Hormone therapy for the older generation - Advanced Prostate...

Advanced Prostate Cancer

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Hormone therapy for the older generation

tunybgur profile image
39 Replies

My calendar is telling me that I've just completed 12 months of hormone therapy (prostap) and my PSA after radio and brachytherapy when last measured was 0.01.

I'm nearly 77 and after 12 months, I'm really suffering from complete lack of energy, just getting out of bed in the morning is hard work, I was never like this, always on the go, in the garden, playing golf or down the gym etc, quality of life is very low at the moment.

From my research it would appear after my 2 years of HDT, somebody my age is very unlikely to return to any meaningful testosterone levels.

If this is the case, perhaps I can go for a shorter HDT time, perhaps only 1 year and then I may get a modicum of my energy levels back again....at the moment I am approaching my next prostap injection with dread.

I can understand a younger person, 50's or so, needing to complete 2 years of HDT, but is it really necessary for someone a lot older?

I would be interested in any experience or opinions from informed people.....

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39 Replies
NotDFL profile image
NotDFL

I would think that it is OK to stop ADT. Just follow your PSA on a quarterly basis. If it rises too much, more ADT might be considered.

Tall_Allen profile image
Tall_Allen

According to Kishan's analysis, 12 months of ADT may be sufficient with brachy boost therapy:

prostatecancer.news/2022/01...

tunybgur profile image
tunybgur in reply toTall_Allen

Thanks TA, it's a very informative study, and telling me what I hoped to hear. You must have quite a comprehensive library of information, we should all be thankful to you.

After having EBRT followed immediately with BBT, I feel confident that 12 months ADT will be a sufficiently therapeutic dose (at my age) as the full 24 months. I don't really expect to see my testosterone return to its pre ADT levels, but if I can just get some energy back it will be enough.

Whether I have the nerve to go against the advice of the surrounding professionals, well I'm discussing it with my wife, after all, she is the other one most affected by my condition. She would like me to aim for 18 months as being a good compromise....I've got a few weeks to think about it.

Once again, thanks for your help.

Good luck to all us fellow survivors

Tall_Allen profile image
Tall_Allen in reply totunybgur

I suggest you email Kishan's study to your oncologist with a short note saying you would like to discuss it at your next meeting:

jamanetwork.com/journals/ja...

tunybgur profile image
tunybgur in reply toTall_Allen

Will do

Conlig1940 profile image
Conlig1940 in reply toTall_Allen

Has anyone had Monotherapy LDR Brachytherapy ( yes excluding EBRT and ADT ) for Gleason 3+3=6 prostate cancer as the least invasive option to Active Surveillance ?

Tall_Allen profile image
Tall_Allen in reply toConlig1940

They used to do that regularly before AS became the standard of care for low risk PCa.

Conlig1940 profile image
Conlig1940 in reply toTall_Allen

I am aware they still do it with LDR plus HDR , But how often .

Anyone had this procedure ?

Tall_Allen profile image
Tall_Allen in reply toConlig1940

"LDR plus HDR"? I never heard of that. Here's some data on LDR-BT monotherapy across risk groups:

prostatecancer.news/2016/08...

Why do you not want active surveillance?

Conlig1940 profile image
Conlig1940 in reply toTall_Allen

LDR and ( both) HDR I.E. One or the other .

Re : Active surveillance -- Just being proactive looking for options .

ARIES29 profile image
ARIES29

I am 75 & on Nubeqa with Zoladex. Recently my PSA was 2.4 so I asked when can I go for time out, answer was 0.01 PSA reading.

tunybgur profile image
tunybgur in reply toARIES29

I hope that it's on the way down?

ARIES29 profile image
ARIES29 in reply totunybgur

In the reply from Maley271 the info sugests 18 months would be the best time to quit the ADT because longer than that is increasing the risk of mortality from something else. That is what I will be looking at along with the PSA reading. Good health to you.

London441 profile image
London441

I would go ahead and quit, see what happens. However if you do don’t expect a miraculous improvement in your energy, focus etc. Difficult though it may be, exercise will make substantially more difference than anything else. Try to find a way-trainer, PT, a partner, whatever you have access to.

tunybgur profile image
tunybgur in reply toLondon441

I do exercise, but whether it's enough or the right type, I don't know.

The problem is my mental attitude to physical challenges is not what it used to be, a certain air of depression hangs over everything I do, I try to shake it off but it's difficult, that's what I would like to change more than anything.

I try to mask it from those around me, but I can't fool myself.....

Good luck and thanks for the advice....just going out for a walk ;-)

London441 profile image
London441 in reply totunybgur

This is all too familiar, you are not alone. Less movement invites the depression, more movement alleviates it. Walking and other cardiovascular activity is good, but lifting really does the job. Antidepressant medication may help too. Use every tool you have, but again exercise is the magic. Great luck to you!

Mascouche profile image
Mascouche in reply totunybgur

As London441 said, you are not alone who feels this way. For probably the first year after starting my initial treatments, I think I must have been depressed. No one in the family knew as I did not want to add my burden to theirs since they were already sad for fear of me dying.

Now I only feel depressed for an hour or two after I wake up because I feel so drained, more so than before I went to bed. But I kick myself and go to the gym before I start my work day and the harder I train the better I feel afterwards for the rest of the day.

Also, don't think long term. Try to keep your mind in the present.

Best of luck!

tunybgur profile image
tunybgur in reply toMascouche

I will make a conscious effort, seriously, it's just that things don't seem to improve, that's why I would like to slowly get off ADT if it's not totally necessary, then I could look forward to possible improvements on the horizon.

Derf4223 profile image
Derf4223 in reply totunybgur

@tunybgur Look at ADT this way. It suppresses the heck out of prostate cancer cells (at least for months to 2-3 years, for most) and especially if you take abiraterone or another of the ARSI's, the idea is that the cells slowly die off, including circulating tumor cells (hard to test for), small/micro lesions, etc. When you stop ADT, you will start anxiously looking over your shoulder for BCR or worse. So where do you want to be -- jumping off the ADT train as soon as you can and then having higher odds of BCR or worse?

If its the side effects that worry you, stopping might not stop them. So if you jump into the BCR/recurrence fire-pan you may still have ADT long term SE's to boot.

APCa treatment is full of hard decisions, none of which are without their own bad possibilities. My take is summarized in my personal mantra "Suck it up buttercup."

There are many messages and threads on this web site. Sometime lookup those that claim some alt elixir/cure-all, especially from 3-4-5-6 years ago, and see if the poster accounts are still open. Closed accounts generally are the result of the poster no longer being on this dirtball. Conclusion: the elixir/cure-all probably fails.

tunybgur profile image
tunybgur in reply toDerf4223

Hi Derf,

Thanks for your appraisal of the situation.

My question was about age and the possibility of shorter term ADT for older people, because we are unlikely to ever recover our testosterone completely.

I fully agree about completing the full tern if you're younger, 50's or so. because you will certainly recover your testosterone.

I'm not trying to skip the treatment, just questioning the age related stuff.

Tall Allen attached a paper which suggests 12 months is fine for someone my age, that's what i was querying.

Good luck

maley2711 profile image
maley2711

Here is something to read and consider......

urotoday.com/conference-hig...

Scroll down to the graphs showing duration of ADT and outcome for overall survival, distant metastasis-free survival, and PCa-specific mortality. I make no claim that the study results are a perfect representation of the "true" ADT duration impact on those 3 endpoints, I believe those results are not to be dismissed!! 12 months is certainly not optimal, but there seems to be no doubt that 12 months is quite effective compared to 6 months, etc. I understand your thoughts on this duration question at your age!!!! Even 36 months is no guarantee fo great longer-term outcome!!!

tunybgur profile image
tunybgur in reply tomaley2711

Thanks for the link, Tall Allen gave me a similar one, 12 months may be enough.

I'm wary about going against the professional advice unless I have some backup from studies such as these.

I'm also discussing it with my wife, she wants me to go for 18 months as a compromise, still thinking about it.....

Thanks for the data

Good luck

janebob99 profile image
janebob99

You are correct that your natural testosterone will not recover for at least 2-3 years after such a long course ofADT.

You are a good candidate for taking supplemental testosterone now. Continue to watch your PSA, of course.

tunybgur profile image
tunybgur in reply tojanebob99

I just want to get a little bit of energy back to make my QoL more tolerable, we were all warned about this but it still doesn't prepare you for the reality.

Good luck

janebob99 profile image
janebob99 in reply totunybgur

Are you considering doing supplemental T ?

tunybgur profile image
tunybgur in reply tojanebob99

Not really, it seems counterintuitive to spend so much time suppressing testosterone and then to supplement it when I don't really know whether there are some little mets hiding and waiting to pop up.

I think I'd rather stop the ADT and then let nature take its course.

janebob99 profile image
janebob99 in reply totunybgur

That makes sense.

Mascouche profile image
Mascouche in reply tojanebob99

Don't take this the wrong way as I am not saying this to be confrontational but it does not make sense to me. Even though that is pretty much what everyone says.

Isn't it the mere presence of testosterone that feed the prostate cancer, rather than the volume/amount/level of testosterone?

Wouldn't the cancer progress the same way or at the same speed whether you have a natural 100 ng/dL of returning Testosterone or a 500 ng/dL injection of Testosterone?

If it would, then might as well inject 500ng.dL and feel like a younger man.

Unless the higher the T the faster the cancer spreads?

Mascouche profile image
Mascouche in reply toMascouche

I've asked this question of "Wouldn't the cancer progress the same way or at the same speed whether you have a natural 100 ng/dL of returning Testosterone or a 500 ng/dL injection of Testosterone?" to the Perplexity AI which started its answer with the saying the expected "during ADT you want the testosterone level to be as low as possible" but that was not what the question was about.

But in the end it actually answered my question with:

"The studies mentioned here focus on testosterone suppression during ADT, which is different from the scenario of natural testosterone return or exogenous testosterone administration that you've asked about.

For a definitive answer regarding the impact of different testosterone levels (natural vs. injected) on cancer progression in advanced prostate cancer patients who are not on ADT, further specific research would be needed. "

So in short, when not on ADT no one knows if the natural return of T impacts progression/recurrence more or less than injected T.

Wdoug profile image
Wdoug

Having gone through it from 73-76, I am now, at 80, happy that I did. It was worth it for me.

Mgtd profile image
Mgtd in reply toWdoug

Would you do it at 80?

Wdoug profile image
Wdoug in reply toMgtd

Knowing what I know now, probably so. My testosterone recovered nicely and fortunately am able to go to work out daily. Unfortunately, I've now got melanoma in scalp. They could not surgically get it all so and am dealing with infusions - but still staying active.

Mbnm profile image
Mbnm in reply toWdoug

i am confused I am old wiil be 85 next february and one year on abi,pred and lupron…my psa high was12.5 and is now under 0.2…no cancer only in prostate and lymph nodes and no thought I can stop treatment

How did you knowyou could stop ?

tunybgur profile image
tunybgur in reply toMbnm

If you have PSA+0.2 and known progression however slight then unfortunately you can't stop

Mgtd profile image
Mgtd

Timely post. I was told I had biochemical recurrence yesterday with what I considered to be extremely low PSA and have been wrestling with the issue of going back on ADT at almost 80. Tough call and adding back T is in the same category but QOL weighs heavily versus quantity of life especially for us older guys.

Wish you luck with your decision.

j-o-h-n profile image
j-o-h-n

87 and get exhausted just sweating....

Good Luck, Good Health and Good Humor.

j-o-h-n

Teacherdude72 profile image
Teacherdude72

The only thing that has helped me with energy at age 76 is quality, not from China, mushroom coffee. Not from Amazon, Walmart or temu as all are China.

tunybgur profile image
tunybgur

I've never tried it, where do you get the best ?

j-o-h-n profile image
j-o-h-n

Chinatown?

Good Luck, Good Health and Good Humor.

j-o-h-n

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