Has anyone in our community managed to stay "sexual" on hormone deprivation/Lupron? It sounds like the death knell. Is that loss comparable to the other side effects of ADT: h flashes/lethargy/weight gain. Is Ed and no urge the worst of it? Really would like to hear some comments on this.
Is ADT the end of sex? : Has anyone in... - Prostate Cancer N...
Prostate Cancer Network
I was just getting Mr. Happy to stand at attention about three months after surgery (with the help of Trimix and pills) when I started Lupron. Now Mr. Happy is Mr. Sleepy. Gave up taking the shots and pills.
Hope others had better results.
You might want to check Richard Wassersug's book:
"Androgen Deprivation Therapy: An Essential Guide for Prostate Cancer Patients and Their Loved Ones".
He talks about the problems of reduced libido, and has some suggestions for keeping one's sex life alive, in spite of it.
Thanks, Dr. Who, I guess I wanted to hear a few more voices from the "front." Stay healthy.
I have been on Lupron continuously for over two years now. I am still able to have erections and have sex. But I have no libido; I hardly ever think about sex; I have no sexual desire (just the desire to be with my partner.) Once we start fooling around though, I can usually get 'turned on'. Though sometimes I simply cannot get an erection. I can't always tell if I have an erection or not. Often the erections do not last as long as I would like: I can lose an erection in the middle of sex. It is also much less likely that I will have an orgasm than before I started on Lupron: I really have to go for it, I have to focus, and I just have to have the right circumstances to get there.
Levitra also works alright for me. But I can almost NEVER have an orgasm with that. And sex is actually less pleasurable. And those drugs make me feel flushed and hot.
The lack of libido means that there are also no nightly erections (or 'morning wood'). I believe that the lack of regular blood flow is responsible for the fact that my penis that has noticeably shrunken! And it also curves a different way than it used to. So... caveat (just from my personal experience): USE it or LOSE it. Perhaps more regular masturbation would help this. Or a penis pump.
So... I feel like I am one of the "lucky" ones... for now. Part of the reason I kept some sexual function could be because I am younger than average for PCa. I was 'lucky' enough to be diagnosed at age 43. I am 48 now.
Sometimes I go weeks without any significant hot flashes. At times I break out into a full blown sweat in the middle of the night. By my own symptoms in that regard have been very tolerable... just an inconvenience for the most part.
I do think it also affects my mood, and my cognition. I am more scatter-brained than I used to be; less focused. More emotional.
I have not had uncontrolled weight gain. I have always been pretty fit and active... so I keep that up.
I've not really noticed myself growing breasts yet either
So there is hope for a milder response... I was braced for the absolute worst. I actually tried to avoid ADT for fear of the symptoms, but with a rising PSA it became unavoidable.
Thanks for sharing. I hope things improve for you.
Tak Druk, Can't tell you how much I appreciate your considered response. I am by no means a sexual hound--not at 65 yrs of age--but I do have a warm relationship with my husband, who needs to join me on this journey. It's so helpful to hear another man speak of the fear and anxiety that undertaking hormone therapy--any invasive or injected treatment--can cause. I do think age is a factor. My libido is on the wane now. I will keep in touch. You've made it much easier for me to take that next step.
I was diagnosed at 46 with metastatic PCa, and I could totally see myself throughout your post. Capable of erections but zero libido. As you say, partly "lucky". I have to push myself to jack off just for the form and habit, but my usual frenetic sexual energy is totally gone. More than a year before my diagnostic, I also ended a 10y+ relationship with the greatest love of my life, and I have to say now, the prospect of getting into another seems impossible, and it does make me blue at times. It would definitely make it easier for intimacy etc but it is what it is. That said, I'm otherwise in pretty good spirit. Hope you are as well, and most importantly have you still escaped the growth of your breasts
Well..., the reality is..., we have 2 choices. Leave the cancer there and growing and continue to have sex until it kills you, OR if sex is that important to you, have the cancer removed, and if necessary, have a penile implant installed. As an American Cancer Society Mentor, I tell those who call and ask about this issue; "your erection won't do you or your partner much good in the coffin".
You may be interested in the book written by a Dallas area patient entitled "Dead Men Don't Have Sex". The author is Robert Hill. You can find book reviews on Amazon if interested.
Quite the rush to judgement here. I am married and my husband is fearful and anxious about my treatments and how they may impact our life. Believe me, sex--the having of it--is not the issue. I simply want to find out if ADT will have the same sexual side effects for all of us. Call me naive or aspirational. I am fast learning that the physical component will be drastically reduced. But I will give a look at your book.
If you really are an American Cancer Society Mentor, ng2786..., you might want to temper the tone of your rather flippant rely. I was not "poor-me-ing." I simply want to know if sex with Adt is possible. I have a partner and I want to be really informed. As to having sex, great if possible, but it is by no means a deal breaker for us. I am really surprised that have not be cautioned before to use less provactive language. Maybe I am just too damned sensitive. Thanks for the reply--I guess.
ronton.., my apologies to you for using what you thought was a flippant reply. It was not my intent. However..., in my 24 years as a cancer survivor, a facilitator of a group and a mentor, that sadly more than a few have "valued" their sex life more than taking the necessary action to prolong THEIR real life. While the phrase about taking your erection to the grave is a bit hard hitting, it is the truth and a fact just as your cancer is. Too often, when the truth of the matter hits home, it's too late. Nice words are nice, but sometimes they do more harm than good. especially when it comes to a potentially making what turns out to be a fatal bad decision. Good luck.
Your apology is appreciated. I imagine that with SOME men you must use extreme language to get them to face reality. Perhaps those men will never be convinced. And who is to say what QUALITY of life means to them. I still believe that kind words are essential. And listening with heart and mind are the tools that prompt us to act in our best interests.
I feel as though "calling a spade, a spade" is the issue here. Calling Chemical CASTRATION...by the name "Adt" makes it sound like a possibly pleasant choice. I have called it CASTRATION from the moment I got my first cancer diagnosis. Taking Lupron IS chemical CASTRATION. If you put it in perspective...it's a better choice than "passing"...which I call DEATH ! ! ! I only started Lupron a little over 3 months ago...it's been EXACTLY what I thought it would be...because I now call myself castrated. I'm not disappointed, instead, I am hopeful as I begin chemo with Taxotere this coming Friday morning that I will see my 4 year old puppy grow old!
This is where it gets so philosophical in many way. Of course death means no life, but what is having a life and living it? ADT is undoubtedly the worst best option for many men, and it does a number on our body overall, not just on our sexual life. I always been a very sexual person throughout my life and relationships, so for me it's part of how I express myself and connect with my partner. It really changes the whole game. And of course, I am more than just that sexual part but still...this new normal is a tough one, and am still figuring out and pushing for the best life worth living under this awful circumstances
I was diagnosed at age 57 and treated with radiation with adjuvant (alongside) Lupron. I had two injections, one nominally 30 days and the other 90 days though the total Lupron effect lasted about 5-1/2 months. I can't say if my experience would be the same if I were older or on Lupron for a much longer time.
The Lupron destroyed all of my libido. I had zero desire for sex. It was as if I could look at a beautiful woman and still notice that she was beautiful, but not be able to remember why that was important or interesting. I was still very much in love with my wife but had no desire at all for sex. If she were to touch my penis it had about the same effect as if she were to touch my thumb or my ear.
After some weeks of no sex I decided to try anyway. I thought that, even though I wouldn't get anything out of it, I could still stimulate her. She, after weeks of no sex, was very receptive. So we started and I did my best to get her aroused - planning to bring her to an orgasm and then quit. But a strange thing happened. Her arousal got me aroused. By the time she reached an orgasm I was pretty excited and even had an erection - which I then used in the normal way.
So my advice is, try to have sex. Do it for her sake. Try to please her. If you succeed, you may find that your own interest comes alive.
We had sex about every few weeks after that. It was an effort for me to start every time. Even knowing that I would become aroused, I wasn't at all at the beginning and I had to just go through the motions. But, each time by the end, I was fully involved.
Best of luck.
Excellent advice, Alan. I also think just getting into the "act" can foster excitement. Really appreciate your thoughtful reply. So many men are willing to share ideas and thoughts. Immensely helpful. Thanks
ronton2..., 20 years ago I had to have actual castration in order to stop the growth of my cancer. Having previously had the PC surgery my erections were already gone. The procedure worked, but it made me have hourly hot flashes for 18 years. Finally 2 years ago my urologist suggested I try monthly testosterone injects in order to stop the hot flashes. That treatment was considered to be slightly risky at the time due to the possible reaction to the cancer as well as heart issues seeing I had suffered a heart attack. I took a chance and it worked for me as studies have shown that the risk FOR OLDER MEN is slight and testosterone is now considered helpful to the heart for some of us. There are other ways to have sexual activity if one is willing to try AND a penis implant is a widely used method as well.
Shortly after my first Lupron shot I had no libido, severe ED. This went on until one month before my next shot (6 months between shots). I became depressed at the loss of sex big time. I decided to try sex by "forcing myself" to try it though I wasn't interested. I had increased libido by watching porn. This encouraged me. I read that book about sex in men with PC. That pushed me to try penile rehabilitation of my own design. After two weeks my libido increased and I am almost back where I was. Still had ED but some libido and not so depressed. MORAL? Be proactive, positive, and learn about men like yourself. If necessary, I will try injections or an implant but I am NOT giving up sex!
Steinmother, I have been having flashes of the old libido lately, which suprises me. I like your phrase: "Penile rehab of my own design." I, too, an on Lupron/Zytiga for many months. My interest in porn is zilch. Confession: I have been afraid to look at porn since ADT. It used to be one way to "rise." I am going to give your method a try!
If you don't use it you lose it! Seriously, it will shrink into a useless tag of flesh and you will be a eunuch. Stimulation over time will reawaken those unused neural pathways between the penis and the spinal cord. Thinking about sex (porn) will reawaken the brain and you're off and running. You may not have much testosterone but you will have some sex. The book talks about doing exercises three times a day.
Stein, You are a phrase-master: "useless tag of flesh." If that doesn't resonate nothin' will. What book are you referring to? I must have missed it cuz I have purchased a half-dozen on PC (treatment, diet, personal stories, medical tomes).
Hey Guys, I am 58 years old, and I was diagnosed with PC in January of '18, and had a radical prostatectomy last August, which spared one nerve bundle. Since then, I have been struggling with PDE5 inhibitors and bimix injections with some success.
Recently, my PSA levels began to spike, indicating an aggressive biochemical recurrence. The doctors are unable to detect the source of my rising PSA, so the hope is that it's still regionalized to the prostate bed or pelvic lymph nodes, and not yet systematic. But realistically speaking there is a strong likelihood that my cancer has metastasized to some distant location. So my oncologist has prescribed salvage radiation, ADT hormone treatments and an androgen receptor inhibitor, that I begin this Friday for an initial 6 month trial period. (Please excuse any misuse of medical terms on my part, as I am still new to all of this.)
Now I've been reading all of the posts on this site, and first, let me say, I greatly admire everyone here for fighting the good fight in their own way, and describing their experiences and feelings. Sincerely. My hat's off to everyone here.
But in reading your comments, you folks paint a pretty grim picture, at least from the outside looking in. The side effects of the treatments that I'm about to undergo seem daunting, even overwhelming.
To complicate my situation, my wife recently died last October after a long, drawn-out, miserable battle with cancer that lasted two years. And now I find myself alone and depressed, still trying to recover emotionally from my wife's passing, and with little chance of ever meeting anyone and finding love, passion, intimacy and companionship again. I mean, I just don't know how many women out there are looking for soft, chubby guys, with zero libido, hot flushes, mood swings, man boobs and shrunken genitals.
To further complicate matters, I have two school aged kids, ages 16 and 18, but very little other family. So needless to say, I feel a strong obligation to stay alive for my kids. But other than my kids, the situation seems really depressing, as I said before. If my cancer indeed has spread distantly, I am probably looking at a life sentence (for however long or short that might be) of hormone therapy treatments and then chemo. As you folks have described it, it doesn't seem like living. It seems like existing.
If it weren't for my kids, I really wouldn't mind checking out. And I don't say that in a morbid way. I've had a full life in my 58 years. I've had a lot of great experiences, a loving and fulfilling 23 year marriage, two wonderful kids and a successful career. But the next 5 to 10 years, or however long it realistically takes for the cancer to catch up to me, seems as if I'm going to spend trapped in illness, depression and solitude. The alternative seems much less painful in every way.
Anyway, thank you for your time in reading this post, and I'm sorry to burden everyone with my problems. I know you all have your own problems. And I am not really looking for answers; I am really here to vent about my situation. I don't have anyone else I can talk to who would even remotely understand my situation.
Hey Murph, I get what you're saying. The whole full life, lot's of experiences, now facing a crappy situation without your partner. One thing I have found going through this stuff (prostate was removed in November) is life has more paths than the one you think you're on. Just don't shut the world off or yourself in. I'm back working, would love to retire, but working keeps me meeting people, keeps me engaged. It doesn't have to be working, it can be anything that provides opportunities to meet new people. Exercise classes, political meetings, volunteering, walking down the street meeting neighbors, maybe moving somewhere that has a social framework. Just don't shut yourself off.
You may be surprised to meet someone that is going through similar issues as yourself. The older you get ( I hate to say it) the more people have issues. I'm 66, active, and feel the world getting smaller all around me. But...I know the world can be as big as I want to make it. But you have to make the effort. Deal with what you have to, then start to explore. Take every opportunity with the idea you may just make a friend. That friend may open a door and suddenly you are on a new path, one you didn't even know was there. It happens over and over. Just look back on your own life and did you ever think you'd be where you are. But interestingly you got here. Just keep going, act like its a job and engage. Good luck!!
Thanks Jgrabr. That's sage advice. Thank you for taking time to write such an insightful response.
To update my situation, I'm now 9 weeks into my hormone treatments and 2 weeks into my EBRT. The good news is my PSA has dropped to near zero, but the bad news is that I'm starting to get menacing readings on some of my blood tests (high neutrophils, low platelets, low lymphocytes).
The hormone treatments are pretty bad. You folks were not exaggerating. My thermostat is way off. I'm chilly all the time, except when I'm sweating profusely. I experience 5-10 hot flashes a day. I have fatigue and depression, and break into tears frequently (and I was never a big crier). And my concentration and attention span have been reduced to seconds.
There is good news. My kids are going well, from which I gain a great deal of satisfaction.
I am much more patient and measured, and I no longer get angry. And I have not gained weight or grown breasts as of yet.
I am trying to maintain a relationship, although I have not been honest with her about my medical condition, so we'll see how long it lasts. I have been able to maintain some level of sexual function through PDE5 inhibitors and bimix injections, although sex has become pretty mechanical for me and lacks most of the passion and pleasure. On the other hand, I am more understanding in this relationship, and I talk and listen more. And I appreciate her and my relationship with her more.
But the thing I miss the most is that joie de vivre. I miss being exciting and joyful about life. I miss waking up in a good mood looking forward to the day.
I literally count the days until the end of my radiation treatments and 6 months of ADT. And I am so looking forward to at least 6 months off from my treatments. And pray that my PSA and blood levels will remain stable, so I don't have to go back on ADT semi-permanently or permanently.
All in all, I guess I should consider myself lucky so far.
Ditto. A brilliant map for living!
For all the reasons others have stated I rejected ADT from the get-go. I was told by my urologist that "we do not operate on men over 70. You have to have radiation." The radiation guy said RT+ADT . I read the side effects of chemical castration and said " no." I am 7 months since radical prostatectomy, have undetectable PSA, have good libido, have no hot flashes, boobs, osteopenia or muscle loss. Yeah, no erection. Miss that. But sex is good, orgasm is good and more partner is loving and patient.
Are Tak-Druk, StephanB, AlanMeyer, and steinmother. still around?
I found a 2004 study that seems to say that testosterone is not needed for any sexual function, that the 70% of their subjects who were not having sex were chemically capable, but did not due to lack of interest (libido) or expectations that they would not be able.
In the meantime I've had conversation with Dr. Richard Wassersug and told him of my experience.
I took a proactive route similar to steinmother and StephanB and was able to be fully functional through a 6 month schedule of lupron including up to 3 orgasms per week. The actual mechanics of arousal with no libido, producing an erection, then producing an erection that did not evaporate at the least distraction was quite a learning curve. My wife and I got some laughs out of it, but it would have been nice to shorten the curve.
So now I'm on a mission to spread the word.
I'd like to find out whether you gents are willing to discuss the nuts and bolts of intercourse while castrate. I'm toying with the idea of writing something like "Sex manual for Castrate Men", but not only on my own limited experience.
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