Has anyone had an orchiectomy and if so how were your side effects and how is your life after the Big O.I'm scheduled to start Full Pelvic Radiation in 6 weeks but fear the long term side effects. I asked if anyone here had FPR and if so what were their side effects and life like since then. Thanks for all your answers and I learnt much, all bad as far as I'm concerned and do not wish to experience the after effects of FPR. SO, I have decided to get a full orchiectomy instead of radiation. After all what do I have to lose besides everything ..... but the good part about getting the big O is I don't have to deal with all the side effects of the drugs used for prostate cancer and those drugs causing problems with my organs. The way I see it is, I will more then likely have to be on Hormone therapy the rest of my life which really is not good for my organs and do not wish to deal with those issues. Yes, I know the big O is not reversible and may end up being on drugs after sometime having the big O but willing to deal with it. I treated myself with nutrients and diet for almost 5 years and never dealt with side effects and still held the cancer hostage in the protate, also had psa test and prostate mri's and bone scans keeping tract of the cancer growth. Then got a kidney stone which had to be removed surgically which caused psa to sky rocket to 101, could not recoved the psa . Before surgery psa was 19. yeh, I took a chance but also had severe prostatitis causing psa issues. I then had to go on casodex, had been on casodex for 2.5 years until my psa started going up. was on Orgovyx for 3 months and psa went up instead of down. I have been fighting this crap since 2016 and it is still contained in the prostate according to my last Pet Scan but that does not mean there are not microscopic cancer cells outside the prostate. After long hard thought, I think an orchiectomy is my best choice. I'm 78, already had my family so why deal with all the drugs and side effects they cause. Now it's time to see how others who got an orchiectomy are doing and how tbier life has been since the big O and if they rehret getting an orchiectomy.
Thunking of getting an orchiectomy in... - Advanced Prostate...
Thunking of getting an orchiectomy insted od radiation
Howdy. "the big O"? You're building into something in your mind. Either chemically or surgically, it's castration either way.
True, there's no going back from an orchiectomy, but in theory, if ever is cure for our horrible disease happens, You can take testosterone to regain normalcy.
Physical castration is the original treatment for prostate cancer and it's still done around the world where the cost and availability of drugs is prohibitive.
I had it done earlier this year. Not one regret. Rarely a hot flash, no Lupron induced fits of anger. I wish I had done it years earlier. Just don't forget to have them install prosthetic testicles, assuming you still visit a locker room now and again. (Medicare covers it)
Best of luck
I've talked to several patients who've had no bad side effects from WPRT. But it is unadvisable to base your decision on a few anecdotes rather than the experience of hundreds of patients.
Orchiectomy does NOT replace radiation. It replaces ADT.
Having not experienced painful metastases, you have no idea what you are signing up for. Having sat with patients confined to wheelchairs and in pain, not one of them wouldn't trade the mild but annoying side effects of curative therapy for the lifetime of pain and misery.
TA -
Shaunjon's reply to woppaginny's orchiectomy post asserts that his WPRT has been responsible for some very serious harms. Have studies shown serious concerns about these types of consequences associated with WPRT? In a separate post by Shaunjon, other HU participants cited similar serious damage from WPRT?
Anecdotes carry a lot of weight with patients,but shouldn't. Every man who participates in a clinical trial is an anecdote - but because you haven't heard his story personally, it carries no weight with you. This is a cognitive error that all human's make. they even give it a name - "the availability heuristic."
This kind of error is especially dangerous in forums like this and in support groups. In my support groups, I am there to put it in perspective, but I don't have the time to sort through all the posts on this forum. But remember that people who post here often are outliers who have had some problem or other.
I have now read Shaunjon's post - it is tragic! But do you honestly believe they would keep offering WPRT if his experience were typical? Looking at his profile, I see he also has lymphoma, which certainly contributed to his side effects.
Here are some statistics from a recent (POP-RT) randomized clinical trial where patients received WPRT or Prostate-Only Radiation Therapy (PORT):
Murthy et al. reported on toxicity and patient-reported quality of life outcomes comparing the two treatments.
• Acute grade 2 or greater GI toxicity was 33% for WPRT vs 25% for PORT (not statistically different)
• Acute grade 2 or greater GU toxicity was 33% for WPRT vs 24% for PORT (not statistically different)
• Late-term grade 2 or greater GI toxicity was 8.2% for WPRT vs 4.5% for PORT (not statistically different)
• Late-term grade 2 or greater GU toxicity was 20.0% for WPRT vs 8.9% for PORT (statistically different)
• Very few patients in either arm suffered serious (grade 3) toxicity. There was no grade 4 toxicity.
• While higher rectal radiation doses were not associated with higher bowel toxicity, higher bladder doses were associated with higher urinary toxicity.
• Patient-reported outcomes were not significantly different for urinary, bowel or sexual adverse effects.
thegreenjournal.com/article...
Thanks TA ! I believe I have read those studies before in your great blog! I guess the type of problems reported by Shaunjon and others have been so few that such SEs are not deemed worth mentioning , or , as you say, such outcomes have never been directly linked to WPRT...ie there are almost always other medical conditions that may have been the true cause.
Yes, definitely a risk on forums such as this....anecdotal stories influencing major decisions!!!!!!!!!!!!!!!!!!
BTW, and coincidentally, I just happened to look at this.......
nslhd.intersearch.com.au/ns...
" The 2 year estimates of late Grade 2+ GI toxicity were 1.8% (CBCT) vs. 2.7% (FM) and late Grade2+ GU toxicity 12% (CBCT) vs. 9% (FM). Conclusion: Daily soft tissue matching using CBCT achieved equivalent rates of Grade 2+ late GI (1.8%) and GU toxicity (12%) compared to fiducial markers despite the CBCT patients having older age and medical co-morbidity including a 30% rate of warfarinisation. "
I don't immediately recall the study period for Murphy's POP-RT report, but those results are very similar to what the FM vs non-FM study above found for prostate only, with it appears a very slight ( significant?) advantage for FM. Of course, as margins become tighter, FM advantage would seem to grow as far as side effects, and PCa control?
I had a horrible biopsy experience(restriction and catheter) so naturally reluctant re markers!! One report specifically mentioned biopsy experience as the big factor in patients' avoiding FM use!
It did not register with me that femur is considered an OAR with prostate RT!!!
BTW, should we care much about Grade 2 events, or just 3 and above? Eg, is catheter need a 2 or 3?
Have a great weekend in sunny SoCal....those days are now few up here!!
My sister's chronic GI problem, diarrhea and adult diapers, are pretty much limiting her life , and happiness!! Diagnosed as some type of bug that has not responded to primary drug for her situation... a friend's Uncle will not travel because of RP-induced lifetime incontinence!
Hi -
Just read your bio.........you mention all annual scans have been clean, with exception of one enlarged node that you Doc seems to think is not metastatic. Is that correct? So, have you had a PSMA PET scan recently? Not perfect, but I would think covered by insurance with your PSA level.. you mention whole pelvic RT, but why not prostate RT at least? Discuss with your RO the range of possible SEs, and ALSO what he/she believes are the probabilities for experiencing each type of SE! Of course, proper Googling and use of pubmed.com wil let your review the many studiies/reports on all different variations of RT......prostate only, prostate + whole pelvic, or whole pelvic only. when you mention whole pelvic, has that been advised by your Doc, and understood to also include full prostate RT. Perhaps also 12-24 months ADT ? I would not assume that your non-med "treatments" are responsible for your good outcome so far...more likely just good luck.
BTW, your biopsy Geason score? Few men would foresake the chance for "short-term" castration and instead elect lifetime castration......low T is the main culprit, not the drug, as far as SEs go. Again, confirm what others tell you with your own use of Google, pubmed, or consult with your Doc...or all 3 !!
If you had some other serious medical issue that gave you a short life expectance anyway, then maybe doing nothing and watchful waiting would be the way to go? with all your scans, looks like that is what you are doing now.....with Doc's agreement?
Yes low T is responsible for many of the side effects of castration chemical or surgical But the incidence of heart disease diabetes and a few others are lower with Orchiectomy than ADT. So I chose Orchiectomy.
Thanks for your input .... the Doc does not really know if the swollen node was from cancer or prostititis. I do not see any sense in getting the prostate removed. From what I have read and researched the possibility of cancer coming back after removal is 50%. Had a Pet Scan 2 months ago, came back no signs of cancer other then prostate. Radiation can kill the cancer but later on you have all kinds of problems from WPRT. From some of the post in here some have also said the had cancer returned after removal. I'm still debating about WPRT but will probably not have it done and just get the orchiectomy. To tell you the truth, don't want either of them but what choice do I have. Going to end up on cancer drugs for the rest of my life no matter which way I choose. Half tempted to try the fenbendazole treatment. Read some really good reviews on it and also from other research into it. Also read some poor outcomes but none had side effects. Going to have to do some more research on ochiectomies and fenbendazole before I actually decide.
Are you the same guy as woppaginny? I'll assume so.
1st, ifa BIG factor in your decision, maybe ask about a biopsy of that node...however, you are saying PSMA PET showed nothing for that node, correct? You have not provided your biopsy results? Whatever they are, I suggest you go to Memorial Sloan's PCa website, and use this nomogram.....
mskcc.org/nomograms/prostat...
Then, you can compare those results to another they provide......
webcore.mskcc.org/survey/su...
The 1st nomogram is based on actual long-term reuslts on patients treated by MSK using RP, and most studies show that modern RT provides similar results. There are other nomograms that you could look at....let me know if interested?
The 2nd link is a nomogram for life expectancy for men with PCa diagnosis who chose not to have any type of initial treatment!!! That is an option for you at your age !
Now, ADT as a monotherapy has ZERO probability of being curative, and most studies have shown something in the area of 2 years of additional life expectancy. Again, your biopsy results are very important when making your decision, but of course you know that already.
Let us/me know what those nomograms show for men with your initial diagnosis.
BTW, you mention 50% recurrence, but that all depends on your initial diagnostics.....and none of this is a prediction for you of course.....nor are the side effect probabilities!
THe most SE complaints from men who post here are ADT/no testosterone related.....NOT surgery or RT related!!! and orchiectomy is no magic solution to the ADT SEs...do not kid yourself!! In that regard, consider Firmagon or Orgovyx instead of Lupron or Eligard.
There are no guarantees, no matter what your decision...sigh!!!!
Yes, same guy, forgot my first post name so started another then found the first one.
First of all thanks for your input.
Secondly I'm pretty versed on Hormone Therapy treatment DRUGS and what they do to lower testasterone. Also what they do or can do to internal. organs. I also know that an orchiectomy is not revesible and it can cause the same or most of the side effects that the drugs cause. Like I said before, I am thinking of getting the orchiectomy so I don't have to take the drugs. The orchiectomy will probably lower testasterone to near zero. Something the drugs I have been on has not accomplished. I also realize that sooner or later even though I had the orchiectomy I may end up taking drugs again eventually if the cancer become castrate resistent. The one thing about getting an orchiectomy is I do not have to take all the drugs when one stops working and start another until that one stops working. It is a never ending circle of drugs. Not real good for the human body. I'm 78, had my family already so not worried about starting a family. Besides, you can still have intercourse after an orchiectomy in time. Know 2 who had it done due to testicle cancer and have more sex then they did when they had their nuggets. I'm also thinking of getting the orchiectomy so I do not have to have radiation at this time.
An orchiectomy will delay the radiation and will use radiation as a last resort. Know about all the possible long term side effects of radiation years down the road after the radiation. Trying to avoid that as long as possible. I'll probably be on cancer drugs the rest of my life eventually futher down the road. Just looking at the possible future from radiation..
Heres my run down to date.
diagnosised with prostate cancer January 2016,
started vitamins and nutrients among other things to fight the cancer. Had psa checks, bone scans and prostate mri's twice an year to keep tabs and progression of the cancer. Had biopsy January 2016, results then were 3+4=7.
April 2021, had kidney stone surgery which somehow caused PSA to skyrocket to 101. before kidney stone surgery PSA leveled at 14. All scans and test still showed cancer contained in prostate.
After kidney surgery could. Not recover PSA and Doc put me on Casodex. Casodex lowered PSA TO 13. was on casodex 2.2 years when PSA started to rise again. Doc stopped Casodex and put me on Orgovyx.
Orgovyx brought PSA down to 3. second month PSA was 18, third month PSA was 28. Doc stopped Orgovyx this month and I started Lupron injection to see if that brings PSA down.
Had a Pet Scan last month (September). Pet Scan show cancer still containeded within prostate. No cancer anywhere else in body but that does not mean there isn't microscopic cancer cells somewhere in my body.
So now I'm waiting to see if Lupron injection lowers PSA to a point that is around 5 or less. If it is I will remain on Lupron injection until PSA begins to rise. When this happens I'll decide on a orchiectomy. I do not want to have radiation yet if I can slide by it for now. OK, now you have my run down. I have done much research on all treatments and drugs since diagnosed with this crap.
I am also considering cryo therapy, cyberknife and proton Beam therapy. Whole Pelvic Radiation is a last resort. Haventalked to those who had an orchiectomy and say they wish they would have done it earlier. Side effects are very minimal. Still researching and thinking and reading comments and post on here
Your comments seem confusing to me? Did you use those nomograms I suggested?
3+4 was/is a very favorable PCa diagnosis, and more and more, men are given the option of active surveillance when a biopsy results in 3+4. Classic AS also includes another biopsy when PSA increases substantially and permanently.
With your research, you know that ADT, chemical or orchiectomy, is never a cure. Also, having an orchiectomy will not mean that you will never be advised to take secondary ADT drugs.
Another thing.....whole pelvic is not the general SOC for Gleason 3+4 diagnosis.
ADT is also not the SOC...... basic RT is the SOC for 3+4.
Have you looked at the NCCN guidelines for PCa....the SOC guide/bible for many urologists and ROs.
again, I suggest you check out those nomograms.....discuss what you find there and NCCN with your Doc(s).
Good luck..... we all need that!!!
Sir, I had one removed, it was no big deal. Western medicine is so damaging. Pelvic radiation , mine was 2009 for 3 swollen lymph glands. Over time like now both hips need replaced, one femur has collapsed and the small capillaries that supply blood to my femurs have been damaged. Without adaquate blood supply my bone marrow has been affected. So pelvic bone marrow damaged by radiation and years later avascular necrosis collapsed femur. No cartalige in my knees, can't walk on my own and platelet count too low for hip replacement surgery right now. Not good.
My husband had an orchiectomy in August. It was a simple procedure with little pain. He was on eligard, abiraterone and prednisone. He was able to drop the eligard (adt), but still takes the abiraterone and prednisone. He's glad he did it.
I would go with the orchiectomy and save radiation as a backup.
Any form of ADT is no picnic. Orchiectomy is certainly the most efficient. I had one within 30 days of my diagnosis, so I by-passed the side effects of Lupron. Folks with the big O also have less bone loss (all other factors being equal). However, there are still some big side effects from an orchiectomy: fatigue, depression, weight gain, edema and all kinds of atrophy.
It took me over five years to talk my oncologist into it, but once I got on estradiol patches, I undid all of my side effects. My prostate and mets are now minuscule compared to what they were. PLUS: I no longer need an indwelling (permanent) catheter.
Why did I want estradiol patches? The people here and elsewhere who seem to live the longest and happiest had big time estradiol after castration. My experience backs that up, but OBVIOUSLY your mileage may vary. I wish I could have started on the patches earlier.
I had them removed a couple of years ago after 7 years on Lupron. Lupron was driving me crazy and I have not regretted my decision at all. I did not get a chance to discuss prostheses with the surgeon and have been very surprised at how that empty flap of skin bothers me.
I'm only 74 and am way ahead of you in that I have extensive mets and Pluvicto, if it works, will give me a little more time.
I'd say go for it!
Also, if your cancer is confined to your prostate and is only one small area doesn't that qualify for HIFU (high intensity focued ultrasound)? No radiation and they just ablate the problem area, as I understand it. I do know there can be complications with scarring and debris. Just a thought, I'm no doctor and I don't even play one on TV!
I know a guy who had prosthetics, and hated them. They're not attached to anything, and they sit in the scrotum like a couple of rocks in a bag. Not very satisfying, and for him they were so annoying he had them removed.
My scrotum tissue shrunk quite a bit over the last 4 years, though it's still there. I have thought about another procedure to have that removed, but I don't think it's worth the expense and another recovery. Removing it is apparently a relatively significant operation. It's not as simple as it would seem to do it properly.
Orchiectomy does not replace WPRT, just to repeat. Orchiectomy permanently removes your primary sources of testosterone, that's all. No more, and no less.
My initial diagnosis suggested a 40% chance of pelvic lymph node involvement, back in 2013. So I had WPRT to 54 Gy, then radiation concentrated to the prostate to a total for it of 79.2 Gy. This is another anecdote, a sample of one, but I had no side effects from WPRT. Along with the radiation treatment(s), I had 3 years of Lupron.
After about 3 more years, my PSA was rising in biochemical recurrence, so at that point I decided on an orchiectomy, since with my G9 5+4 case, I wasn't interested in "ADT holidays".
Ponder this before you Snip Snip.
GUTS - Is arriving home late, after a night out with the guys, being met by your wife with a broom, and having the “Guts” to ask: “Are you still cleaning, or are you flying somewhere?”
BALLS - Is coming home late after a night out with the guys, smelling of perfume and beer, lipstick on your collar, slapping your wife on the ass and having the “Balls” to say: 'You're next, Chubby.'
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 10/21/2023 10:53 PM DST
SPINELESS COWARD - Is me faced with either of those choices
Casodex worked for abour 3 years but then it came back and I had Brachtherapy (Radiation). That lasted 4 yeara and I am now back in Casodex
BCR after castration
Continue Casodex or move to Lupron?
How can I be sure that cancer is not progressing
