I know that no one, like NO ONE, actually wants to be on ADT. There are a lot of downsides to it, and complaints about the fatigue, lack of sex drive, etc. are a common theme on this forum.
I'm about a year out now from starting on Zoladex shots (a drug that works in the same way as Lupron), and I wanted to post about what I found to be some actual GOOD things about being on this stuff:
#1 - I'M NOT DEAD: Ok this is the most obvious one. When I got my diagnosis in October of 2022, I thought I was a dead man walking. I was metastatic with at least 13 tumors (including a massive 6cm primary and 5 bone mets), and my sister had died in '21 from metastasic cervical cancer with only 3 mets. Debilitating radiation, chemo treatments, and an immunotherapy clinical trial barely slowed the cancer down for her, and she was taken from us far too soon.
In my case though, after starting ADT on November 25th with a PSA of 104, by January 14th my PSA was a mere 1.4. I felt the lymph node met popping out on my left groin melt away after just over 3 weeks, with those inside my body probably reducing similarly as well. Eventually Darolutamide and Taxotere chemo would be added to bring that PSA down to 0.0, but in doing the obvious math the ADT clearly did all the heavy lifting.
Bottom line, most of us are extremely fortunate to have a cancer that responds well to ADT. ADT is like the ultimate cheat code in a really shitty video game, where the final boss is unbeatable and you only have one life.
#2 - I get along better with people: I've generally been pretty on edge for most of my adult life, and I'd chalked it up to the stress of working in emergency services for 25 years. When my cancer hit and I had my testosterone checked for the first time ever, it read at 800+ ng/dl at age 48. This is in the high range for men of any age, and it explained a lot. Since it's been brought down to rock bottom by ADT, I've found myself to be much...nicer. I can empathize with people better, and deal with them on a more "feminine" level, for lack of a better term. For sure I get the occasional mood swings and sad day, but this is balanced out by being much easier to get along with (especially with my family).
#3: Lower sex drive. While most men might see this as a negative, I can say it's changed my marriage for the better. When I married Mrs. 32Percenter my high-T raging libido was much more intense than hers, and this disparity only grew over 11 years of child-raising and familiarity. As you can imagine this led to problems - problems that fast became irrelevant thanks to ADT bringing my drive down closer to Mrs. 32Percenter's current level. We're now intimate a couple times a month, and it's fun and light rather than aggressive as in the past, where getting off was usually my primary goal (and I can still do it without pills for now, knock on wood).
Then there's that old stat about men thinking about sex about every 3 seconds. I have to say that since ADT this isn't a thing, and much of my brainpower and concentration has been freed up to focus on other important things.
#4: Still not dead! Yeah I know I mentioned this before, but I think it's crucial enough that it should be mentioned on a second go.
#5 - Mellowing out on physical stressors: Having the testosterone level of a teen in a body approaching 50 years of age is like putting a Ferrari engine in an old K-car, with similar results. I was mistreating my body well into my 40s, doing things like obstacle course races, pushing too much weight in the gym, skipping out on sleep too often, and working night shifts alongside all the younger folks I work with. After a year of ADT, if I do ANY of those things my body reminds me that it was a very bad idea, and I have to force myself to take it easier and pull back. Recovery from physical stress just isn't the same, but this isn't necessarily a bad thing - without the moderation brakes on it's easy to wreck your joints and your adrenals (my first bone scan was a rude awakening of how many of my joints are almost toast at only the mid-life point).
Don't get me wrong, despite this list, if I can ever get off these drugs I'd do it without a second's hesitation. But I have to say that in the big picture everything isn't ALL bad. I also wanted to put this post together to show anyone about to go on ADT that there may be some positives in the experience for them as well. Especially the "not dying" part!
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32Percenter
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Less body hair, which is in fashion. No body odor which is always a plus. I actually lose weight on ADT although that’s undoubtedly due to loss of muscle mass. And I think I grow more hair on my head, although that could be my imagination.
NO ADT drugs for me, just old fashion surgical castration.
1st - fastest 10 pound weight loss in my life. Check for Testicular Cancer was clear and Pathologist noted that *10 pounds of BALLS can fit in a 5 pound sack*
2nd - Finally able to hit those high notes.
3rd - 100 mile bicycle rides are soooo much more comfortable
Bravo. I have also written about the pluses of ADT as well but generally it doesn't seem to be a popular view.
I also noticed that propaganda from health agencies typically focus on maintaining the life we had before.
And the worst case expresses itself on this forum in people making decisions to go on a holiday for a while. Choosing so-called quality of life over life itself. (Then you might end up with neither! 🙁)
In any of the prostate cancer association or agency websites that I have ever visited when I want a dose of boring feel-good propaganda and yesterday's news, I have never seen your excellent point of view ever expressed.
Couple of questions and points:
1. Are you doing some heavy duty exercise like everyone around here recommends?
2. And as for your feminine side have you read any of the things here or elsewhere on the whole question of estradiol? Which is the female estrogen hormone that men also have some of of course! Which is also suppressed when testosterone is suppressed by our beloved ADT! (I am researching the whole idea about add-back.)
3. You seem to be doing an excellent job of managing your therapy and living under new circumstances. I found this to be a whole job in itself and difficult to do. And I noticed on forums like this that people need coaching but they don't seem to get it and it's a difficult thing to come to a good understanding of what we should do.
For example exercises really important but it's much more important than any healthcare provider ever suggested to me. And even when they did it's like "just do a little exercise it can't hurt".
I understand that palliative care is important but I don't want that yet. And it's also premature.
It's like there's a big gap in the middle of healthcare for men with prostate cancer, between prescriptions for drugs and palliative care and death - which you seem to have navigated well. Maybe we could call it "coaching".
Coaching that helps extend the middle. Before palliative care. Let's push off palliative care as long as possible please.
And as well as good modern therapies, exercise could make a huge difference!
1. I've been doing high-intensity resistance exercise consistently for the past 28 years. My training style is one-set-to-failure workouts in a similar fashion to the Body By Science book, although I don't find one workout a week to be effective for my goals - I do 2 sessions per week, one lower body and one upper body. I also use more volume than Dr. McGuff "prescribes".
This is something I've always deemed to be important, even before cancer, mostly for my work and health reasons. During chemo I continued too (albeit stopping the sets before failure).
I haven't actually lost much strength in the past year, believe it or not. I've actually made a few observations about ADT and resistance training that I want to dedicate a whole thread to when I have the time.
I do cardio too of course. I aim for 5 HIIT sessions a week in addition to the 2 resistance training ones. I think this is less important than a good resistance training regimen on ADT, but it does help with energy levels, mood, and probably cardiac issues that can arise from longer-term ADT.
2. I've been looking into estrogen replacement as a potential therapy down the road, depending on bone degeneration (if any). I'm going to bug my MO for a baseline DEXA scan next time I see her this month, and pay for it out of pocket if I don't get one through the system.
It's been weird having to switch my view on estrogen as a positive, as I've been trying to minimize estrogen in my body all my life, watching out for environmental estrogens, etc. I've literally spent the last 20 years avoiding soy anything.
3. Agreed that "palliative" care should be seen as a last resort, and not a state of being or lifestyle. I look at the SEs of ADT this way: Before ADT if I was fatigued, or moody, or achey from exercise, I still went about my day and took my kid to school, went to work, mowed the lawn, etc and life didn't stop. I take the same view of ADT sides, life goes on despite these nuisance sides making themselves felt.
32P - Thanks so much for the excellent reply about ADT, exercise and more.
What you've shared about your own exercise practices is very helpful. In my own situation, I'm now incorporating a lot of exercise and my daily and weekly routine (I'm up to 6K brisk walk with two 5 lb hand weights four or five times a week, plus resistance and weights at home daily.)
But it's been a lot of work to figure exercise out in terms of PCa.
If one hasn't done exercise the way you have for years, it's a big thing to learn how to balance aerobic and resistance and maybe isometric too. And not just to be strong and healthy with a good QOL, but specifically for its impact on survival. (Like many with PCa I have bone mets, in my case in my spine, which complicates some kinds of exercise.)
Here are detailed notes recently posted as a reply on the subject of Estradiol:
Given the chemical causes of male pattern baldness I would think that all of us should notice a slow down in hair loss if not an actual increase in hair growth……
It’s mixed for me. The negative part is the side affects such as neuropathy in my feet and legs. I suffer from depression and take medication for it and anxiety. I get up in the mornings with a bad headache. My joints hurt more. I hit a wall mid afternoon with fatigue. I have zero sex drive, that makes me sad!
The positive: I don’t have a sex drive. No time or energy wasted on such things. It’s liberating! I live more in the moment. I do have mood swings at times but I usually speak kinder and gentler. ADT is a real motivator to get to the gym. Most of all, I’ve gotten much more serious about my faith and spiritual life. I’ve surrendered to Christ. I have peace, love and no fear of the future.
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