I was diagnosed for advanced prostate cancer with lymph node metastases in Nov ,2015. Since the time of diagnosis I am on ADT ( lupron) injections every three months. Four months back the disease turned to castration resistant. My M.O has added zytiga. But I have to still continue Lupron injections. I am looking for the possibility of an Orchiectomy as an alternative for lupron injections to reduce my expenses. Is it a good decision? Has lupron got any additional advantage? If somebody can advise me in taking a decision.
ADT or Orchiectomy: I was diagnosed for... - Advanced Prostate...
ADT or Orchiectomy
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dress2544
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90 Replies
•
Hi, I'm not sure? Sorry I'm not much help, but by reading everthing people post it seems like it's a good idea, get rid of the source. That's what they are saying, makes sence to me. My husband was Dx nine years ago, PSA 483 at the time, oncologist nor urologist never mentioned that way back? I often wonder if my husband had the operation would it made a difference now at this late stage. It was a long road and now his oncologist mentionred chemo every week for the rest of his life?? He just went off taxotere thos past summer and it failed him?? Worried and scared of what the next step will be??? Hoping for a different treatment, clinical trail or such. Good luck, keep us posted as to your decision. Hang in there!!!
Lynn
Hi Ronnie, im not sure really but i have been kickng the idea around. I have been on ADT for 7 years and wonder what part of the side effects i have are from the Lupron or not having any testosterne. For years i wouldnt consider Orchiectomy but now im changing my tune since im pretty much trashed down there already and will be on ADT for the rest of my life. If you will have to be on Lupron forever like me i can see the benefit especially if you are paying out of pocket for the injections. Good luck!
Thomas
When I was on lupron that long , I stopped, and my T never recovered, so Idid not need Lupron. 4 years later t got up to 44 so I restarted. Not sure if that would be the same for you. After a while our T does not recover.
Ask you Dr. Of Course Orchiotomy is a simple procedure and not very expensive.
Hi Thomas, Don't ask me why I put a contact as Ronnie, my name is Lynn/caregiver, my husband is Sam. He was Dx at age 65, now age 74 young. He did so well for the nine years, casodex, hormone needle. Cancer came back this past summer, way more aggressive, we are waiting now for biopsy results on a cancerous lymph node. Let us know what you deside to do? Good luck and like I said I wonder if way back Sam would have had the operation, if it would have made a difference for him???
Take care, Lynn
• in reply toronnie1943
Lynn you made the right decision at the time. I’m in the ( O K. ) Status now ;no PSA or signs. The future has a shadow cast on us. So I will enjoy this day. Our first needed rain in a dry desert today. We dance for rain. You precede my wife and i in this journey. I admire those 9 clear years. I pray for that for us newbies. Happy valentines day it should be everyday that we praise the people that we love. May God bless you and Sam !
• in reply toTjc1
The side of effects of not having testosterone are the same for both the ADT shots (Lupron etc.) and orchiectomy.
• in reply to
That is correct !
If You Type In Charles Eric Winter In Our Search Data's Base. He Had this done. It may take some reading. Hope This Helps.
Jackie
Than you all for sharing your views regarding lupron v/s Orchiectomy
Drugs forever or Orchiectomy. Not hard for me to make up my mind... set up for operation one month after finish of chemo. Nothing left down there as is. With fast growing, aggressive, invasive and incurable PC. don't need drug side effects working on liver and kidneys later on. Also on Lupron, prednosone, and xtandi with my chemo at this time..8 treatments in and 2 to go.
Doug
Hi shooter 1
I think by doing Orchiectomy we can stop testosterone production to practically nil. Not necessary to watch testosterone levels periodically. It is an advantage. I don't know how far I am correct in my view.
• in reply todress2544
You are correct. With orchiectomy, you have consistent T levels of around 15 within a few hours of the surgery. You will not have to monitor them ever again. LHRH drugs such as Lupron do not guarantee testosterone levels below 50. With these drugs, T levels can and do fluctuate. Research has shown that consistently low testosterone levels increase survival. And then of course, there is no more going in for injections as well as the cost, pain, etc. associated with them.
erjlg3• in reply to
Learn Something New Every Day!
Why is this oriechtomy not a standard procedure instead of those horrid injections and side effects? I swear I'm not being insensitive. Charles Eric Winter had it done and he was much happier with his new jewels than before he had the surgery. He felt like he had a part of himself back.
Elgie has never once been offered that treatment. Is it Possibly because there's no long term money in this?
Most Sincere question,
Jackie
• in reply toerjlg3
It's more standard in many places in the world where they can't afford the expensive LHRH drugs. Here in the U.S., I do wonder about the profit motive though. The cost of those shots really add up over time.
I see a cultural stigma against surgical castration. It's permanent and that scares people. There's a combination of patients not wanting to talk about it and doctors not wanting to suggest it because they think that patients don't want it. Many people refer to LHRH drugs as "hormone therapy" or "Androgen Deprivation Therapy" not chemical castration which is what it really is.
None of my doctors suggested it. But when I brought it up, they said it was a good idea and recommended that I seriously consider it.
erjlg3• in reply to
That Was Our Other Thought....cultural stigma. Thank You very much Gregg. Very informative.
I hope you're feeling well ☺
• in reply to
Just the thought of castration puts fear in the heart of man. We fought to protect those jewels our entire lives. But APC is permanent also .so I figured if testosterone is deadly to me , I shut down the factory. Done deal !Whoo hoo! The actions we take to live.. peace to all!
• in reply to
Your balls or your life? That is the question. Kind of a no-brainer to me.
• in reply to
A no baller!
• in reply toerjlg3
There's a very real reluctance that I would certainly feel about it. It isn't reversible, although I suppose T supplementation might sort of make the decision reversible. It's a psychological hurdle to get past. If the disease is already castrate resistent, does it provide any real benefit, other than cost?
erjlg3• in reply to
No Pain From Injections, No Adt Side Effects .
• in reply toerjlg3
As far as I know, the side effects are the same, except the injection pain.
• in reply to
And no pain in your bank account.
erjlg3• in reply to
Oh Okay....I thought the injections caused other side effects.
Long term can effect kidneys and liver which process it out of your system.
Thank You Shooter. Wow....It Definitely Should Be An Open Option And All Side Effects Of Both Laid Out On The Table and that you're probably going to be on some type of adt the rest of your life. I know we should do all of our research but some of us are doing as much as our brains are capable of doing through the whole process.
Good Wishes Shooter
☺Jackie
• in reply toShooter1
I believe that.
• in reply toerjlg3
To some.
• in reply toerjlg3
$$$$$$$$$$
A urologist will be reluctant to suggest the surgery because prostate patients are a gold mine to them, especially Lupron injections. The last time I had a lupron injection from a private practice doctor, my cost after insurance was $3400!!! I found out later that their cost was appx $175.
I had my Lupron injection In Thailand it cost $290 for 3 months in Cambodia or Vietnam it is about $190! This tells you a great deal about our Medical system! I can have my injections all my diagnostic work done offshore For a fraction if the cost! And be treated better as well!
• in reply toBobrat
Big pharma lobbiest rule congress!
• in reply toGary94
My urologist didn’t recommend it. My idea only. He was telling his co surgeons in my pre op. “This Guy has made the decision so he doesn’t have to come in and see me every three months for life. In his heart , he agreed. I don’t think I even had a post op. So at 9 -16 i cut the tie , so to speak to my urologist. He’s always there.
• in reply toShooter1
That was my thinking also?
dress2544, I was diagnosed Friday the 13th 4-2015. I imediately asked my specialist. (Dr. Singh = born in India, a sihk warrior that fought for me) about orchiectomy. I was told wait one year . Common sense tells me that in third world countries, orchiectomymight Be first course. I imagine especially amongst the poor.. My prostate was giant . Pc tumors throughout pelvis , blocking bladder and urethra ,two lymph nodes in pelvis lit up ,kidnies shut down stage#4 non op. After a week in the hospital I immersed with bi-lateral neauphostmy tubes and a full time foley.. got a shot of firmagon , traded into eleguard, then Lupron plus also until orchiectomy 9-2016 plus I’m on Tak-700 test drug still. I was totally castrated any way after adt & RT.. Before the surgery I had uncomfort and some weird pains Down there. It’s an understandable fear women have to cut of the boys.. They were with us from the start. All men know that feeling of getting kicked In the nuts though. I spent my life protecting the family jewels. I hate shots and pharmaceuticals. I,was depressed for a few months after the surg. My uro is an excellent surgeon .. No bedside manor.. When he told me my dx he actually was pissed he said “”” I can’t make any money off you because you don’t need surgery. What a jack ass to say that to me and my wife who was not even my wife at the time. So when it came to surgery , I saw him and said finally I got for you Tom
erjlg3• in reply to
So Much You went through and then Such An Ignorant Thing To Say... coming from someone you need to trust.
• in reply toerjlg3
Personally, if I had the brains to be a dr i Wouldn’t want to be a uro. Our urology is something that when bad is debilitating and a dark subject .Mine said I never promised you rainbows and butterflies. They see patients suffering quality of life issues every hour of their working day. it is common place for them. They’re trained a little in the phycology of speaking with terminal patients .After years in the saddle certain type are aloof with EGO,.. they sure might think differently if they or their love one was being treated. It’s always a pleasure to see your smiling face and spirit on my I-pad. Take care. Angel. !!’
Sorry , I had a prob with my iPad. I told the doc I fianally got something for you to chop. Probably made 30k off. that one and he was so happy.. Glad I could help his kids thru college. The surgery went like this. Wife and nurse with me. Guy told im gonna give something to relax you a little .. Then i the nurse and wife. “I’m ready to go” thier retort. “ your done already “ that’s the beauty of propathal. No memory or pain or bad after effects. I was a little soar for a month, not pain just little discomfort. I think due to the Tubes cut needing to retract. I like riding bikes. No balls , I’m better in the saddle no pain .. I thought that side effects would fade, but I’m still on the adt Tak 700 pills .. I am very happy that I did this. I’m feeling great about it now.. Can’t say that it’s right for anyone else. I will do anything that I believe will keep me here longer. . This choice was a no brainer for me.. sorry to rant.. Its one subject that I know about. Also TMI but I have rock hard erections every night when I pee.. just saying...
erjlg3• in reply to
That Was My Thoughts....Whatever it Takes To Keep You Here Longer and to not have those painful shots anymore is like magic. I wince every time for Elgie. They hurt so bad. Thank You So Much For Sharing with us Lulu. I'm Glad it Has Helped You.
Most Sincere and good wishes,
Jackie
Since I have to have ADT for the rest of my life, I elected to have the orchiectomy last July. Since nothing works downstairs it made sense to do this. Glad I did this and it sure is nice not to have those painful Elligard shots (for me) every three months. Don’t miss the “jewels “ at all.
It Certainly Does Make Sense Gary. I'm Glad That You're Glad You Did it. I'm Glad You Don't Have Those Painful Shots Too.
Good Wishes And Thank You for sharing,
Jackie
• in reply toGary94
Exactly! I second the motion....
Here's an article about the comparsion between Orchiectomy and ADT with drugs
medscape.com/viewarticle/85...
Here's a quote from the article:
Fewer Adverse Events After Orchiectomy
In the current study, researchers used the Surveillance, Epidemiology, and End Results database linked to Medicare records to identify participants. The study included 3295 Medicare recipients aged 66 years and older with metastatic prostate cancer diagnosed between January 1995 and December 2009 and treated with a GnRH agonist or orchiectomy within 12 months of diagnosis. Eighty-seven percent of men received a GnRH agonist, and 13.0% had orchiectomies.
Results showed that compared with men who received GnRH agonist products, those who underwent bilateral orchiectomies had:
23% lower risk for any fracture (hazard ratio [HR], 0.77; P = .01);
35% lower risk for peripheral arterial disease (HR, 0.65; P = .004); and
26% lower risk for cardiac-related complications (HR, 0.74; P = .01).
erjlg3• in reply to
Okay Gregg..... so there are.... possibly more and worse side effects from the drug over the surgery. Going To Go Read The Article. Thank You So Much Gregg. Are You thinking you may do This Gregg? Good Wishes Either Way. Elgie Has To Have A hernia repaired sometime...... I'm wondering in my own mind... if he can get both at the same time if he chooses. Probably different surgeons.
Thank You So Much Gregg.
Most Sincere,
Jackie
• in reply toerjlg3
Different surgeons.... a root canal is much worse than this simple snip, snip..After what most of us already go thru anyway, this is simple,I had some depression but it’s gone now. this was the one good decision I insisted on myself . My doc was proud once I made the decision. wife says no really big difference in nude appearence. Addios cajones !!!!!!
erjlg3• in reply to
Good and Easy To Understand Article Gregg. Thank You.
• in reply toerjlg3
I am thinking about doing it. Glad this question came up because it made me look into the side effects to compare the two. I always focused on just the end result being lower T levels and of course the side effects from that would be the same for both. But I really didn't know about all of these indirect side effects such as cardiac issues so glad I looked more into this. We are all learning togther here.
erjlg3• in reply to
Yes We Sure Are learning together. All Very Interesting. I'm Glad You Found The Article ☺
• in reply to
Thinking about it is the hard part. I did go thru some bad depression for a couple months after .I had a macho attitude before APC. Now barely an after thought. I’m more comfortable .They always got in the way any way.
Burnett1948• in reply to
Burnett1948. Has anybody found out if Orchiectomy gives more years of life?
ctarleton• in reply to
A few more editorial thoughts on this same study....
prostatecancerinfolink.net/...
Charles
The up side to an Orchiectomy is that your briefs feel more comfortable.
Good Luck and Good Health.
j-o-h-n Friday 02/09/2018 7:22 PM EST
That convinced me, J-o-h-n. LOL. But seriously, I am debating whether or not to end the drug regimen and "free up my briefs." I will keep you and others posted. Can I expect resistance from my MO?
Elgie Just ask Me that question. Kind Of Sorta.... wondering if MO would be against it....please do keep us posted ronton🤔.
Jackie
• in reply toerjlg3
It s his right to choose treatment. I don’t think they would or could legally ever refuse if insistent upon by the patient..
Jackie, I will certainly post my intention. I, too, am a bit anxious about bringing this up with my MO; still, it is my body. Sort of a "pro-choice" decision. I grow increasingly concerned about the impact of all these meds on my vitals: kidneys, liver and brain (emotional impact). Good wishes to you and Elgie and I will keep you in the link.
• in reply toronton2
Those were my pre thoughts exactly.
I'll post too if Elgie decides to ask the Medical Oncologist Ron. I'm Still Absorbing Info Here. It's So good to see opinions.... along with the knowledge. I have a rough time with understanding the research data sometimes 😉 Hoping You're Content With Your conversation with doc when the time comes. Me Too....The Worry of the vitals. Always Good Wishes For You Too.
🌞Jackie
Jackie, so nice to hear your words of support. Back at you --and Elgie, of course. This site has kept me sane and running. So much to learn. I will discuss surgery with my MO in March but am resigned to the "long haul" and all it brings. Happy V Day to you two. Love those flamingos!
• in reply toronton2
Renton2, just might find that it frees up your mind too.. I tormented myself before the surg.. once done. I said. Why did I do that to myself.. This act for us men is proof of a strong wish to live.
I am 63 and was diagnosed with metastatic PC inSeptember 2016 after initial PSA of 420 and Gleason 9 in prostate (still intact) . Mets to lymph nodes in pelvis and abdomen. After reading Dr. Walsh's book wherein he cites castration as " the gold standard for treatment" since the 1950's, I took the plunge and had the "boys" removed Dec. 2016, mainly because the one lupron shot I had was expensive and uncomfortable. I had bad pain after the orchiectomy for one week but now all is settled down. Now I am castrate resistant, PSA up to 69, and am on enzalutimide. Testosterone 14. No pains, psychologically OK but miss sex and "O"'s.
I am still doing well with a little fatigue the only side effect. Get used to life as a eunuch, chemically or surgically. It's better than the alternative.
Thank You Tim! Surgically Seems Better Than Those Chemicals. I'm Still Sorry For Any Of It For All Of You.
Most Sincere,
Jackie
Well I just asked my hubby again about orchiectomy after two years of lupron. He is busy watching tv but said basically whatever you want dear...just like a man. Was he even listening? He said he was and that I had asked him about it before. I think it’s his decision so that’s the stalemate.
A couple years ago there was a study that showed adt caused brain problems. I would like to know if that’s the same with orchiectomy. I don’t like the other risks of ADT at all.
I think Orchiectomy is much safer than ADT. You know ADT is a chemical drug and Orchiectomy is a natural procedure. No doubt long time use of ADT will have side effects. But the doctors-drug mafia will always promote ADT. It is our decision to choose between Orchiectomy and ADT. Good luck.
• in reply toGrumpyswife
That’s a great guestion. I have cognitive issues new to me .but I’m still on tak -700 another adt drug. I hope the less chemical the better for my brain and body.
i know every persons csncer is different and the way each react to med. and treatment. My husband also has cancerous lymph nodes, we are waiting for biopsy results, but we were told by his oncologist that. Most likely without the results he may have to be on chemo every week or hopefully if he qualifies ,he would be put on Keytruda or maybe a clinicial trial at Penn.in phila??? Keytruda is for lung cancer but could to be helpful with prostrate cancer.???
I'm very anxious, on pins and needles waiting for biopsy results.
Best wishes and prayers for all. Lynn
I see Keytruda advertised a lot and wondered if it would be effective with prostate cancer in lung. We should try to organize by the location of Mets as treatments are unique. I am interested in your husband’s lung Mets and treatment plan as that’s my hubby’s current situation, too.
Hi, I'm sorry if I mislead anyone about my husbands cancer, Sam does not have lung mets, The oncologist recomended Keytruda that is helping so many with lung cancer.They now found out that it's also very effected with prostrate cancer in treating LN. I'm hoping that when Sam's biopsy comes back that it shows the right mutation to qualify him for Keytruda. I'm so hoping that my husband does not have to have chemo again, esp. Once a week for the rest of his life. We live in the surburbs of Phila so I'd Sam does not qualify for Keytruda there are some clinicial trails at Penn in Phila.
Ask your husbands oncologist about Keytruda for him, I've read that it does work really well and keeps the beast at bay for a long time.
Let me know, fingers crossed!!! Hang in there!
Lynn.
Ok thanks for clearing that up. I would like to know more about Keytruda especially if it's covered by insurance. Hope the biopsy comes back favorably.
I am sure . It s a sense of relief. They ain’t a problem no more. Good luck !
Hey guy. Id like to offer for your consideration a bit of counter-intuitive logic. Please know that the logic does not come from a dispassionate man. I am rowing in the same end of the boat alongside you. Think of it as me uttering aloud my own thought process as one dealing with the same bad luck.
What is the point of castrating a man if the disease one is attempting to control; does in fact, NO longer respond to a reduction of testosterone?!
Further, scientific evidence indicates without bias, that after 18’ months of continuous ADT, the testes in the vast majority of men have been virtually destroyed from atrophy in perpetuity.
Therefore, why consider further ADT treatment whether surgically or medically?
Zytiga, shuts down non-testicular related testosterone production, mainly in the renal system. Again. Why? Now I am to deal with kidney failure caused by Zytiga in addition to living (or dying) from acute osteoporosis caused by Lupron?
Sure they charge a lot of money and stuff, but the driver is not economic. Doctors really do have our best interest in mind and want to give us the best they have to fight the disease. Of course! Yes, we fight! We fight like hell. But it is lost on me how the present SOC really makes any difference.
The mortality rate in men with advanced prostate cancer has not budged measurably for the better since WWII, when they just castrated the dude and sent him home. Even then, life was extended at best by 6-18 months.
• in reply tojimhagood
We re all just doing our best. If the balls are castrated from adt and therefore useless in their purpose in life. For me it was like trimming the dread branches from a tree. Mine were uncomfortable and dead. I feel better. Surely not for everybody!’
• in reply tojimhagood
I too am facing osteo . I’ve always been an aggressive fighter for myself and those around me .I did orchiectomy as well as a complete 360 diet and lifestyle change .I agree! It is lost on you because you haven’t had an SOC. I’ve have and I feel better That’s all I’m saying.It was my choice, not mandatory. I’m not trying to enduce others to follow me . Just sharing my experience ..Thanks.
Sorry I didn't see all of the responses to your orchiectomy considerations and started a new post. I am new to this board but loving it.
I still think that if 87% of men are opting for ADT there are plenty out there who aren't willing to voice their opinions, fears or are the strong silent type like my man.
I am reading the positives from all the men who have had orchiectomies but why don't more guys go for that since there seem to be so many advantages?
Here is a link for a long article that lays out the effects of ADT and I was especially interested in the cognitive and affect side effects. More reasons to consider orchiectomy which may have some of the same side effects as ADT. The doc today did not try to talk us out of it. He thinks it's reasonable for hubby at this stage.
I too had the orchiectomy because I knew I would have to start Zytiga once my PSA went up which it did and feared the long term side effects of Lupron combined with who knew what I'll be taking in the future. Although Lurpon works... I can't find anything that states it works 100% of the time on 100% of the patients. After having the out patient surgery and hobbling around for a weekend, fine in a week, I'm confident it is 100% effective without those side effects, or sure feels that way. Its been about 4 months now.
• in reply toTenscTexan
It’s been a year and a half . I m better off I feel positive now. Although I did suffer some depression post surgery. You know ? Poor me . That passed too. Either way! No going back for the Ball less . Dr told me that you could get implants but he said who’s gonna see it. It may sound weird to others but to me it’s a relief!
TenscTexan• in reply to
It was a relief to me as well. I had two doses of Lupron and everything had shrunk down to the size of peanut m&m's anyway, but had to wait for 3 weeks after chemo for surgery. Hoping it would settle my PSA, my 100 day checkup after chemo had a spike in PSA, so the surgery didn't work, nor would have Lupron. So immediately to Zytiga. Some re occurrence or growth of bone Mets remaining after chemo, so now the wait to see if we can get it down and for how long. Looking at posts about Zytiga, it doesn't look like anyone takes it for more than a year or two, and that's if it works.
• in reply toTenscTexan
After time on ADT I was the same . The boys shrank to nothing so it was for me the ultimate manscaping . I cut of the dead wood. On dogs they say castration prevents cancer. Dogs get prostate cancer. Mans best friend. Poor guys. I feel orchiectomy is an honest effort to maintain my temple that looking back in my rear view mirror I did a poor job of to let myself get to stage 4 before getting a Psa. No going back now. We move ahead through a barrage of APC attacks who’s intent is to snuff out our very being.Even if one has found total enlightenment or has a super strong faith. We all have days that put salt on our happiness.. Quoting another APC warrior “ I’m not going to go off quietly into the night with APC. “ We all know there will be much suffering in the future. You’re walking a tight rope, we all are, I’ll do whatever it takes to be around this precious earth another day. I would not say that it didn’t work for you. I believe it’s all around better for us in the long run. If lucky we ll be playing with new and improved drugs in the near future. The waiting and not knowing is the monkey on our back now .APC used to be the three hundred pound gorilla in the room that I ignored. So I accept the chimp on my back as the baby of the gorilla that wants to kill me.
CSHobie• in reply to
Both Whimpy and Texan, thank you for these messages.
At 52 I am staring into the future of life long ADT from APC. After 6 months on Eligard, Prednisone, Zytiga, and now also Blood pressure meds, I am going to book the Orchiectomy. It has been a difficult decision. To summarize, it feels like Lupron shots are a very good temporary solution. If you have a temporary problem, I would jut stay with it. Unfortunately I have the permanent problem, I need the permanent solution, snip. The way it was explained to me, even in a hormone resistant state, after the Lupron fails, I would still need to take it, because increased T will still make my disease worse. So for me that means ADT is permanent.
Almost every Dr I have asked, say there is almost no difference, but they don't know. Drs here are trained to read from the book, they follow standard protocol, they don't know the future outcome of my treatment. None of them have said that the snip is a bad choice. It is the brave and unpopular choice.
Hoping to get less Brain fog issues, less headache, mental improvement, less future problems with Cardiac, and Osteoporosis.
F it ! Book it up . No looking back . No cajones doesn’t prevent me from nightwood .. Now if I could convince the missus to come over to my side ??? 😂 I was shots for life or until failure. I’ve skipped 3 years of tri monthly Lupron shots. Liken this orch decision to a level headed no brainer.. my uro that did it bragged to his cohort surgeons before he snipped me. He said “ Those guy doesn’t want to come see me for Lupron shots the rest of his life “ They nodded in agreement. There high cost drugs are a scam. None of its good for us . But when t threatens our life shut down the plant ? I imagine that in a third world country that an orchioectomy is first line defense? My Sikh Prostate cancer specialist had me a year to be sure. I relegated my to to living without nuts or testosterone. I don’t miss the boys . But no t is no joke either. Hopefully I’ll find a safe way to experience t again in the future. For now it’s just a distant thought. Wimp -out 🌵😳
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