The question mark tells the story. I am in this for life so I am tossing around the idea of an orchiectomy. I am now on Lupron and aberaterone+prednisone. I understand I would not take the Lupron anymore but how about he Abi as it works differently as in adreanals.
Orchiectomy?: The question mark tells... - Advanced Prostate...
Orchiectomy?
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gsun
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Yes, you would still take the second generation hormonals.
Do you have any references TA concerning orchiectomy and the continuation of ARPI in circumstances of high volume metastatic PCa? Thank you.
Please be more explicit. There are many trials of ARPi+ADT.
Thanks for replying - I should be more explicit. Maybe an option for me at the beginning of my PCa journey would have been orchiectomy - but what about now? You implied in another note, that if someone has mPCa and is on ADT and an ARPI etc., there might be a situation where they would then decide to have an orchiectomy (I think this was what was implied 🙄).
In such a situation they would likely stop ADT - but apparently continue on with the ARPI. (Because of course there's a little testosterone that comes from other places like the adrenal glands.)
This dialogue today on the forum, plus some new reading today about orchiectomy, hit me like a ton of bricks!
All my reading to-date since my DX year and 3/4 ago, has been focused on drug therapies - and the positive benefits of exercise. I don't recall orchiectomy ever being suggested by doctors at the beginning or since, or even noticing the topic along the way. (I did finally today search the topic on this forum and was surprised to find quite a bit of discussion today.)
As I have shared on the forum before, I'm on triplet therapy and grateful about this and I'm doing great as well. I have high volume metastatic PCa with bone meds to the spine etc etc and thankfully no visceral involvement.Reading about orchiectomy today however suggested that maybe this was something I should consider!
Do I understand this correctly? Are you able to suggest any ideas or readings? Super thanks!
There really isn't much of a difference between orchiectomy and GnRH antagonists in terms of completeness of blocking manufacture of T by the testes.
If you scroll down to my reply on the following, there are some references:
healthunlocked.com/advanced....
But your situation is that you've added an ARSi. I doubt there is any difference at all once an ARSi is added. But it is more convenient to have an orchiectomy than to go in for shots or to take pills everyday.
I had the orchidectomy. It worked for 4 years. After that I went on casodex, zytiga and xtandi. Each gave years more quality life.
When I was restaged as Advanced and prescribed ADT for life (Zoladex) at the beginning of 2022 I opted for Orchiectomy. So far I havent regretted that choice at all. For me all of the normal ADT side effects apart from the hot flashes have been minimised compared to my earlier round of 12 months ADT in 2018. Still active, still running and weight training, psychologically good.Regards John
Thanks John. That's what I am looking for is some relief from the crappy SE's. Lupron is making me nuts.
Lupron literally made me nuts, thus my last couple of posts. Fortunately there are other options. My MO is switching me to Degarelix in May (in place of my next Lueprolide injection. Orgovyx is another option, and some of the guys have had success with Estradiol patches.
To Orchy or not to Orchy is definitely an individual choice, and it may be in my future still. Early on I considered the loping off the fruits, sexual function had failed, and I hated the physical SE's. But for me, delaying the Orchy was the right choice, because I regained some sexual function (first a pump, then viagra 3 or 4 times a week, and eventually adding in Trimix injections). Now, I don't require any of those, but the meds do enhance my wee willie.
Good luck with whichever course you choose.
I read your profile and you were dx in 2020. I was dx in 2018. I was ok with viagra/cialis until a few months ago. Now it’s only the pump. Trimix/BIM ox does not work well for me. I hope you have continued success.
Thanks. Not confident, but hopeful. Obviously, I can't say that it is getting harder to get an erection - but it is more challenging.
I think I will be okay when the baby carrot finally wilts for good. I won't like it, but I thought that part of my life was over after a few months on ADT. Doing my darnedest to maintain erectile tissue and hoping that some doc somewhere comes up with the equivalent of a Tommy John surgery for the penis. I'd like to bring the heat with that (formerly) bad boy harder than ever before
Your choice of orch should be no different sexually as the injection. Both eliminate testosterone. Your sexual function is because you still have nerves and the pills relax the smooth muscle.
I insisted on Orgovyx rather than Lupron. I have virtually no side effects. Mild hot flashes only. No weight gain.
gsun, I am also 69 yrs old. I am 2-1/2 years on ADT2. There is only a small chance the Boys would recover if a cure came tomorrow. So I also discussed with my Uro/Onc. He said it is quick and easy. He said he can replace with artificial (silicone?) testicles that will look normal. We even discussed penile implant if you want it to work. Just because our Libido is low, doesnt mean our wives are low. They may just be kind to us and not show there entire emotions. Personally, psychologically, Im sick of the shrinkage this life saving ADT2 has caused. Blue pills do not work, have not tried injections yet, but that seems awkward. I get there are many ways to please our women, but right now, doing the dishes, foot massages, and keeping the garden up seem to be what keeps us happiest. Mike
You really messed me over there Mike. My wife follows this forum, and when she sees your list (doing the dishes, foot massages, and keeping the garden up), I'm really gonna get screwed.
😃 As a wife, I had that exact thought! ( And identify with those 3 examples. )
If Mike posts next about also washing windows - I'm leaving the forum
bwahahaha🤐
too late for me, my wife has seen your post
me from now on, “Yes, dear I know Mike probably already has the dishes done and has already began a foot massage.
Yes sweetheart, I know I promised to do better. Ohh, you want me to pledge again to ‘be like Mike’”
Ahhh you make a me laugh a so hard😂
Do you dust after vacuuming, or before?
I am 81 and had a penile implant and it was sized for some problems my wife has. When I pump it up it is shorter than it use to be but it will never experience atrophy and it fits and works just fine. Have to use labs but with 80 year old wife it is normal. What great memories it brings.
Perfect!
You’re correct in thinking you still will stay on an adrenal T prohibitor.. I dropped lupron 2017 ,yet I continued on an adrenal t suppressant ( tak- 700) until 8 months ago . You still will have the symptoms of no T . But hopefully no C will be seen in you ? An orch is a big hit to the ego that many can’t fathom . To me it was like trimming deadwood from a tree . ✌️
Carlosbach• in reply to
maybe from a tall tree...
• in reply toCarlosbach
I thought myself ten foot tall before pc . Now I’m a mini me .
An orch right now after Lupron wouldn't even be noticeable to me!!!!😇
I also have fewer side effects after orchi than when on Lupron. Mainly the brain fog which was pretty awful. Hot flashes are somewhat less intense and less frequent. Getting more sleep. Also cardiac effects and diabetes are supposed to be less. Could always do testosterone supplements if ever appropriate.
With a PSA of 248 and Gleason scores of 9-10 (4/5 and 5/5) across the board at diagnosis I decided a bilateral orchiectomy was the best way to get the cancer under control. The surgery was just over 2 years ago. PSA dropped to a nadir of 0.43 early in 2022 and is now at 1.1. The surgery was a minor deal requiring 1 1/2 days off work. Side effects have been just a few minor hot flashes. There has been no follow up treatment at this point.
Eventually the cancer will begin to grow again and require treatment but at this point I could not be more pleased with my situation. I continue work full time, cycle regularly and generally feel great.
• in reply toanothercyclist
Bravo! 👏🏼👏🏼👏🏼👏🏼
I started Lupron and zytiga late 2017 and decided to have orchy done 2 years ago. I haven't or can't remember if side effects changed. My PSA was on the climb at the time of orchy(1.0). It has steadily declined over the last 2 years to .27, I'm still on Zytiga. My MO doesn't has a reason for it, but I'll take it. I'm 79 YO. Good luck on your decision.
Same boat brother. Been heavy on the mind this week. Good luck man. Age 45, RP in 2021. Lupron, Protocell (Entelev), Zeolite (every other month). Psa 0 ish. A few months on Xtandi put in the ED for wicked chest/back pain, cardiac symptoms. Cardiologist say heart is in great shape, even after mrna. I was really worried from to much tv news. Stopped Xtandi, and the knives were removed from rib cage. I have noticed mental issues on Lupron, made driving no fun.
Peace,
Crispy
45 is WAY too early. Crap. Good luck with your treatment and let me know if you decide on the orch.
Thank you sir, Li-Frau-Meni syndrome. Born to loose, Live to win!
Meditating on Orch daily now. This place really helps "ducks in a row" knowledge.
• in reply toMecrispy77
Dam Mecrispy ! 45 ? I’ll never bitch again about me at 53 . Stay strong young man . ✌️
gsun• in reply to
53 is WAY too early too!
Mecrispy77• in reply to
Some days I win, some days PC wins. The mental health part is my real kicker. The support that I allow in has been very much a god send. Older generations where molded to keep there mental health to them selves, my parents did, there parents did. I am actively breaking those chains and seeking what is needed. "HealthUnlocked" is a important part of this balance.
ps, Working w a wonderful Oncology therapist who understands LFS.
Age 74, 3 +years post Orchiectomy and back surgery, Abiraterone Acetate, Predisone. PSA from 3500 yes 3500, now .1 for for over three three years minimal side effects. Life is good.
• in reply toTexan423
Even the psa was bigger in Texas . That’s an astounding drop . Great job! 💪🏼🙏🏼
did you have Mets as at the time you did the orchiectomy? If you did, how extensive was it. I’ll appreciate a reply as I’m asking for my dad. Thank you.
Yes I was lighted up like a Xmas tree on the radiation screen. Only one spot was painful and that went away after targeted radiation. One spot was very close to the spinal cord so I had back surgery to repair a vertebrae fracture to prevent a spread to the spinal cord. So far so good on all accounts over 4 yrs.
After 7 years Lupron was driving me crazy so I had the boys cut off. Haven't regretted that for one minute. Mind fog cleared slowly and I felt more alive.
I do regret that the surgeon didn't think prosthetics were necessary and I do hate not having them -- unfortunately there are no good urologists in the region and the last one even denied that testicular prostheses exist even though one of his colleagues in his practice is the area rep for the company that makes them. Sigh.
Unfortunately Xtandi failed last year and I couldn't tolerate Docetaxel and I missed the initial round of Pluvicto so with none of those treatments I'm feeling well despite a botched radiation treatment on my cervical spine (its taken 3 months to mostly recover from that). PSA is going up and maybe Pluvicto will be available in June, but my confidence in my team is not the best so I may just decide to not go through that and welcome the end (says the single man).
Bottom line: I'd say go for it. Especially if you're on a bone med like Xgeva as bone strength is the only negative I've seen about having an orchiectomy.
Thank you for sharing sir. The darkness is real. Hugs and fist bumps bro!
• in reply toMecrispy77
Stay away from the dark side buddy . It was easy for me self loath for way too long . I wasted three years hating myself . Don’t do what I did . You must love your self in any form . If you can kick pc in the teeth for awhile you could just well see the cure discovered . You are so young . That pisses me off . It ain’t right . Hang in there ,. Take that vacation with your bro . Stop in an see me and I’ll give you a pep talk from in the know
Mecrispy77• in reply to
Thanks brother, hugs in the future.
• in reply toMiccoman
I asked about the fakies ? But My uro surgeon said “ who’s going to see it anyway”? My wife said that I look the same to her .I literally wasn’t a big balled guy prior . It’s Easier to jump over bob wire fences now . No more protecting the family jewels . 😳
Mecrispy77• in reply to
No more tea bagging the toilet days. Just me? Hahaha
I wanted the nut cut right off the bat, instead of Lupron etc. I had Stage 4, mets on ribs and shoulder blade. It has been 6 years now, so how can I complain. I can't help but wonder if the loss of "the boys" would have dropped my PSA, and saved me from a few years of constant hormone suppression. Maybe added a few years to my end of life.
That's exactly what it would do.
• in reply toJeremiad53
I asked for the orch right out of the gate . My pc specialist said “ wait a year to be sure “ I thought , sure of what . I waited two years . Shots for life I was told . F that noise !
Might be time to lose a mine. Has me thinking of new names like branchestrimmed or rootschopped
• in reply totreedown
It was proactive move for me . pc can be life or death . What’s in a name ?
treedown• in reply to
No lookin back is my motto. In anonymity, not much.
The acorns don't fall far from the tree
Especially if the tree is already down
Thats it acornsdown.
Just hope you don't have any problems with squirrels
Agreed, I don't need any nibbling at the nuts. The drugs are doing that good enough.
You went and ruined it TD. I always loved my nuts being nibbled
"Honey, what are you doing? Want to lay down with me for a little while?"
Kinky. Does she have teeth like a squirrel?
NSFW reply goes here
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