How has ADT affected your enthusiasm & motivation for life?

Posted by scary1 @scary1, 2 days 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.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Profile picture for scary1 @scary1

@zzotte
I'm happy to hear you are doing well. Positivity and gratitude are vital in the journey - and I know this, but sometimes my energy collapses. My husband has to be forced to walk and exercise, but I can tell he feels better when he does move. His eating is not always the best - sausage and hideous processed meats are his dream foods.
It's a learning curve, but I really appreciate this forum. Take care!

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@scary1 have you talked to his oncologist about it? Does he take multivitamins specially D and K2? I this point we need all the help we can get

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Profile picture for surftohealth88 @surftohealth88

@northoftheborder

Well - we don't know !!! 😉 Maybe you have fancy shorts and Diesel t-shirt now ! lol
Maybe it is Scotch & Soda cargo pants !??? ; ))) Perhaps Ferragamo sunglasses adorn your summer outfit ; ) ?

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@surftohealth88 One can dream. But no, I definitely buy my clothes at Mark's (formerly Mark's Work Wearhouse), not Dolce & Gabbana.

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Profile picture for scary1 @scary1

@brianjarvis
Thank you for the positive post. It sounds as though you naturally seize the day and make the most of life. I mentioned in a previous post that I was diagnosed with stage 3 cancer in 2020, and our world fell apart as I navigated treatments and doctors. I handle all research, appointments, driving to appointments, and logistics - my husband would probably just call it a day and drink Guinness if he were alone. He always swore he'd never go to a doctor past 60, but here we are.
While my husband loves tennis, he hates walking or lifting weights. I've been nagging him (sadly, yes) to do light weights. I know it will make him feel so much better.
My philosophy is that life is tough at times but life is also beautiful. I don't want to crawl in a chair and watch life pass us by because of ADT and PC.
I plan to use your post and video to support my pro-exercise campaign. Thank you!

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@scary1 I think that my path being different from most helped me through this journey.

I started getting annual PSA tests in 2000 (at 45y), and watched my PSA slowly rise year after year. So, it wasn’t a big shock to me in 2012 (at 56y), that my urologist told me that my biopsy showed low-grade, localized prostate cancer. No reason to panic. I took it in stride and then morphed into my investigative mode. That gave me much time - 9 years - until it became medically-necessary for me to make a treatment decision in 2021 (at 65y).

I think that “going into investigative mode” is my natural coping mechanism —> when my father died in 1990, I immersed myself into my role as executor; when my mother died in 2016, again, I immersed myself into my role as executor. That type of mental distraction apparently helps me navigate through and beyond what would otherwise be difficult paths.

(My father never went to the doctor. At 68y (Nov 1989) he had what we all thought was a bad cough or flu; it was advanced lung cancer. He died 6 months later. My mother lived until she was 96y.)

I do all my own research, appointments, and logistics as well. My wife only went to one of my urology appointments, only one of my medical oncologist appointments, and only came to my radiation appointments on Fridays (when we discussed treatment status). I’m not complaining; I preferred to insulate her from all that.

But, she’s pleased (as am I, of course) that my prostate cancer treatment results have turned out very well.

Wishing you two the best results.

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1. I have NO enthusiasm.
2. I am 89.
3. I quit Lupron (after only two shots) in 2022.
4. I STILL have not regained enough strength to even walk safely
around the block.
5. I realize it's my age.
6. After reading about how many of you are suffering, I have NO self-pity.

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Approaching age 75 and now 10 months into a planned 15 months ADT (3 months on Lupron followed by Orgovyx), I feel like a hollowed out shell of the man I was. The fatigue and hot flashes are constant reminders of the medication, and the generalized weakness and musculoskeletal pain make me feel like I have aged 10 years over the last 10 months. The negative impact on my libido (which is null at this point) and associated ED (it seems hardly worth the effort to engage in intimacy with my younger spouse) leave us both struggling to maintain the closeness we once shared. I am counting the days until ADT is considered completed, praying that my cancer remains controlled even after the meds are stopped, and hoping that my sexuality is restored, the weight I’ve gained melts away with continued exercise (I am doing Zumba, Pilates, cycling) and my breasts recede to their former size/shape. Ugh. Prostate cancer sucks in spite of the fact that it can be so well treated!

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Profile picture for madisonman0326 @madisonman0326

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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@madisonman0326

It seems that you have escaped the horrible side effects that I got from only 4-months of Lupron. At 15 months since my last 3-month shot I am just beginning to feel pain at a level I can bear. I wish you well and you need to pay more attention to your wife who has suffered as much as you have from the cancer.

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Profile picture for rbtsch1951 @rbtsch1951

Approaching age 75 and now 10 months into a planned 15 months ADT (3 months on Lupron followed by Orgovyx), I feel like a hollowed out shell of the man I was. The fatigue and hot flashes are constant reminders of the medication, and the generalized weakness and musculoskeletal pain make me feel like I have aged 10 years over the last 10 months. The negative impact on my libido (which is null at this point) and associated ED (it seems hardly worth the effort to engage in intimacy with my younger spouse) leave us both struggling to maintain the closeness we once shared. I am counting the days until ADT is considered completed, praying that my cancer remains controlled even after the meds are stopped, and hoping that my sexuality is restored, the weight I’ve gained melts away with continued exercise (I am doing Zumba, Pilates, cycling) and my breasts recede to their former size/shape. Ugh. Prostate cancer sucks in spite of the fact that it can be so well treated!

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@rbtsch1951

At age 83 I had to stop Lupron after just 4 months, or I thought I would die because the pain was so intense for 24 hours/day. It got even worse after stopping Lupron and only began to get better after about 14 months. Severe headaches, aching bones and muscles, muscle cramps, and of course the hot and cold flashes. Undetectable PSA but my testosterone has only recovered to 125. No libido or erections. I get checked again next week and would like to find out if there is a way to raise my testosterone to end the side effects.

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Profile picture for jimbo12 @jimbo12

1. I have NO enthusiasm.
2. I am 89.
3. I quit Lupron (after only two shots) in 2022.
4. I STILL have not regained enough strength to even walk safely
around the block.
5. I realize it's my age.
6. After reading about how many of you are suffering, I have NO self-pity.

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@jimbo12 You know, it's OK to feel sorry for yourself. Everyone in the world except one very unlucky person can point to someone else who's worse off, but that doesn't mean what you're experiencing doesn't matter.

Have geriatric medicine specialists made any suggestions? They can't make you 65 again, but perhaps they can find ways to help you enjoy the body and abilities that you have now. And 89 isn't too old for therapy or support groups, either.

Step one is considering that your life is still important and has value, regardless of your age, health, and physical abilities. Not going all blessing the sunrise and all that, but just saying "You know, maybe there is some honest joy there somewhere, if I just give it a chance."

Best of luck (and again, it's OK to feel down sometimes too.)

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First, I would like to compliment you on such a heartfelt, well-balanced, and objective offering in a situation that is anything BUT that. Your husband is a lucky man...we should all be so lucky, especially after very recent stories on this blog of men who share that their wives are angry with them for their lives changing due to his cancer. In other words, the wives "did" make it all about them, not their husbands or their relationships. So..."bravo" to you...you are a great wife!
I am personally not at a place where I need - and hopefully will never need - ADT in my post-prostatectomy life and recovery (14 months post-prostatectomy), but I can only state that I would never do ADT. You are quite literally messing with your brain...the hormonal control of your body...a "male" body...being given female-equivalent hormone treatment to suppress testosterone. Hot flashes and emotional lability are NOT supposed to be part of the male experience in life. Heck, I have felt the side effects of prednisone the couple of times that I have had it...you feel out of control, like something has taken over your body. I can't imagine what ADT makes you feel like and what it does to your body. And...
From what I read, ADT is not a permanent, lasting therapy...it does not "kill" any cancerous prostate cells, it just slows them down. And like anything, when you remove that blocker, you just open the flood gates for everything to slowly return. You just bought some time while being made to feel like an emotional woman to suppress your very-male prostate cancer. ADT only works for 1-3 years, then the cancer returns...it is inevitable. That will perhaps be my life and death choice if/when I ever come to it: will I decide to mess with my male brain and subject myself to hot flashes and horrible side effects of ADT to "live" another 1-3 years, knowing my cancer will return anyway, as soon as I stop to the ADT or it fails to keep working to suppress the cancer? Cancer always seems to win quite unfortunately. Good luck to you and your husband. YOU are his best therapy...I mean that wholeheartedly.

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Great question.

I've been on ADT now for 9 months, 9 more months to go. 28 Radiation completed a few months ago. Of the two treatments - radiation and ADT - ADT is the tough one. I tell my wife (44 years together) the same as your husband - that besides hot flashes and fatigue I feel the same - but I know that's not completely true; and we've been married 40 years now, so I know she knows that's not true.

My body is supposed to have testosterone - and ADT takes that away, so I KNOW my body is not acting as it should and that affects me physically and emotionally. It's hard enough going through this knowing you have cancer - and I can rationalize it by saying "it's one of the better, most treatable cancers to get if you're going to get cancer" - but in the end you still have cancer. Then when that thought isn't hitting me, I get constant reminders like those commercials appearing for various cancer drugs, or you read a news article about so-and-so having prostate cancer, etc. I'll be sitting there with my wife watching a baseball game, a show, or something on TV - and "prostate cancer" gets brought up. I then get flooded with thoughts of having cancer; mortality; "will my wife be OK if I pass" type thoughts. Stupid - as I know I'm going to get through this - but I think ADT increases those emotional responses. That has to impact a relationship.

Point being - ADT causes emotional and physical changes. If I've learned one thing in being married for 40 years - communication is always key. You feel the relationship is "off"? Talk about it. Sounds like you two are great together - so this is simply another "layer of life" you're dealing with now.

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