Should I try T replacement again?

[kapakahi]

Before I was diagnosed with PC in 2008, for about 10 years (since about age 50 I think) I'd been using a prescribed testosterone cream after learning my T counts were low -- like low 200s, still within "normal" range but evidently not normal for me because I was depressed, with no energy, no desire to do anything, no sex drive, symptoms that began imperceptibly but gradually deepened over time. Ever since my teens, I'd had a varicocele in one testicle that no doctor ever thought to do anything about, and over the years it had gradually strangled it until it atrophied (the doctors now say it's too late to fix it), and my T count had dropped accordingly, much more than it should have with normal aging.

Well, the T replacement changed my life, and for the first time in a long time I actually cared about things, had energy, gained strength, felt better about myself and life...and found a wife, and developed a wonderful love life. And only two years after we married, I got the PC diagnosis. Had to stop the T cream. After my first HIFU treatment, my doctor grudgingly allowed me to resume, but the PC began growing again - he said it was obviously activated by testosterone and I had a choice to make - stop the T and contain the cancer, or continue the T and risk metastasis. I chose to stop the T.

And over the succeeding years, my depression (which actually began in childhood - that's another story), lack of vitality and lack of caring about anything returned. I tried to remain physically active - I'd always surfed and bicycled and lifted - but gradually arthritis robbed me of the ability to do those things, and even walking for any distance was painful. I lost interest in sex, much to my wife's chagrin, but she has stuck by me nonetheless, and every day several times a day I feel so bad about how I've lost desire for her (and everything else).

So now I'm 75 - I've never had metastasis, my HIFU-ravaged prostate is half gone and my PSA seems stable at 1.5 (maybe it would be 3.0 if it were a whole prostate?). For a while I wondered if maybe I didn't even have PC anymore, but a rise in PSA from 0.6 to 2.2 in about 6 months in 2019 led to an Axumin scan that "suggested" PC activity that was hard to discern for certain due to such heavy scarring from HIFU.

But I feel so bad all the time now, and when I think back over the past 14 years, and review my gradual decline to this state of overwhelming sadness (only an antidepressant keeps me from suicide), I wonder if it was worth it to stop the T in fear of metastasis. Of course I know I would not have wanted metastasis far more than I wanted a normal testosterone life, but still...it's hard for me to imagine having to live the rest of my life in such misery.

And so I wonder if it's worth it to risk resuming T replacement. I know it wouldn't help the pain of disabling arthritis, but it would help my outlook on life, give me some hope of being able to love life again. My new doctor suggests I could try DHEA, but I've read conflicting things about whether it raises T levels or not. I've read some things here, mainly in Advanced PC forum, about high doses of T working wonders without regenerating PC, but those are for men with advanced PC who have gone through the wringer of treatments and been in far worse shape than I've ever been. I feel like I'm in some ambiguous middle ground where there are no straightforward answers simply because my PC situation has never become so drastic and life-threatening. I don't know that any doctor would even prescribe the stuff for me.

But...well, I'm just thinking this out as I write, trying to figure out how I feel. Sorry for droning on, and if you read this far, thanks for reading. Any insights would be much appreciated.

[Tall_Allen]

Why not have salvage radiation of your prostate. If that is successful, you can resume TRT.

[kapakahi in reply to Tall_Allen]

Thanks, Tall_Allen. Is SRT available to men who still have a prostate, or the remains of one? I thought it was only for those who'd had RPs. Which kind of radiation is likely to be the best? (SBRT, IMRT?) I suppose it would be what the doctor decides. HIFU has already given me some urge incontinence and even occasional bowel incontinence, so I wouldn't want to make those worse -- those are huge reasons why I avoided radiation in the first place, and those reasons are what I heard from doctors. I guess there have been advances since 2008?

And where would be a good place to get it on the west coast? Some place with a very successful track record. I'd try OHSU but it's kind of small compared to places in Washington and California. (It was a radiologist at OHSU who refused to give me an MRI-guided biopsy because of the scarring: "I wouldn't know what to biopsy." That's how bad my prostate is.) I'm most familiar with L.A. area, but the Bay Area is good for me as well. It would help immensely if the doctor was known not just for skill but for listening abilities and patience.

[Tall_Allen in reply to kapakahi]

Dr. Amar Kishan at UCLA has a new linac (Viewray MRIdian) that he can use to minimize bowel damage from salvage SBRT. Another option is salvage whole gland HDR-brachytherapy from Joe Hsu at UCSF. But I fear the urinary incontinence will get worse with either. Maybe do a telephone consultation with them before traveling.

Salvage focal brachytherapy seems to be precluded by the fact that you can't localize it because you can't read an mpMRI or a biopsy of the HIFU tissue.

[kapakahi in reply to Tall_Allen]

Okay, thanks TA. I may call them, but it looks like I'd have to choose between continence and feeling better, and I think I'd choose continence -- that's how much of a hassle and embarrassment incontinence can be. It's worth a shot to call though, maybe they know of options. Thanks again.

[Hidden]

I hear what you're saying. I've known some people that get back on it but after radiation. Dr. Scholz will do it but the right radiation has to be done first.

[Aodh]

I can’t advise you what to do but personally I wouldn’t want to risk waking the beast as they say; I’d prefer to exhaust all other options first.

I’ve been through very severe depression and like you it started very early in life and I’ve tried (at doctors request nearly every type of anti-depressant known to man). Most provided little or no relief, usually only enough to survive a crisis.

I was very lucky over 20 years ago now to be introduced to a psychodynamic psychotherapist whom I attended 3 times a week for 5 years (money ran out) but I learned enough about me to be able to live life without fear and without depression.

I’ve even navigated enforced early retirement followed immediately by my prostate cancer diagnosis and treatment with radiation and 3 years of ADT without getting depressed. Hell I’ve survived being cocooned by myself by Covid19 during that time and I still have a smile on my face and am interested in life. I’d be a saint but there’s no money or fun to be had there!!

I’ve had no testosterone for 3 years and am actually happy and looking forward.

I hope that you find what you need to move forward.

Hugh

[kapakahi in reply to Aodh]

Thanks Hugh. You're in a place I envy. I've had poor luck with therapists -- except for the one I'm married to, and I can't benefit because of dual relationship restrictions. (And she herself doesn't get a good feeling about most of them.) My new doctor found that I have a genetic inability to process folate in its usual form (folic acid), and that deficiency has a strong correlation to depression, so I'm about to start with a form that I can use. Hope it works.

[Aodh in reply to kapakahi]

Please don’t envy me, I’m still on my voyage of self discovery and hope to remain so until the moment of death! I’ve found that the journey has many twists and turns, the water even flows uphill at times. I do hope that your folate solution brings benefits. I too have similar issues, so I have learned something new today; thank you.

Hugh

[Uxp_d]

Sorry for the depression,but your psa is low mine is 13,all these treatments come with a price

[Fash01]

Did you continue taking Fenben? I read some of your posts from three years back which seemed like you had some success.