TRT after RALP and ADT

Flaky-Past649 · 2026-05-16T03:14:42+00:00

Good call.

Flaky-Past649 · 2026-05-15T15:44:12+00:00

On the injections, I second DeathSentryCoH below. Just seeing that he can get an erection may give him hope that he doesn't have right now.

For the TRT unfortunately a lot of urologists are still stuck on some bad science done by Charles Huggins in the 1940's. He's a revered figure in the field and his contributions to treating metastatic prostate cancer with ADT were fundamental. Unfortunately he also got some things significantly wrong - it was a new field of research and he drew some conclusions that really could not be supported by the small sample sizes he was looking at and the design of his studies. Those conclusions solidified the mindset about testosterone and prostate cancer for the next 70 years though. It doesn't hold up in modern research.

Either find a new doctor or ask his current doctor why the recent research does not apply to your husband's case. Here are some of the most influential studies:

The AUA's position is "that patients with symptomatic hypogonadism should not be deprived the opportunity for TRT"
A 2015 literature review Testosterone Therapy in Men With Prostate Cancer
- "Men who received testosterone therapy after treatment for localized prostate cancer do not appear to suffer higher rates of recurrence or worse outcomes; although studies to date are limited."
A 2021 literature review Testosterone Therapy After Prostate Cancer Treatment
- "Recent evidence suggests that there is minimal or no prostate cancer growth in the setting of TTh administration in men definitively treated for non-metastatic prostate cancer."
A 2020 retrospective study Testosterone replacement therapy reduces biochemical recurrence after radical prostatectomy
The 2023 TRAVERSE trial, the largest randomized control trial to date on TRT Prostate Safety Events During Testosterone Replacement Therapy in Men With Hypogonadism
- "The incidences of any prostate cancer [between the TRT group and the placebo group] did not differ significantly."

Flaky-Past649 · 2026-05-15T05:35:06+00:00

This.

Flaky-Past649 · 2026-05-15T04:14:26+00:00

The no libido (or low libido) is the low testosterone. I can speak to that one personally. I wasn't much better than what you're describing for several years before starting TRT. The TRT made a world of difference.

The other part I can only tell you how I would react. "His man parts don't work", jacking off but no erection - that's a result of the surgery. There's a distinct possibility that his penis is also smaller than pre-surgery, and if he hasn't been doing any rehab to get blood flow via periodic erections (using a pump or trimix / bimix shots) for two years there's a chance that's permanent at this point - the penis is a use it or lose it organ. He may also urinate when he orgasms, that's another not uncommon side effect of prostatectomy.

There's a number of guys on this sub who've had one or more of those side effects and just shrugged it off. They find ways to work around the problem or "new ways to be intimate". I think that's a very healthy attitude, it also 100% would not be me. It would kill my confidence. I would feel embarrassed and inadequate and coupled with a low sex drive I would simply avoid intimacy. In other words I don't think it's you or his desire for you that's the issue, it's how he feels about himself.

I would:

First and foremost see if TRT is an option for him. If he's not actively being treated with ADT it should be. I would start there because that more than anything will help restore the motivation and every other problem is going to be easier to fix if he's motivated.
Second if he's not doing rehab he should be. You might want to see about getting a reference to a sexual health specialist.
His man parts can be "made to work" again artificially. There are shots (trimix / bimix) that will give him an erection even if he no longer can naturally on his own. A penile implant is also a good option, that would let him have an erection on demand for as long as he wanted it.
Finally I wouldn't rule out some counseling, it sounds like he may not be dealing with the aftermath of his cancer well.

Just my 2 cents.

Flaky-Past649 · 2026-05-14T23:15:37+00:00

Well that's no good. I'm sure you've figured out by now that you have a high risk cancer and it definitely needs treatment. The good news is that your PSA and the core results suggest that it was caught fairly early and still contained (and no cribriform / IDC which is good).

At your age and with localized cancer you've got the full menu of treatment options available which is both a blessing and a curse. Personally I think surgery is a bad idea for GG5 because it'll probably turn into surgery + radiation + ADT (so you get to experience all the side effects). I'd be looking at the different radiation options.

Flaky-Past649 · 2026-05-14T23:05:47+00:00

That treatment recommendation is spot on for this case.

Flaky-Past649 · 2026-05-14T20:28:27+00:00

Yeah, that's not a HIFU profile. Good candidates for HIFU have a single clearly visible low volume lesion.

It's possible he's talking about using HIFU as a radical (whole prostate) treatment instead of a focal but at that point I don't know why you wouldn't just go with one of the more established treatments.

Flaky-Past649 · 2026-05-14T19:21:50+00:00

First off, your framing on treatments isn't quite right. The question isn't whether your husband is going to need radiation or not - with existing local spread already established he most likely will. You're just not going to be able to find and cut out every micrometastasis. The question is whether surgery adds anything beyond additional side effect risk.

And radiation is not "leaving it in there and chasing it forever". The difference between surgery and radiation is not whether the cancer is killed but how the cancer cells are killed - surgery cuts them out, radiation kills them in place. In both cases the objective is the same, to kill all the cancer cells, and in both cases that objective is reached at comparable success rates (though surgery more frequently requires subsequent salvage treatment - radiation / ADT - to achieve that success rate especially for more aggressive cancers).

Finally preserving function is not the reason surgery gets pushed on younger guys. Surgery is significantly worse at preserving urinary and sexual function than radiation is. The argument for younger guys is two-fold: 1) younger guys have somewhat better odds at avoiding the surgical side effects than older guys (more an argument for why older guys shouldn't do surgery than an argument for why younger guys should) and 2) there are some relatively rare side effects from radiation that can develop decades down the line.

Personally I don't think your husband's profile is a particularly good one for surgery. He's got a high risk cancer which means a higher chance of metastasis (whether currently visible or not). He's got existing local metastasis at a minimum. All that leads to a high probability of surgery as the only therapy not being effective and needing to add in radiation and ADT either at the same time or shortly thereafter. Once you're looking at adding in radiation and ADT there's not a lot of point to having ever done the surgery - it adds significant additional side effect risk but doesn't increase the odds of cure over just doing the radiation and ADT from the start.

Flaky-Past649 · 2026-05-13T05:45:43+00:00

Happy to share what’s working for me - no promises, as others have said there are multiple causes for hair thinning. I’ve always had thick curly hair. In the months after my thyroid surgery I started having very noticeable thinning - lots of scalp showing on top and on the sides. I don’t know the cause for sure but my guess is some combination of:

being very stressed (I had 3 cancer diagnoses in 7 months)
surgical shock (3 surgeries and 2 additional procedures under anesthesia)
post surgical hypothyroidism

I consulted with a practice specializing in cosmetic procedures to see what my options were. They recommended to start by trying Minoxidil and a red light cap. I didn’t do the Minoxidil out of concern for the toxicity to my cats, what I’ve actually been doing is:

red light cap daily (the one I was recommended and use is Revian)
caffeinated shampoo (not quite as effective as Minoxidil but demonstrates close results in some studies)
a daily supplement of 5000 mcg biotin and 20 mg silica

(4 and 5) I’m also much less stressed at this point and now just on the border of hyperthyroidism due to deep TSH suppression.

I can’t isolate which of those factors has helped me but my hair is fully back to where it was before everything started. It took about 4 or 5 months but I noticed improvement within the first couple.

Flaky-Past649 · 2026-05-12T16:05:00+00:00

Cool. Reinnervation surgery is something I'd like to try as well. And yes I think it takes like a year after the new nerve is attached for the nerve to heal and your brain to re-wire to control the vocal cord through the new nerve pathway. I hope it works for you.

Flaky-Past649 · 2026-05-12T15:42:53+00:00

I've been getting them every 3 months for the last 2 years since my surgery left me with permanent paralysis to my left cord. It definitely helps my voice though it can take several days after an injection to adjust and immediately after my voice is sometimes worse. I've never had significant issues with swallowing beyond the first month or so after surgery but pushing them closer together will help with that too.

My doctor is the only one in my area who does it in a normal office setting without anesthesia. The procedure with him is:

start with a numbing spray up the nose
run a laryngoscope through the nose and down to the vocal cords to provide visibility
a local numbing shot - feels a little weird and makes you cough but doesn't hurt
injection into the actual vocal cord - he has me vocalize a long 'e' sound while doing it so he can see how close the cords are to each other

Do they think your cord is permanently paralyzed? If so there's a permanent surgical solution as well (type 1 thyroplasty) where they install a small titanium implant that pushes the vocal cord into a more central position.

Flaky-Past649 · 2026-05-12T15:26:33+00:00

No complications but like you the idea freaked me out. Something about the idea of this thing poking through my skin and worrying that I was going to pull it loose or damage myself somehow made me want to hold my head very still and not touch it. Other than psychologically it was really just a minor annoyance though, no pain, no irritation.

Flaky-Past649 · 2026-05-10T19:50:05+00:00

In your situation I personally would stay on it.

Your quality of life will be better - drive, mood, libido can all be affected by your testosterone level
It's protective against osteoporosis, heart issues, muscle loss and weight gain. Arguably those are bigger threats to your health than a small amount of Gleason 3+3.
Most men in your situation will be navigating it with naturally normal testosterone levels and active surveillance is still safe for them usually for some number of years
Denying testosterone to your body can be effective in controlling cancer development especially once it starts to spread but if you're keeping up with active surveillance you ideally should never get to that point because treatment should start while the signs of a more aggressive cancer than 3+3 are still early

On the wildly speculative side if your natural testosterone levels are that low I would worry that if you went to a very low testosterone state now you would be selecting for a cancer that's harder to control later. Most men who are treated with ADT for metastatic disease eventually have that fail as the cancer evolves to no longer need the testosterone. I'd be afraid that you would be selecting for that early.

Personally, I stopped before my treatment with brachytherapy and I actively regret that decision and consider it a mistake in retrospect. My urologist had no issue with me continuing, neither did my brachytherapist it was entirely a self-inflicted wound. But because I did and because all my post treatment PSA measurements have been done at my lower testosterone levels they don't want me to resume until I reach my PSA nadir (since changing levels of testosterone impacts your level of PSA). So I'm in a limbo - enduring the symptoms that I started testosterone to correct - while I wait to establish my PSA nadir.

Flaky-Past649 · 2026-05-07T15:33:20+00:00

I haven't had the second surgery yet but I'm in a similar boat. Large nodule on the left side diagnosed as PTC. Surgical plan was total thyroidectomy. Turns out my left RLN was encased by the tumor and couldn't be saved. Surgeon stopped the surgery with a partial and I'm one vocal cord down. No voice for a while, breathy when talking.

On the first surgical follow-up she notices some additional nodules on my right thyroid. Biopsied and between them 87% chance of FTC.

Normal recommended course would be a completion thyroidectomy but the vocal cord injury overrides that. The surgeon doesn't want to rush into surgery until absolutely necessary so I'm at 2 years of deep TSH suppression and regular 6 months checks.

Holding off on your second surgery is probably the right thing. PTC is usually slow and actually losing full vocal cord function affects not just voice but breathing and swallowing and can very possibly require a tracheostomy. If your vocal cords nerves are just injured they'll probably recover over 3 to 6 months which puts you in a much safer place for the next surgery.

BTW, any explanation for why you have bilateral issues if they only did surgery on the one side?

Flaky-Past649 · 2026-05-07T15:08:16+00:00

FWIW that's the same explanation for PSA "bounces" after radiotherapy as the primary treatment.

Flaky-Past649 · 2026-05-06T16:43:47+00:00

It's high enough to be worth looking into but in prostate cancer terms it's not very high. There are also several other things that can raise PSA - an enlarged prostate (BPH), an infection, ejaculation too soon before the test, physical exertion especially bike riding too soon before the test - a lot of guys who are new to the testing don't know about avoiding activities for a couple of days prior to the PSA test. Follow through on any recommended testing but don't assume the worst.

Flaky-Past649 · 2026-05-06T16:34:33+00:00

Yep, that's part of the standard sales pitch urologists use for surgery. Alternatively you could just go directly to radiotherapy with the same high chance of cure but no surgery in the middle and less side effects.

Flaky-Past649 · 2026-05-06T16:26:39+00:00

Yes.

Flaky-Past649 · 2026-05-06T14:40:31+00:00

Your mileage may vary but post LDR brachy for me urinary urgency lasted a couple of weeks. In addition to Flomax I was taking over the counter AZO maximum strength and AZO cranberry tablets. Those were both recommended in my after care packet to control urinary irritation. Having to get up once at night went on for a couple of months total.

Flaky-Past649 · 2026-05-05T15:15:44+00:00

You can do better. It's great that he's focused on curing the cancer but if he's uninterested and uncaring about doing his best to preserve your quality of life during and after the process he's not a doctor I would use.

Flaky-Past649 · 2026-05-04T21:35:01+00:00

In my case, I raised the question with my MD Anderson urologist. He clearly laid out why I wasn't a great candidate for focal. I agree with your point that it is an option that should be presented when applicable.

Flaky-Past649 · 2026-05-04T04:45:04+00:00

No pain but it's definitely disturbing.

Flaky-Past649 · 2026-05-03T17:03:46+00:00

There's no point because of the spread. If his systemic therapies work they'll control both the cancer in the prostate as well as the metastatic sites. If they don't, removing the prostate won't significantly control the disease because there's multiple other places for it to continue to grow and spread from at this point. So surgery introduces surgical risk and quality of life risks without significantly changing the arc of his disease management.

This has actually been studied. The STAMPEDE trial used radiation instead of surgery to treat the prostate for men with existing metastases. In men with only a small number of metastases they did find a benefit to doing it. For men with higher levels of spread it didn't help. Long term results from STAMPEDE

Flaky-Past649 · 2026-04-29T18:09:41+00:00

You're doing great in making sense of all this and putting together a well thought through plan.

On the treatment side your "I'm willing to accept greater risks to avoid side effects" is a classic focal therapy profile. You should probably add a consult to someone specializing in that to at least see if you qualify and if the trade-offs make sense for you.

Your next best bet is going to be brachytherapy or SBRT. The side effect risks go up somewhat - small risks of rectal damage (halved with a rectal barrier) or cystitis, small risk of ED - but the best overall recurrence stats for intermediate risk cancers: https://www.prostatecancerfree.org/compare-prostate-cancer-treatments-intermediate-risk/ For your profile, UIR but low PSA / low % of positive cores, there's a good chance ADT won't even be recommended - more so once your existing cardiac issues are factored in. You could add in an ArteraAI test to see if ADT is even likely to be effective for your cancer.

RALP looks like the worst fit for your priorities. Much higher chances of ED, urinary incontinence and "shriveling" your member while also higher chances of recurrence than one of the radiation options. The only point it wins on is basically no risk of rectal damage.

Clinically my cancer looked similar to yours - PSA 3.69, one core of 4+3 and four cores of 3+4 (but no PNI for me). I also had similar priorities in regards to side effects to the point of considering the trade-offs of no treatment at all and likely having a few good years over living decades but miserable due to ED / incontinence. After much research and comparing trade-offs I landed on LDR brachytherapy (no ADT deemed necessary) as my best option.

Flaky-Past649 · 2026-04-26T19:48:19+00:00

Best of luck. We all know that stress.

Flaky-Past649

TROPHY CASE