I'm 48 and last June was diagnosed rare very aggressive stage IV cancer (salivary ducts), spread already to bones and lungs. I hope I can post here questions about ADT since there is not forum for my cancer type (too rare). I got 9 cycles of chemo, and after a break of two months and some progression of cancer, two weeks ago I started ADT.
According to literature ADT (I'm a researcher so I have access to all publications and can read them) may buy me 8-15 months, doctors don't give me any firm timeline but it is clear is very unlikely I get two years.
I have a family, small kids and wife, and I can't stand ADT. I have some mild hot flushes that wakes me up at night but is not big deal (yet), what I can't stand is the loss of libido especially towards my wife. I can get not having sex (with chemo I wasn't having time of my life), but knowing I won't fell that attraction anymore is killing me. A few days ago I discovered low testosterone can remains low many months in the body after ADT, and it is unlikely I will have that many months once the cancer becomes resistant to ADT (yet my cancer sucks!).
For those who are in lifelong ADT, how do you deal with that? Anyone straggling or I’m just crazy? Any advice, suggestion is welcome because if my brain tells me I should just be happy to be a father for a little longer, all my body is telling me the that few more months are not worth the price, not this price.
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scale73
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I did, thank you. Yet, I trust my doctor and if I had to try something it will be with his help : there are meds for some mutations that were identified (via a clinical study), clearly more risky than ADT.
Some of us, as we get very old, have a similar issue. Silly as it sounds, this is the time that all the little niceties of life become a major way of expressing a lasting love. I hope that makes sense.
My husband was 50 when he was diagnosed, and I was 32. It was three days before our wedding when we got the phone call.
From our experience, it’s basically a mourning process for sex. Denial, anger, grief, the whole 9 yards. I have noticed that the well-meaning people on here can be somewhat dismissive with this topic, but I wish it was talked about more up front. Yes, other things in a relationship become more meaningful and fill in the gaps, but it is a real loss and I think it should be acknowledged as one.
For what it’s worth, we still have sex. And it’s still pleasurable, but different and infrequent. If you want to maintain sexual function as much as possible start asap with pumps, cialis, the shots, etc. You can still enjoy that part of your life if you put in the effort, but the attraction will probably be more emotional than physical. Which is really nice in its own way.
When he went off ADT it took 14 months before his T started recovering. With being off ADT for 2 years, that side of things did not recover much. Even if you went off of ADT now, and let the cancer progress, you may not recover that desire.
I’m sorry this is happening. From my point of view, I just want my husband to live for as long as possible, and sex/desire seems a small price to pay for more time with him. He may disagree some days, but I’m grateful he chooses treatment.
Scale, I feel some of your pain, but I was 65 when I started on ADT, so I know my case is not the same as yours.
***Note to the squeamish*** I’m going to be pretty frank about my sex life, so you makes your choices if you choose to read further.
When I was diagnosed and given 18-24months to live, my wife (of 40 years at that time) were going through a difficult time in our marriage. When the dr said that I would be chemically castrated by the treatment I was unhappy, but we were no longer very interested in each other, so it wasn’t as great of a loss as it might have been.
After a couple of months on ADT I totally lost interest in sex and went through a grieving process about that part of my life, my relationship, and my manhood ending. A few months later I got my act together and started working on LIVING until I died. I exercised, lost weight and started courting my wife like we were in a new relationship, (you don’t even want to imagine the badddd karaoke).
Eventually she started to warm up to me and I hoped that we could reconnect. One of our repair tools that we came up with was to make a rule that if either of us needed the other we could ask for a “naked lay down” (pretty creative name- I should probably trademark it). The skin to skin contact was great. It’s really hard to stay pissed when you are snuggling naked.
We added in some extra cuddling, and I worked on improving my skills at pleasuring her. We started making love every day (it was more than just having sex). I felt awesome just being able to please her, and I found that I enjoyed our modified sex only slightly less than she did.
About 4 months, and several more months since starting on ADT, we got a nice surprise. One morning we were cuddling and schwing. Only a chubby, but something. We stepped up our game, I bought a pump, and our frequency increased. My errections were inconsistent, but they were frequently enough for penetration and/or oral sex. I got a prescription for viagra, and later for trimix, and it was off to the races.
Now, our sex life is awesome! In the 12 months following my reserrection we made love almost 400 times. We still make love almost everyday. My libido is nonexistent except for with my wife, but she still lights my fire.
There are times when I worry that my little guy is done. It can be depressing to see him all shrunken up, and for him to just lay there when in the past the very thought of so much sex would have caused him to stand up and prepare to charge ahead. Thankfully, he still wakes up at least a couple of times a week. In the meantime I get to hold my wife’s naked body, flirt with her shamelessly, and make love to her several times a week.
I may be an anomaly, but I’ve never been that exceptional sexually. For me the keys were the increased intimacy and touch, keeping what erectile tissue’s I still had with the pump and the meds, pleasing her whether I had an erection or not, and getting out of my own head by letting go of what I used to be able to do.
My advice, don’t worry about your manhood, get naked and touch, play around with your partner sexually, and please her/him, whether your libido tells you to or not. The loving is more important than the sex, but the sex can be frick’n awesome as well.
Regarding ADT, the beginning of the treatment is very tough. It is such a great change for your body. But then the body adapts. Hot flushes in particular get smaller.
ADT does not mean no sex but a different and uncertain sex. Preliminaries are the same and you can feel the same hormonal storm from kissing, caring and more. Erection sometimes come but you are never sure if it will last long enough. So if both partners accept this uncertainty, physical relation can bring to the couple the same as before. Intensity and love is still there.
My wife sometimes reach orgasm. I can’t anymore but feel very satisfied of the fusion of our bodies.
Regarding life expectancy, MD always tend to give a worst case scenario. They don’t want the family to attack them. On this site many were told 2 years and are still alive today. Yes some have fallen also. Do what needs to be done and the 2 years can be more.
As with ADT it takes some time to accept and adapt to our future death. But after a while you adapt. You set your goals, prepare for the future of your family, define your QOL. Everyone will die. The others just forgot it. We are fully conscious
I understand your feelings. Been there. I tied a great deal of my self worth to my libido. ADT took it from me and I was angry. Sex and desire can be both glue and acid in life. I think real love is tied to neither. It is a knowing that transcends the physical, a depth that endures the hardest of hardship and a source of comfort on the darkest of days. The physical urge may fade with ADT, but love is exempt. It endures. Your ability to love and nurture are unaffected unless you dwell on what you don't have.
I have been on ADT for a total of 21 months. The loss of libido is definitely something that men are not counseled on before they start this treatment. Sexual function in general is also not part of the majority of the pre-treatment counseling that happens in prostate cancer. What you are describing, we all stumbled into and try to retrograde out of, without a chance of success.
…but there are two types of arousal. There is mental and visceral libido. I find that mentally I’m still very much attracted to my wife of 40 years, but I don’t have that sense in my gut, that urge and visceral emotion. And yes, that is devastating. It robs you of the basic enjoyment that we have in life, especially between two committed people. It’s a very big loss and there’s no way to sugarcoat that. But try to latch onto, grow and appreciate the mental arousal that is still there. Try to take some pleasure in that feeling. Nurture it…
But your case is unique and it’s an obvious one where the only option to hormone therapy is a quick progression of the disease and potential early death. I read a great book in psychology that says we have three forces in our brain that deal with traumatic situation. We have managers, firemen and exiles. The managers are the logical voices in our head to tell us the pros and cons of our actions and try to reason our way out of trauma. The fireman we are all aware of and they just want to break down the doors, ripped open the walls, find and extinguish the fire at all cost. And the exiles are the voices that we hear in this text and in your plea. They are the ones that cry out why me, why now and when will it end.
Try to identify each one of those three forces in your mind. Let the exiles go. Keep the firemen outside the house unless it’s absolutely necessary. As much as possible let the managers speak. Let them drive your decisions. Allow them to lead you down the path that will give you the most time with your loved ones. Everything else is second to time. Every hour is precious. Every day is irreplaceable. Everything else comes second; buy as much time as you can. Spend it like a currency. Purchase with it what you most treasured. Don’t Skrimp.
I wish you the very best. Let us know how you progress. We are with your brother, we all know exactly how you feel. Rick.
Hello Scale73, try and see if your doctor will switch you to Orgovyx. I’ve been on it for 9 months so far started when I was 49 years old, now 50. One hot flash a day and it isn’t bad. Libido is non existing, a cruel process of the treatment and a means to slow down the pc.
I have young kids and a great wife as well. Do all you can to stay busy, keep active, try and exercise and keep a positive mind set.
ADT can work much longer than your doctors prognosis of 15 months. Also secondary hormone therapy drugs are available once your PSA starts rising.
All in all you are you and not the averages. Eat well, stay in shape, get appropriate sleep daily, and keep a positive mindset.
Attraction has little to do with libido... Use it or loose it ! 18 months into ADT ( Lupron and Zytiga) we are still having sex 2-3 times per week. No ejaculations but lots of orgasms'. No shrinkage, but erections are less reliable. No use of pump. 20 mg of Cialis day of. I drink 3 glasses of water before sex to heighten sensation . I vape some Sativa or use gummies 30 minutes prior (also helps with sensation and arousal).
It is a mental mindset, don't let anyone tell you your sex life is over, it may however be different. Push through your lack of Libido and give your partner pleasure, she reciprocates and you two are off to the races. How can you not have fun getting naked with someone you love.
You're young it is clear is very unlikely I get two years (crystal ball - please get me the Lotto numbers). You have a wife and young children. Do you know how many young men were Killed during the Normandy invasion......... I swear I never heard anyone of them complaining. They took it and saved this nation from speaking German. Now calm down you're not just crazy.... You're letting this Pca rule your life. I've been fighting those lousy little buggers for 22 years with the last 15 in ADT............ I'm 86 years old and I'll make you a wager......... you'll make it to 85,,,,,,,,,,,,,,bet on?
I'll be 85 next week and have been kicking his ass for 26 years. After prostate removal I was told that I had the aggressive type and worst case scenario 5 years to live. Long story short I'm on zytiga and go for blood tests every month then throw him in the closet and forget about him until the next appointment.
I couldn't tolerate my very first and only Lupron (ADT) dose because the low/zero testosterone made my existing, but semi-manageable, depression off the charts, including suicidal ideation - every day. The clinic would not give me another injection since I have already been declared treatment resistant, i.e. no existing med would provide much, or any, and in some cases worse help. The really unfortunate part was that my "three month" dose actually gave me the side effect for 11 months. And, SOC would not allow shots to replace my T. It sucked to be honest. I didn't think I would manage it. I didn't notice the loss of libido as much since the removal of my prostate without nerve sparing effectively killed the possibility of sex anyway.
Good luck in finding a way to have your cake and eat it too. ADT has many side effects and they are all different man to man.
You either have ADT or you have cancer, your choice. Nobody can tell you how much time you have left. I've seen men here claiming to have lived with it for 20 years. OTOH, you might be dead in a month. No one knows the answer to that.
You oncologist can advise about either intermittent ADT or a vacation, depending on the severity of all your symptoms.
For me (and everyone is different), the fact I no longer have any sexual desire is first of all weird, but second of all, limits the issues I have with impotence.
Finally, I didn't read everything you wrote but a urologist can prescribe the trimix injection that might work for you. Doesn't really work for me but it's really great when it does.
ADT and the resulting low testosterone and loss of libido (just some of the effects) can't be reversed....as it is the low T that causes it...and that is exactly what ADT is supposed to do. I used Orgovyx for ADT (daily pill)...and the one benefit is that my T came roaring back in weeks when it was discontinued....verses the injectables used for ADT. I am sorry you are facing this at such a young age. Look into the pill option (manufacturer has an assistance program for cost). Exercise also helps fight effects a bit. I wish you well on your journey.
Also there's a blog called Life on ADT with a lot of good info. Should be easy t find on Google but if any problem pm me and I will send you the address.
That is really a tough break at such a young age. Personally I have found a little relief in getting rid of testosterone. I no longer go nuts any time a women shows some skin. I felt I was always fighting with my sex drive. Without testosterone I feel more peaceful and kinder. I have never loved my wife more. Fortunately sex was never very important to her. One other benefit of Lupron/abiraterone is that I am no longer bald. My suggestion is that you do some weight lifting. You won’t get a lot stronger but you maintain what you have.
I too am older than you (66), but that does not really matter. Someone told me to think of the loss of libido as a freeing experience. It is extremely difficult to get your head around the meaning of that, and it is impossible to do so on a 7/24 basis, but once you begin to look at the situation that way, it can be quite helpful. I wish you the best.
I'd like to thank all for sharing, it has been great help and I'll answer more when I have time.
I realize I wasn't clear, doctor never gave me 15 months - I said it as it comes from few statistics : my rare cancer is very aggressive, median time to castration resistance is 9-10 months.. if it works - yeeeeh rare cancer harder to cure - I do know some people have gotten two/three years, still it sucks. Also, I get 1 injection per month + daily pill, I just got the first and the feeling was unbearable. It is not only the sex that since a few years - since the kids - isn't great (let's be honest), but the physical attraction was so important to me, even now.
A few days it still sucks but I start to think yes, it may be worth a try. I change my diet, started to train, and spent time with kids and wife, trying to think how much more I can do with respect to what I was doing during the 7 months of chemo.
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