state.

He convinced me to stay on ADT.

alperk profile image
alperk in reply to MarkBC

This is the most informative response I read. If there is no real difference why get surgery? Who knows what the future holds for us. I go in for a blood test before each quarterly injection and that trip is always worth it--to verify low T.

Grumpyswife profile image
Grumpyswife

Don’t forget that he makes more money on the injections.

MarkBC profile image
MarkBC in reply to Grumpyswife

I'm in Canada so the profit motive doesn't really apply. My injections are done at a nursing office.

ck722 profile image
ck722

Ouch. No. And that goes for my dog too.

Texan423 profile image
Texan423

I chose removal earlier on, PSA 3500 not a typo, 3500, bone Mets. Surgery and 5 targeted radiations to relieve pain and Abiraterone/prednisone for two years, Now PSA .1 as in too low to detect. Low to no side effects and feeling good. Two great years and I’m grateful

Farn profile image
Farn in reply to Texan423

That’s great news long may it continue

ck722 profile image
ck722 in reply to Texan423

It is wonderful that you have no side effects. No T was hell for me.

CAMPSOUPS profile image
CAMPSOUPS in reply to Texan423

I don't mean to put you on the spot but I wish you had a bio on your home page.You are a good responder to treatment from fully metastasized at dx and can give guys like me some more hope for extended time.

Great news on your response to treatment and may it continue.

dhccpa profile image
dhccpa

I've never seen a good reason to sharpen the blades yet. I'm 3 1/4 years in on Lupron only.

My PSA was 200 at high around diagnosis. My Gleason was 8-9. I had 3-10 bone Mets (at least 7 we're uncertain). 12 of 12 cores 50-80 per cent cancerous.

I've never discussed the issue with my MO, or with my urologist before him.

Carlosbach profile image
Carlosbach

Farn: My first couple of rounds of Lupron kicked my butt, and I had every intent of getting them chopped off. But, I tolerate the meds much better now, work out, walk and feel pretty damn good most days. Even with testosterone at non-detect levels my wife and I are having a blast in the bedroom. I'm glad now that I waited. When (hopefully never) I finally lose my libido to the disease, then the balls will be history.

Farn profile image
Farn in reply to Carlosbach

Thank you for your response

Miccoman profile image
Miccoman

Farn, I'm 72 and was on Lupron for 7 years. It was driving me crazy, literally. As I started out stage 4, Gleason 4+5, extensive bone mets, I still have my prostate. When I needed PBH treated last year (a "roto-rooter" job) I had them do the deed at the same time.

I am calmer now, T holding at 19, PSA rising slowly. But I am much happier without the Lupron and the "boys" were completely atrophied. My original, diagnosing, urologist had offered it at the beginning but as caregiver for two dying parents with a "grim" outlook, I decided against it. I wish I had had it done back at the beginning so I would not have had all the side effects of Lupron. For me, the worst was a huge emotional turmoil every three months and between the Lupron and the Xtandi I was having almost constant hot flashes (living in Florida at the time didn't help).

BTW, my father was treated with ADT for a few years starting in his late 80s and never recovered his strength or muscle tone after he stopped (he lived to be 98). It was devastating for him. So I don't know how accurate it is to say they will come back if you stop ADT.

Now if my MO and I can just get my PSA under control...

Farn profile image
Farn in reply to Miccoman

Thank you for your input great to hear your positive experience and longevity

London441 profile image
London441

As you can see there are many different points of view on Lupron vs orchiectomy. A personal decision if ever there was one!

However, it’s a fact that both serve the same purpose-testosterone annihilation. Although different in severity per man, the same side effects result from the removal of T, not the method. Any perceived difference between the two is almost always psychological.

I imagine there must be a relief factor for many who do get them removed. A way of moving on, no longer wistful.

In truth we are all losing testosterone as we age, with or without ADT. No need to ‘admit defeat’ though. Plenty of weight bearing and cardiovascular exercise matters far more than how much testosterone we are still holding at 60, 70 years and older. A mix of those 2 types of exercise is the key to having the quality of life we want so much.

I had total T of over 800 when I was younger, and over 700 at 64 when I was diagnosed. Total suppression was admittedly a little tough, but I feel just as good with 300 as with more.

To this end, supplemental T is always an option too, though controversial.

CAMPSOUPS profile image
CAMPSOUPS in reply to London441

You state with confidence that no T no matter the method has same SE's.I am pretty much in agreement from what has come into my "view " the last couple years since dx.

None the less I still wish I had more definitive information.

Is there any SE with Lupron/Eligard that does not occur with orichtomy ?

I still feel I haven't had the research presented to inform me completely.

London441 profile image
London441 in reply to CAMPSOUPS

I have confidence but no experience CS. My confidence is only logic of the sort that if, for instance, you burn your hand on a stove, the other hand will burn more or less equally.

Like you, I’m curious if any actual experience in the matter is otherwise.

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

"Do every female in the world a favor and have them removed, balls are ugly as hell"

If that's true then why did the women "I knew" like to juggle them?

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/05/2022 6:48 PM EST

London441 profile image
London441 in reply to j-o-h-n

Yes sir. The beauty of the balls is in the eye of the ballholder 😀

j-o-h-n profile image
j-o-h-n in reply to London441

Now that's funny...... thanks I needed a laugh.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/05/2022 7:20 PM EST

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