How has ADT affected your enthusiasm & motivation for life?

Posted by scary1 @scary1, 12 hours ago

My 61 year old husband (I'm 55) has been on ADT - Nubeqa and Orgovyx - for over three months and will likely take both for two years for high-risk prostate cancer (Gleason 9, cribriform, visibly contained within the prostate per scans), and I'm trying to better understand what other couples have experienced.
For those of you who have been on ADT, how has it affected your passion, enthusiasm, and motivation for life? My question isn’t about libido, but more about hobbies, excitement about future plans, ambition, or simply enjoying everyday conversations and activities.
Did you feel emotionally flat and less connected with loved ones and life? If so, did those feelings improve over time or after ADT ended?
My husband and I are a team for life; we still play (shorter) tennis sessions (we’ve played together for 30 years). We still laugh, but I sense an indifference and apathy that I’ve never experienced before. He's also less patient. Of course, this is to be expected, but I guess I’m asking: how did you feel differently toward your significant other? Clearly, testosterone is there for a reason, hence all the “low T” ads.
My husband says other than hot flashes and fatigue, he feels almost normal, but I see a difference. I don't want to make this about me, and I know this medical journey won't fracture us, but it’s also hard feeling our relationship off-kilter.
Thank you.

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I don't have an answer to your specific question because my PCa treatment did not require ADT. But I know that PCa has changed me and thus has change my relationship with my spouse. Many other things over the decades have change both of us in ways big and small, in ways good and bad and thus have changed our relationship. Maybe the relationship is better in some ways and maybe worse in others. But we are in it together for the long haul (42 year and counting) and my relationship is the most precious thing in my life. Sorry for responding but not answering your question. I do wish you and your spouse the best on your journey!

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Profile picture for jeff1963 @jeff1963

I don't have an answer to your specific question because my PCa treatment did not require ADT. But I know that PCa has changed me and thus has change my relationship with my spouse. Many other things over the decades have change both of us in ways big and small, in ways good and bad and thus have changed our relationship. Maybe the relationship is better in some ways and maybe worse in others. But we are in it together for the long haul (42 year and counting) and my relationship is the most precious thing in my life. Sorry for responding but not answering your question. I do wish you and your spouse the best on your journey!

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@jeff1963 Thanks for responding. I think I just needed to type out my feelings tonight. My husband has always said I am his everything, and I'm very lucky and grateful. Sometimes my heart simply feels heavy with worry. I relate to your explanations, and your response is comforting. And 42 years is impressive and wonderful - cheers to life partners!

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I'm also 61. I've been on ADT for close to five years. Almost every morning I wake up excited to start another day (and grateful that I'm actually here to see it).

I had a lot of mood swings my first year on ADT, but then things stabilised. I'm definitely different since my 2021 stage 4 prostate cancer diagnosis, but at the core, I'm still me, and still deeply in love with my partner of 39 years, who had my back through some pretty difficult stuff.

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I am wife of high risk patient and my husband is on the same 2 drugs.

He is 70 years old and I did not notice any changes in him (so far, he is about 2 months on Orgovyx and about a month of Nubeqa). He does not even have hot flashes 🧿, &knock the wood. He still works full time and also has some "gigs" on the side and his job is keeping him very active and engaged. I did not notice any changes in energy level either and he is exercising every day too.

He does not like to think about cancer in general, so I think it is very helpful. I often ask him how is he doing and he always looks at me with surprise and says ; "I feel great - why ??? What did you read now ?" 😋 Like I maybe read something and am now checking if he is OK lol , he is so funny in that way lol.

Saying all of that, it is a well known fact that ADT effects mood and energy level and it can go from "no effect" to "major depression" effect and all levels in between. It seems that your husband is really very little effected , so little that only you can sense those subtle changes and maybe it could be of comfort to you 💗. Maybe the fact that he has aggressive cancer and that he has to deal with all this is effecting his mood more than ADT ? : ((( It is really much to deal with even without ADT : (((. I am not on ADT but I definitely changed since my husband was diagnosed 🥺. I am more subdued, have zero patience with people outside my immediate family, nothing is "like before" in my mind and my energy level is much less since so much energy goes to dealing with emotions of all kinds .

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I am 74, single been on ADT for 1 yr. This is what it has done to me: I am not as confident, I am afraid to travel now..I dont have hardly any interst in sex-in fact I somehow feel betrayed by sex. I have gained 18 pounds ( some is muscle because I lift wts and work out more-I now weigh 235 when pre PC era I weight 215-220)...I dont necessarily feel sad but I do feel my life is on hold. I have hot flashes regulalry and dont sleep as well ---oh fatigue..lots of fatigue.....plus deep fear of recurrence and having to fight this for the rest of my life. Prostate cancer and all the treatment wounds psychologically and physically. But I carry on and grateful there are treatment options and now have a much more profound sympathy for people with cancer...I lost twin sister to cancer, Older sister and my dad..so I have seen it but now it ( cancer) is an intimate part of me. I have Gleason 8 N1..one more yr of ADt..and every 3 months PSA worry but so far I am <.02...otherwise doing ok.

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Profile picture for xahnegrey40 @xahnegrey40

I am 74, single been on ADT for 1 yr. This is what it has done to me: I am not as confident, I am afraid to travel now..I dont have hardly any interst in sex-in fact I somehow feel betrayed by sex. I have gained 18 pounds ( some is muscle because I lift wts and work out more-I now weigh 235 when pre PC era I weight 215-220)...I dont necessarily feel sad but I do feel my life is on hold. I have hot flashes regulalry and dont sleep as well ---oh fatigue..lots of fatigue.....plus deep fear of recurrence and having to fight this for the rest of my life. Prostate cancer and all the treatment wounds psychologically and physically. But I carry on and grateful there are treatment options and now have a much more profound sympathy for people with cancer...I lost twin sister to cancer, Older sister and my dad..so I have seen it but now it ( cancer) is an intimate part of me. I have Gleason 8 N1..one more yr of ADt..and every 3 months PSA worry but so far I am <.02...otherwise doing ok.

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@xahnegrey40 I'm sorry about the feeling that your life is on hold. 🙁

I honestly don't know how I'd cope with this cancer if I lived by myself. You're probably doing **much** better than I would: I might have just climbed right up inside my head and stayed there.

In my case, I feel like life is going on like a toboggan down an icy hill, whether I feel like pausing or not, so I might as well hold on for the ride and try to keep up with all the changes in my spouse's, kids', bonus kids', and now, grandkid's lives.

Could I use a break sometimes? Absolutely — the pace is exhausting. But it does keep me engaged with life at a time when it would have been very easy just to give up.

There must be a happy median somewhere between our two situations.

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I have been on ADT for about fourteen months now and, while I have not noticed any significant morphological changes - I don’t experience hot flashes or overwhelming fatigue - my partner of twelve years tells me that I have “changed” and not in a good way. I am a bit more caustic now and short-tempered and my ability to focus has diminished as I seem unable to prioritize life tasks.
At her urging, I sought help from a psychiatrist but even that didn’t prevent us from separating for two weeks in early June (we have since reconciled). Some of my malaise was due to my loss of athletic prowess. I am a short track ice speed skater who also races bicycles during the off season and, at sixty-eight, it appeared that I would need to re-evaluate my public persona due to my inability to perform at the high level to which I was accustomed.
Libido? I still have the interest and desire - I have always enjoyed the company of women, perhaps to excess because, even while on ADT, the attention of other women led to our brief separation. Previously I might have drawn a firm boundary between me and the other women but I had become insecure about my sexuality and, although I didn’t have an affair, I didn’t discourage the attention which, understandably, infuriated my partner.
Therapy has helped us overcome this rough patch plus, through some miracle I still don’t understand, I have regained my cycling ability and competed in an international endurance race on June 13th where I finished 407 out of 788 - which is good for a senior citizen.

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That’s a good question. A lot of it depends on his personality. If he’s not outgoing, already has a negative outlook, and doesn’t have much sense of humor — no, ADT isn’t going to suddenly make him happy. That’s not how it works.
But here’s the thing with ADT — you have to accept it for what it is. Acceptance is a huge part of this. Staying stuck in doom and gloom doesn’t help anything. ADT changes your emotions, but it doesn’t change who you are underneath.
I remember my oncologist telling me, “You’re going to get more emotional, like crying when you see a puppy.” I told him I already do that 😂
Yes, you’ll probably have some slump days. And the rest of the time, you push yourself. It’s not easy, but you can do it. It’s a lot easier to just do nothing.
I have metastatic prostate cancer, Gleason 9, it’s spread throughout my body. It’s under control with meds, and I’ve managed the side effects with more meds. It’s only been a year, and I’m grateful I’m still on the top side of the grass.
There’s a lot you can do. Accept that there will be bad days. Walking helps. Weight training really helps. Eating well matters a lot. And knowing you’ve got a team behind you — family, doctors, friends, even the furry friends— that won’t give up on you, so you don’t give up on them either.
Hang in there, take it one day at a time. And remember, this forum is here for you. 🙂

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Profile picture for zzotte @zzotte

That’s a good question. A lot of it depends on his personality. If he’s not outgoing, already has a negative outlook, and doesn’t have much sense of humor — no, ADT isn’t going to suddenly make him happy. That’s not how it works.
But here’s the thing with ADT — you have to accept it for what it is. Acceptance is a huge part of this. Staying stuck in doom and gloom doesn’t help anything. ADT changes your emotions, but it doesn’t change who you are underneath.
I remember my oncologist telling me, “You’re going to get more emotional, like crying when you see a puppy.” I told him I already do that 😂
Yes, you’ll probably have some slump days. And the rest of the time, you push yourself. It’s not easy, but you can do it. It’s a lot easier to just do nothing.
I have metastatic prostate cancer, Gleason 9, it’s spread throughout my body. It’s under control with meds, and I’ve managed the side effects with more meds. It’s only been a year, and I’m grateful I’m still on the top side of the grass.
There’s a lot you can do. Accept that there will be bad days. Walking helps. Weight training really helps. Eating well matters a lot. And knowing you’ve got a team behind you — family, doctors, friends, even the furry friends— that won’t give up on you, so you don’t give up on them either.
Hang in there, take it one day at a time. And remember, this forum is here for you. 🙂

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@zzotte Good points. I'm not outgoing — more of a sociable introvert who needs a lot of alone time to recharge. But while I don't engage with what's now called "toxic positivity" (pretend you're happy no matter what), I am grateful for all the things in my life and stubborn about hanging on to them, so I also have the motivation to push through any ADT hickups.

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(I had two 3-month injections of Eligard; the Eligard stayed in my system a total of 9 months.)

When I was initially diagnosed with prostate cancer in 2012, my wife was quite upset. She said she “couldn’t bear the thought of cancer being in me.” But, I’m the more pragmatic, logical (retired computer scientist) type, and was able to show her (based on the data), that there really wasn’t anything to worry about, many treatments were available, and that I would carefully evaluate and analyze all aspects of this situation and make a decision that was best for us.

In that process, much of my time has been spent maintaining normalcy for her and myself, and insulating her from the continuous grind - physical and mental - of test-after-test-after-test. (That effort exhibited itself a few weeks ago when I mentioned to my wife about it being the 5th anniversary since the end of my 28 proton radiation treatments. She replied “yeah” and went back to watching her TV show.(!) That was an appropriate response, given my purposeful efforts to maintain normalcy in our relationship during this time.)

During my hormone therapy, I asked my wife if she had noticed any emotional changes in me: moodiness, crankiness, aggressiveness, anger, etc. She said that she hadn’t noticed any. (But, she did joke that I started watching too much Hallmark Channel on TV!)

This diagnosis did not adversely affect my passion, enthusiasm, and motivation for life in any way. In fact, it motivated me to be more active, eat more healthily, stay occupied, and continue with all I had been doing. (When I was diagnosed with prostate cancer, I had recently been elected vice mayor of my city; later I would be elected mayor. Nothing around me changed with my diagnosis.)

The things you’re expressing that he’s going through are all due to low testosterone. Think about your own menopausal years. What it took you years to get to and through, he was put fully into in a few weeks. “Male menopause” is what it’s called. He’s feeling 15 years older practically overnight; yes, that might cause him to be emotionally flat, less connected, shorter tennis sessions, indifference, apathy, patience, hot flashes, fatigue, ….feelings in general. (Again, think menopause.)

His feelings aren’t likely to improve until the ADT is out of his system and his T levels return.

However, there is a solution….

We often hear about the physical benefits of exercise to minimize the physical side-effects of hormone therapy. But, there are also mental health benefits as well —> Exercise turns on many types of switches in the parts of the brain that puts us in a better mood. It reduces stress, anxiety, depression, catastrophizing, and more.

A short video with Drs. Sholz and Moyad talking about exercise and hormone therapy: https://m.youtube.com/watch

Incorporating a resistance-training exercise program is a necessary part of the routine to minimize the potential physical/mental side-effects of hormone therapy.

It will improve the situation for him (and you).
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