I have metastatic disease in bone but still feel good enough to work every day. Have taken most every medicine all of us are familiar with and am now on lupron injections every six months, Jevtana every three weeks and Zytiga at half dose (two tablets ) once daily. Since I will probably always need ADT for life I am considering castration mainly to stop any side effects of at least one med (the lupron ) as I continue my journey. My spouse and I are comfortable with the fact that sex is a thing of the past as we move on . Any thoughts on my consideration of surgery for this 76-year-old ? My current PSA is 114.
Considering castration surgery - Advanced Prostate...
Considering castration surgery
Surgical castration is a good option if you are going to be on ADT permanently, but don't expect any difference in side effects. The side effects of ADT come from the loss of testosterone, not the method used to make that happen.
Zero “T ” is the culprit...
Why incur the inconvenience and expense of shots anymore?
Before Lupron was invented, having a orchiectomy was standard procedure for prostate cancer..Having that operation is much cheaper than just one Lupron shot..And it's more effective....It's the psychology of the whole issue that makes most men choose Lupron...Even when ADT stops working as may be your case, they want you to continue with the ADT...Have you looked into any of the secondary or non-standard treatments ? BAT, Provenge, Lu-177, (which will replace R-223) ...What is your PSA doubling time ? There is no sense in continuing treatments and drugs that are not working...
Choose your surgeon carefully as there can be complications. Have on hand a good tight supportive underwear or jock strap type thing to wear afterwards.
Be aware you will not be able to do BAT therapy if you have ever thought about doing that. Husband still has hot flashes but is on enzalutimide.
My husband’s and his at age 74. He enjoys not having the injections and I enjoy not having to plan our lives, which we attempting to live to the fullest, around those injections. However, the Docs are not as happy to see us anymore without the injection money.
There is lots of good advice on here about orchiectomy when you search it.
One of our MOs thought orchiectomy was kind of barbaric.
to me i was on the eliguard/lupron shots but to me they were painful and remember they only reduce ones testosterone. over time it reduces your bone mass, and normal males carry 200-900 testosterone. when mine got to 3 i stopped it until it reached 38. remember its your/his body oncologist to me are maintenance docs that's all with 3,000 a shot course they don't want u to stop $$$ in there pocket. i just took the treatment called PROVENGE 74,000 for each treatment but cost me nothing. they take out your white cells and mix with meds and put it back. its builds ones immune system and lowers part of your psa but once the cancer is there and not gone u will be fighting this for the rest of ones life. i will look up this med u mention going thru cancer nw where i live.
charlie
Great luck with the Provence.
Hi mjbach, any suggestion in choosing a surgeon to do the surgery? And besides the hot-flashes did he have any other side effects? Sounds like it was a good choice for your husband to have the orchiectomy...lastly, did he ever have any kind of hormone therapy?
Hi Billy, I replied earlier today but it didn’t show. I would post your general location and that you are seeking recommendations for a surgeon on here.
My husband has no regrets even though his orchiectomy wasn’t simple. He doesn’t miss the shriveled up orchids or the injections.
He has hot flashes started with Lupron. He just sleeps in his underpants and has the ceiling fan going full blast. He hasn’t gained much weight but is on Xtandi which causes other issues.
Any urological surgeon can do it. Very simple.. I was 55 at the time.went thru some depression after. Not much pain at all.. now 2years later those jewels 💎💎 are just an after thought. No remorse..
Normally orchiectomy is not even discussed unless the patient volunteers. I did. My response to the MO is , Advanced Prostate Cancer is
hey i have reade everything about castration and guess what it makes no difference. have radiation/or surgery what will happen the psa will go up after some time which means other then having no balls it doesn't stop the psa. i was free for 3 years and the nexst 7 years my psa was up and down. took most of the meds out there and found the new treatment since 2006 the best is PROVENGE and all that does is prolong dieing and building up ones strength with some lowering of the psa. i've been fighing this for 10 years and i feel fine. my only problem is getting or finding zytiga
Charles, what side effects did you have on Provenge?
And did you have it alone or with some kind of hormone therapy?
lost wt but that was due to me fixing dinner. had carfe people taking care of my 100+ year old. having the port put in and sitting for 2 1/2 hrs and 2 hrs at some time was the biggest problem. u will never have to go through that again ever. each year u battle the cancer the chances of living longer they are always experiencing new drugs and treatments.
oh some males have minor problems and some was from the head. staying quiet for 2 1/2 hrs is tough but i started to watch tv and it ent faster. usually three is flushing the line,changing the bandage. i went with a port which means it can go faster and the port stays in for the 6 wks. arms are harder to stay open bending the arm making it not move would be a pain for me. they put u to sleep when the port is put in and some pain after but when u have it in for a couple of wks u are fine. baths are the best, your not suppose to get the site wet even though the cover it pretty good baths is what i used until i was done with the treatment. now the psa will drop some but its goal is to build up ones immune system,lost some wt but that was it.
charlie
Very honest.
I went through Orchiedectomy as the first line of defence 7 years back. PSA fell from 12.6 to 1.2 in three months, and 0,12 in six. Mainly because I was being treated by an Urologist at that time.No follow up treatment at all. I am sure if I had gone to an Onc.,it would have been Lupron!! It is a quick an not complicated surgery, The social paradigm where I live is not strongly against loss of testicles. Anyway I did not go about telling everybody!! I had no side effects for 40 months, despite what Greg 57 says below except for the anxious watch of PSA going up slowly. Yet again if I had been on Lupron + Casodex for 42 months, the overall effect on sex life would probably have been the same. But I am afraid after a mere 3 1/2 years, I had to go on Casodex, but not Lupron. I am afraid there is no permanent victory against this bully beast. He finds a way to beat you with a big stick, given time. Sorry to be negative, but factual.
It’s better to face the truth about this bitch. It’s a real MF... I don’t have any kind words for APC... You have ten years experience.. amazing. Keep swinging!
The Lupron is doing that for you, or at least it’s doing it for me. But don’t give up yet. Had a nice surprise after 26 months on lupron , my lady and I managed a little sex without any help from drugs. Never give up. Fight the good Fight
I had so much ADT for such a long time that my testosterone shut down completely even during a 1 year drug holiday with no meds at all. Use of estrodiol patches as part of that ADT also helped shut testosterone down and gave me better control of bone density loss, better memory, better joints, more energy, no hot flashes, and overall feeling a little better. NOTE: Have to take aspirin to thin the blood because estrogen thickens the blood and has a clot risk if you dont use a blood thinner such as aspirin.
Was surgically castrated 2.5 yrs ago after 8 yrs of constant Lupron every 6 months. Scared of the 19K charge every 6 month for Lupron as was loosing my insurance because doing early retirement (62). Not sorry about making the decision. As I have retired I am actually much more active and under much less stress now. I also eat MUCH better. I am staged as T3B. No mets at this time. PSA doubling time was 4 wks if off of Lupron. I had RPS and 18 rounds of radiation 3 months after surgery. My PSA began climbing rapidly 6 months after radiation. Went to .08 to 2.5 in 1 month. ADT has been successful so far but told it will stop working at some point and will get into my bones.
Here is some of changes I noticed from being on Lupron to being surgically castrated. It is possible others may find other differences.
1. PSA dropped to .05 which is lower than ever experienced on Lupron.
2. PSA has held at consistently at .05 to .08 for 2 yrs.
3. Gained weight and have hard time controlling. On almost pure Keto diet just to hold. I am very active and do a lot of physical work on home in the mountains.
4. Body and temperature control out of whack. In bed at night I have heat at 62 F and sweat at times. I am adding and removing covers through the night. I keep house at 65 F when not in bed which is comfortable. I heat with wood so it is fun challenge to keep heat regulated. Body just does not seem to regulate as well as did when on lupron. I had occasional heat flash on Lupron and still do now but seemingly not as bad.
5. My breasts exploded in size and tenderness. At times this is very uncomfortable and unsightly. I where oversize t-shirts and don't get caught in the rain:-).
6. My penis shrunk big time. I had to be careful to pull back my foreskin to clean or it got very rank. When urinating, I have to be very careful to pull back foreskin and extend myself to so not to have dastardly dribbles.
&. I don't seem to sleep as well, but this just maybe age.
I know a lot sounds negative but having advanced incurable prostate cancer doesn't have many positives. To control it we sacrifice lots of stuff, to be able to control it cost effectively adds additional challenges. But like Barbara Stanwick said in Titanic when rousting her daughter out of bed. "Get up and rejoice because it's a whole new day untouched by anyone".
What I have learned is hot, cold, rain, snow, sun, clouds, political BS...It is a new day I am darn glad to be here to enjoy it!
Hope some of this babble helps in some way.
Happy Trails & peace out!
Patrick
Sounds like my life. I haven’t sleep more than 11/2 hours straight in four years.. always peeing, day and night. I guess it beats the alternative of not peeing. Been there done that.. I find daily happiness in my wife and nature.. I too am happy to be alive.
Amazing post, thanks for the detailed information. I have had HIFU treatment n 2010 and all good till last 6 months when Gleason went to 9 and PSA jumped in one year from 2.9 to 12.2 Now on Zoladex but considering second round of HIFU, high intensity focused ultrasound, or Castration. Don't like radiation and trying hard to avoid this treatment.
Main issue.... nothing to scratch when you wake up in the morning...
Good Luck and Good Health.
j-o-h-n Monday 10/22/2018 6:54 PM EDT
and its temporary not totally guaranteed keep your balls and read u will find it makes no difference whether u keep them or not the out come is the same
How do you know the die effects are from the Lupron and not the Zytiga? I take both, full dose and suffer fatigue. Don't see how castration would help.
Well? Its counterintuitive to all that we’ve been taught for our entire life’s.. protect the family jewels. I did orchiectomy 9-16. It might sound crazy but for me it is somewhat of a relief.. & no more shots since . I was on dual adt. I’m still on a pill form of a test adt drug . Of which the test failed to extend life and thus was terminated.. I’m on it until or if it fails to keep my PSA down. It’s your body . Do whatever is best for you. This surgery is elective.. It is one proactive permanent move .. I believe such importance is put on the jewels that it’s a severe choice for most men To make.. a big ego and unwarranted fear is why most guys are scared of the simple snip snip. I feel that it was the right move for me..Good luck Sir.
Hi did you go ahead with the Castration? I am 78 and have a gleason of 9 and aggressive Prostate cancer. Currently on Zoladex but also considering Castration, what can you tell me? in 2010 I had it prostate removed by HIFU in toronto and all well until last 6 months. Am also considering doing a second round of HIFU as I don't like side effects of Radiation. Any thoughts? All help very much appreciated.
Terry.