Am I the only one who doesn't care about testosterone?

Posted by bluegill @bluegill, Aug 2 9:16am

I'm just curious. None of my doctors ever brought it up. A few months ago I brought it up with my urologist (because many people here and in other groups think it is important), and he said "you don't want testosterone." And I agreed. My wife agrees.

I suppose if I were young and single, I might sing a different tune

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@tuckerp

No. I am a Mike. My wife always called me old Dan Tucker. But I think Phil had responded to my message about taking T. I agree with your comment that it could be dangerous to make assumptions. Whether the data is from the 1930's or not. I think its to risky. There is also very few urologists that I believe would consider it a safe practice. My Urologist said absolutely no way. My PA wasnt as worried.

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All good. If we've all had our "Phil" of this subthread, we can end it with a "Mike" drop. 🎤

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@northoftheborder

I hope I can some day, too. I'm young enough that if ADT and ARSI can just keep me alive for another 5–10 years, we might get to a point where the medical community knows whether it's safe to let my testosterone come back.

In the meantime, I manage the symptoms with light cardio and resistance training, healthy diet, and lots of testing (and I carry a small towel for awkward hot flushes in public). I had a full work-up at the university heart institute last year, and so far my heart is still strong (aside from minor issues that existed before the cancer) — the cardiologist even cleared me to shovel snow (!!!)

On the bright side, I don't have to shave every day any more. I use to have stubble again by 5:00 pm; now I can get away with 2–3 days before the stubble becomes visible. Always a silver lining ...

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That’s interesting. Hasn’t affected my facial hair. Mainly legs, arms, torso.

I’ve had to go on Faxiga to keep my glucose under control. Need to avoid insulin resistance at all costs!

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Yes, I've saved tons of money that I could have spent on electrolysis. I used to be embarrassed when I went to the beach, because I looked like a bear. Now I look normal (but still full beard).

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@bluegill

Yes, I've saved tons of money that I could have spent on electrolysis. I used to be embarrassed when I went to the beach, because I looked like a bear. Now I look normal (but still full beard).

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I used to like that I looked like a bear. Now one of my doctors said she's jealous that I don't have to shave my legs. (I took that in the spirit it was intended; if you can't laugh about it ...)

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kinda funny about hair growth. I barely have to shave my chin area once a week. Eye lashes finally started to come back. I just put the blame on the chemo, although that ended last october, hadn't made the connection about the lack of testosterone. I just keep learning new things on here. Best to all.

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My beard has only slightly returned. I miss having a full bear (neatly groomed). My eye brow's have not fully returned either. My eye lashes have come back - but not as long. I am grateful that none of the hair on my back returned. Testosterone does matter to those of us with Prostate Cancer. I an de novo stage 4 bone only. I used to be so muscular and powerful. Now I am meek and weak. I have also lost an inch of height , but the doctors says that is probably age. As long as ADT and Darolutamide keep me undetectable and my overall survival is longer it is a good trade off than death. My family needs me and I need them. I'm not done here so I keep fighting. I past 2 years as castrate sensitive with undetectable PSA. I'm looking forward to another 10+ years. Everybody exercise and life some weights. We are all living much longer with this disease, however, it is the ADT and ARSI's that cause our hearts to fail down the road. You have to work out as much as you handle.

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@wooldridgec

My beard has only slightly returned. I miss having a full bear (neatly groomed). My eye brow's have not fully returned either. My eye lashes have come back - but not as long. I am grateful that none of the hair on my back returned. Testosterone does matter to those of us with Prostate Cancer. I an de novo stage 4 bone only. I used to be so muscular and powerful. Now I am meek and weak. I have also lost an inch of height , but the doctors says that is probably age. As long as ADT and Darolutamide keep me undetectable and my overall survival is longer it is a good trade off than death. My family needs me and I need them. I'm not done here so I keep fighting. I past 2 years as castrate sensitive with undetectable PSA. I'm looking forward to another 10+ years. Everybody exercise and life some weights. We are all living much longer with this disease, however, it is the ADT and ARSI's that cause our hearts to fail down the road. You have to work out as much as you handle.

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Thanks for your post. It's all good advice. I'm going to suggest that moderate exercise might be better for us than strenuous. I've injured myself a few times already pushing too hard as I recovered from my cancer-related spinal injury. The secret seems to be making a habit of it: work out with light weights (or bands), but try to do it every day. Don't push yourself to run 20K, but if physically able, do walk or cycle everywhere you can.

Also, ask your family doctor about getting a full cardio workup. Since I'm on ADT and ARSI for life, I had one at a university heart institute (after an earlier test had mistakenly suggested I'd had a heart attack at some point in the past), and I got the green light for activities like snow shoveling. I also wear a smartwatch that displays my heart rate, and I make sure the rate doesn't go dangerously high during my activities (I aim for the moderate zone).

Same with diet — we don't need any extreme changes (unless you want them for other reasons), but we do need to make sure we eat a healthy, well-balanced diet, and that prepared foods, fast-food, and sweetened desserts things are special "sometimes" treats rather than every-day staples.

My spouse and I do a special "take-out night" every Friday: that way, we're looking forward to something instead of avoiding it. I know from past reading that positive reinforcement is far more effective than negative for all mammals, including us humans.

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As others have said, there's more to testosterone than sex....

Don't use my PCa as the basis for any decisions you may make, I'm only describing my experience, study of one.

Yes, the SEs of ADT and zero ADT that you can see and feel are well known and like the Bell Curve in statistics, most fit somewhere in the middle, fatigue, muscle and joint stiffness, genitalia shrinkage, weight gain. They are annoying but manageable in terms of living our lives.

Others will be outside the Bell curve, some to the right meaning the SEs are more severe and do impact living their lives.

As to your doctor's comment..."you don't want testosterone..." Not sure I agree with that completely. Yes, for years, decades, that has been the "rule of thumb, testosterone for men with PCa is bad. Yet...When I completed triplet therapy in May 2028, my T recovered to 135 in October, 460 in February 1019 and before I went back on treatment in April 2023, 608. So, that's a run of almost 4-1/2 years.

PSA did begin it's continuous rise in January 2022, from ,06 culminating in April 2023 with .7, the scan and subsequent SBRT. So, if we use that data point, it was still roughly 3-1/2 years my PCa stayed dormant even with a decent testosterone.

This time around, I stopped Orgovyx on 3 April 2024 in concert with me medical team, labs 90 days later show PSA .01, T 328. How long will this "vacation" last, who knows, My radiologist thinks 2-3 years, my oncologist is more cautious, one...

When I asked my medical team why I enjoyed such a long break when my T returned and by conventional wisdom so should have my PCa., given my risk factors - GS, GG, PSADT and PSAV, time to BCR, crickets...I've attached one theory, exercise...who knows,

I will say , life with T has been much more enjoyable.

Kevin

Shared files

Understanding the Mechanisms of Exercise as a Medicine to Increase Survival of Men with Prostate Cancer (Understanding-the-Mechanisms-of-Exercise-as-a-Medicine-to-Increase-Survival-of-Men-with-Prostate-Cancer-1.pdf)

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