New to Prostate cancer

@brianjarvis Thanks for the reply, while not 'athletic" I am quite active, 4 mile morning walk, 2 mile late afternoon walk, every night I play Wii games, golf, bowling, swinging bat to stretch and mix in 10 pushups x 9 sets, then I ride my stationary bike for 35 minutes so exercise is not an issue for me. I hope ADT allows me to continue my activities, my wife and I are also active in the bedroom so we are preparing for that issue as well.
Thank you for the support #RockOn

You appear to have been diagnosed as "high risk". My case is somewhat similar. The way the docs describe my case is

"PSA 7.7, cT3b, GGIII (4+3), 5 of 12 cores, biopsy proven seminal vesicle involvement, no PNI or EPE. There was "no evidence of metastasis" on the PET scan, but the report stated there was "no prostate uptake" of the radioactive indicator.. My doctors agree my case could be described as "localized", but they usually call it "high risk".

The "high risk" means it is common when a case appears localized like this, and hence there is a good possibility of long term "cure" or remission, that the cancer may have already migrated undetected to distant areas of my body, or it soon will. So they want to hit it hard, and they try to minimize how hitting it as hard as they do will have on our quality of life. It has to be stressful to inflict such suffering on people who otherwise look and feel healthy, so I suppose it is natural for them to try to minimize what is bad for us in what they do.

Don't believe the voices you hear that prostate cancer is just an endless roller coaster that never ends. Many patients are treated once and no amount of monitoring finds cancer for the rest of their lives. Old age is incurable. Prostate cancer often is.

My radiation oncologist (RO) appeared to have no doubt in his mind that my treatment would be what is prescribed for you, i.e. external beam radiation therapy + 2 years of ADT. I agree with you that its the ADT I'm most concerned about.

So, I don't know what you should do. What I am doing is researching to find out if this RO has recommended what is best for me. I don't think he has. I've presented evidence to him and he has scheduled an appointment to re-evaluate my case.

The type of thing that impressed me:

A presentation by Dr. Nelson Stone at the 2024 Prostate Cancer Symposium "Radiation Dose and Hormone Therapy: How much is Enough?" This guy has been banging on about this for many years. The organizations that set the guidelines, such as the ones your RO and mine followed when they sentenced us to 2 years of ADT, take time to change.

Eg: on a relatively minor point. This guy published in 2013 saying he had discovered that gland size was not an issue when considering patients for brachytherapy, and it took until 2022 for the Europeans to change their guideline, and the US has not changed yet. My RO initially rejected my request for brachytherapy boost on the grounds my prostate was too large. I pointed out this guy's research, what the Europeans did recently, and I expect him to change his mind on that point or I'm heading off to somewhere else.

An article that restates what Dr. Stone is saying was published by Manuj Agarwal in the ASCO Post last year: https://ascopost.com/issues/march-25-2024/brachytherapy-boost-may-decrease-the-duration-of-androgen-deprivation-therapy-for-high-risk-prostate-cancer/

It took me a long time to figure out what these oncologists are talking about, enough to gain a minimum level of confidence to disagree with the one I'm dealing with.

I always understand that I may not have a clue about what I'm talking about, and in any discussion with a professional, all I do is point to the most highly regarded guideline setting organization, or the most highly regarded researcher, or the most highly regarded practitioner that I can find who is saying something otherwise.

@csimadera1 There’s no question (and it’s very well-documented) that staying active, walking a few miles on a regular basis, bicycling, etc. is great for overall health.

But, as you can tell from the tone of the discussions on those links above, this involves more than that. In this case we’re talking about being injected with a very toxic substance (ADT), that’s going to affect you on the cellular level, and wreak havoc on your metabolism (as it pushes your testosterone levels to near-zero).

The loss of energy that you’ll experience from near-zero testosterone levels will show up in basic home activities including walking, bicycling - even simple activities like yard work and gardening. Remember that the hormone that gives you all of your male characteristics, including strength, fitness, endurance, etc, is basically being suppressed. Your testosterone levels will be below most women’s levels. You’ll be going through what’s often referred to as “male menopause.”

That’s where resistance-training exercise comes in. Somehow - and I don’t know the science behind this - maintaining lean muscle mass minimizes the adverse side-effects of ADT. (Other references I’ve read mention that high intensity interval training (HIIT) will work as well.)

If you’re able to, start resistance-training (or HIIT) exercise well before that first ADT injection. Once the side-effects of ADT start, it’s difficult then to have the strength & endurance to start.

Activity in the bedroom can be affected as well. Testosterone being suppressed usually affects libido; low libido may affect performance. (My libido went to zero.) However….. despite my having no libido while on Eligard, everything still worked. From what I was told by my medical oncologist, the key is to continue “doing it,” despite the “want to” not being there.

Though I have no data to support this (only my MO’s advice that it would work - and it did), my experience not having ED while on ADT might be related to me ramping up my resistance-training exercises and cardio programs to minimize the side-effects of hormone therapy; that might(?) also have the side-benefit of keeping the blood flowing “down there” as well (since ED is often much about blood flow and hydraulics, even for those not on ADT).

Libido eventually returned to normal when testosterone returned to normal.

You appear to have been diagnosed as "high risk". My case is somewhat similar. The way the docs describe my case is

"PSA 7.7, cT3b, GGIII (4+3), 5 of 12 cores, biopsy proven seminal vesicle involvement, no PNI or EPE. There was "no evidence of metastasis" on the PET scan, but the report stated there was "no prostate uptake" of the radioactive indicator.. My doctors agree my case could be described as "localized", but they usually call it "high risk".

The "high risk" means it is common when a case appears localized like this, and hence there is a good possibility of long term "cure" or remission, that the cancer may have already migrated undetected to distant areas of my body, or it soon will. So they want to hit it hard, and they try to minimize how hitting it as hard as they do will have on our quality of life. It has to be stressful to inflict such suffering on people who otherwise look and feel healthy, so I suppose it is natural for them to try to minimize what is bad for us in what they do.

Don't believe the voices you hear that prostate cancer is just an endless roller coaster that never ends. Many patients are treated once and no amount of monitoring finds cancer for the rest of their lives. Old age is incurable. Prostate cancer often is.

My radiation oncologist (RO) appeared to have no doubt in his mind that my treatment would be what is prescribed for you, i.e. external beam radiation therapy + 2 years of ADT. I agree with you that its the ADT I'm most concerned about.

So, I don't know what you should do. What I am doing is researching to find out if this RO has recommended what is best for me. I don't think he has. I've presented evidence to him and he has scheduled an appointment to re-evaluate my case.

The type of thing that impressed me:

A presentation by Dr. Nelson Stone at the 2024 Prostate Cancer Symposium "Radiation Dose and Hormone Therapy: How much is Enough?" This guy has been banging on about this for many years. The organizations that set the guidelines, such as the ones your RO and mine followed when they sentenced us to 2 years of ADT, take time to change.

Eg: on a relatively minor point. This guy published in 2013 saying he had discovered that gland size was not an issue when considering patients for brachytherapy, and it took until 2022 for the Europeans to change their guideline, and the US has not changed yet. My RO initially rejected my request for brachytherapy boost on the grounds my prostate was too large. I pointed out this guy's research, what the Europeans did recently, and I expect him to change his mind on that point or I'm heading off to somewhere else.

An article that restates what Dr. Stone is saying was published by Manuj Agarwal in the ASCO Post last year: https://ascopost.com/issues/march-25-2024/brachytherapy-boost-may-decrease-the-duration-of-androgen-deprivation-therapy-for-high-risk-prostate-cancer/

It took me a long time to figure out what these oncologists are talking about, enough to gain a minimum level of confidence to disagree with the one I'm dealing with.

I always understand that I may not have a clue about what I'm talking about, and in any discussion with a professional, all I do is point to the most highly regarded guideline setting organization, or the most highly regarded researcher, or the most highly regarded practitioner that I can find who is saying something otherwise.

My husband got diagnosed in February (2025 so this year) PSA was almost 300, CT scan showed outside prostate, biopsy Gleason were mostly 8 and 9s, PSMA scan showed it all over his body!!
They started him on Firmagon and was going to switch to Lupron but like you, my husband was not happy about the possible side effects of Lupron, so they agreed to wait until his was ready and he's been doing monthly Firmagon shots since then! Side effects are hot flashes and night sweats and being emotional like sad..... It's all sad and I said I'd cry with him and we can have hot flashes and night sweats together and cry over sappy movies!
Of course no sex life either! But I'd rather have a live husband and no sex life than a dead husband and still no sex life!
A few months later they started him on Zytiga and Prednisone ( he has technically wrecked his liver from taking lots of supplements and once he quit those the liver went back to normal)
Then over the summer he did 6 rounds of docetaxel chemo and did very well! Other than more tiredness- so daily naps on the couch while I rubbed his head..... and after round 2 the hair started falling out so he shaved it- we also got the chemo gloves and mittens from amazon and I think they worked a bit, he only got one numb toe for a few months after it all, but he's fine now.
after the chemo was done they did another PSMA scan and it was a HUGE improvement! only 2-3 small spots now! How long that will last, we don't know, we were happy but not jumping for joy! and the doctor just said it's good and keep doing the ADT drugs.
It's really hard for a guy to accept to be medically castrated! we had lots of arguments about it, that if I got breast cancer and had to have them removed, I'd do it or whatever surgery, maybe because as women we already know we'll go thru a change and not be able to have children after a certain age! But with men, it's the manhood! don't mess with the manhood! He'd rather die than lose THAT! He finally relented and knows he sacrificed his body for the family!
we did try some "happy" pills a few months ago and succeeded but he said it was mechanical and no emotion or drive behind it, so.....
his PSA is 0.35 now btw going back next week!

My husband got diagnosed in February (2025 so this year) PSA was almost 300, CT scan showed outside prostate, biopsy Gleason were mostly 8 and 9s, PSMA scan showed it all over his body!!
They started him on Firmagon and was going to switch to Lupron but like you, my husband was not happy about the possible side effects of Lupron, so they agreed to wait until his was ready and he's been doing monthly Firmagon shots since then! Side effects are hot flashes and night sweats and being emotional like sad..... It's all sad and I said I'd cry with him and we can have hot flashes and night sweats together and cry over sappy movies!
Of course no sex life either! But I'd rather have a live husband and no sex life than a dead husband and still no sex life!
A few months later they started him on Zytiga and Prednisone ( he has technically wrecked his liver from taking lots of supplements and once he quit those the liver went back to normal)
Then over the summer he did 6 rounds of docetaxel chemo and did very well! Other than more tiredness- so daily naps on the couch while I rubbed his head..... and after round 2 the hair started falling out so he shaved it- we also got the chemo gloves and mittens from amazon and I think they worked a bit, he only got one numb toe for a few months after it all, but he's fine now.
after the chemo was done they did another PSMA scan and it was a HUGE improvement! only 2-3 small spots now! How long that will last, we don't know, we were happy but not jumping for joy! and the doctor just said it's good and keep doing the ADT drugs.
It's really hard for a guy to accept to be medically castrated! we had lots of arguments about it, that if I got breast cancer and had to have them removed, I'd do it or whatever surgery, maybe because as women we already know we'll go thru a change and not be able to have children after a certain age! But with men, it's the manhood! don't mess with the manhood! He'd rather die than lose THAT! He finally relented and knows he sacrificed his body for the family!
we did try some "happy" pills a few months ago and succeeded but he said it was mechanical and no emotion or drive behind it, so.....
his PSA is 0.35 now btw going back next week!

@beaquilter It’s been a tough year for you and your man Bea. But hopefully the worst is over now.
Do they plan to zap those three remaining spots or just continue with ADT indefinitely?