ADT yes or no: My urologist has... - Advanced Prostate...

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ADT yes or no

MontanaMan profile image
34 Replies

My urologist has recommended ADT treatment followed by radiation. I am concerned about the ADT because of the side effects.

What are the risks with radiation without ADT?

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MontanaMan profile image
MontanaMan
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34 Replies
Oatmeal2 profile image
Oatmeal2

Hi, sorry to hear of your diagnosis, but with Gleason 8, in my opinion, you are definitely going to need ADT with the radiation for curative intent. Gleason 8 is high risk, more aggressive. There are several links that Tall_Allan has posted showing the efficacy of radiation and ADT. Have you gone for a PSMA PET scan? My husband was diagnosed with Gleason 9 in August and had 26 rounds of IMRT and is on firmagon injections for 2 years. The antagonist hormone therapies seem to have less side effects. I know a lot of doctors prescribe agonists like lupron or eligard, but there are newer antagonist drugs like firmagon, and pills that can be taken daily as well that seem to be more well tolerated than the agonist drugs. I know a lot of men are afraid of the side effects of ADT, but many men do very well with mild side effects.

Tall_Allen profile image
Tall_Allen

You may have been reading about side effects in men taking ADT permanently. You will only be taking it for 2 years (starting 2 months before radiation).

The risk of radiation without ADT in high-risk men like yourself, is that the radiation will not completely kill off your cancer. The difference is significant. Then, you may have to have it permanently.

You may wish to join this clinical trial in Great Falls, Montana that tests whether a shorter duration of ADT can be used:

classic.clinicaltrials.gov/...

You should have a PSMA PET/CT to rule out distant metastases.

tunybgur profile image
tunybgur in reply to Tall_Allen

It's interesting that you say to start RT 2 months after starting ADT.

I have always wondered about the timing of these treatments.

I am about to start RT 6 months after starting Prostap. It has always been my concern that it seems a long time and surely some mets could start in this timeframe?

My MO seems confident about achieving a cure, I was PSA 27, Gleason 8, stage 3a when the original diagnoses was made. No visible mets and clear bone scan.

3 months ago my PSA was 1.29, I am scheduled for 23 RT sessions followed by HDR brachytherapy.....I haven't noticed any deterioration of my condition apart from my water perhaps getting slower.

Should I be concerned about the length of time between treatments? Do you have any stats around this?

Tall_Allen profile image
Tall_Allen in reply to tunybgur

No need for concern. The hormone therapy prevents activation of the androgen receptor for at least several years.

The trial data that showed that 6 months of neoadjuvant treatment is more beneficial than 3 months is this:

thelancet.com/journals/lano...

But this trial showed there was no difference:

ascopubs.org/doi/full/10.12...

In a meta-analysis, Kishan showed that only the concurrent and adjuvant ADT made any difference. But the concurrent use in all his trial was two months long, which is longer than the RT durations used now. Also, he only looked at Metastasis-free survival, not cure (biochemical recurrence-free survival):

thelancet.com/journals/lano...

Of course non-response would be a bad sign.

tunybgur profile image
tunybgur in reply to Tall_Allen

Thanks for taking the trouble to reply, it is comforting to know my prostate could have significantly shrunk in the last 6 months, together with the tumour!

Keep up the good work! Knowledge is power....

cancerfox profile image
cancerfox in reply to tunybgur

Prostate shrinkage? HaHa! After IMRT, LDBrachy, and 13 months of ADT, mine is completely non-functional 2 years later. I may as well have had it surgically removed. 🦊

tunybgur profile image
tunybgur in reply to cancerfox

Well I guess I'm on my way to joining you, but at least we're still here to discuss it....good luck.

cancerfox profile image
cancerfox in reply to tunybgur

Well, I hope you have better luck with it. And don't get me started on bowel and bladder changes 2 years out, but maybe you will be luckier in that regard also. 🦊

maley2711 profile image
maley2711

If an RO insists on X months of ADT, you can always start the ADT and stop without completing the ADT......your body!!

Aldo62 profile image
Aldo62

what is your PSA?

Something like 20-30% (depending on who you believe) of men who undergo ADT for short term never get their testosterone back. I asked my doc if it was true that 30% never get their T back and he grudgingly admitted it and said he thought it was “only” 20%.

There are some docs who believe it’s better to do rad first and then ADT only if the rad fails.

maley2711 profile image
maley2711 in reply to ElRanchoDePoisonIvy

when I broached the No or Reduced ADT with RT,h is reply was... do it now, or later. However, pretty sure he meant later when RT has failed and PCA has metastasized!!! The claim is that no T somehow makes the cancer cells more susceptible to the RT. Another view is that the ADT impacts micrometastases not seen on scans. If that is actually what is happening, then I suppose that it would work just as well to do ADT after RT......in fact, most is done after, when doing ADT for more than 2-3 months.....eg 12+ months. Bottom line....unfavorable risk men are up the creek(edited for language!!!)

fast_eddie profile image
fast_eddie in reply to ElRanchoDePoisonIvy

I only represent a single data point but I received a six month eligard shot at age 66. My T returned within a few months of the end of that six months. I did develop another problem I had to deal with -- Peyronies. Coincidence? I doubt it. I did find a non-standard cure for that.

vintage42 profile image
vintage42

ElRancho said: "There are some docs who believe it’s better to do rad first and then ADT only if the rad fails."

That happened to me. I had radiation in 2021 and the MO said ADT was not "indicated" at my age 78, so he let me decline it. The radiation failed, and the cancer in the prostate remained and spread. So now I am finally on ADT, the pill form Orgovyx, which seems to have no side effects at all, yet it quickly and dramatically lowered my PSA.

fast_eddie profile image
fast_eddie in reply to vintage42

That's good to hear. I have slowly rising PSA and finisteride (which I call ADT-lite) didn't work for me -- it triggered dental issues. Maybe Orgovyx is in my future. I'll be 74 soon.

vintage42 profile image
vintage42

MontanaMan said: "What are the risks with radiation without ADT?"

The risk is that the cancer will remain and spread. Mine did.

dixiedad profile image
dixiedad

I was diagnosed 10/16/20, I started ADT injections 11/10/20 AFTER I'd called uro's office and bugged them about starting treatment. 45 radiation sessions. I have gynecomastia big time. Boobs, belly, and butt. My center of gravity has changed, balance, etc. Hot flashes, day and night.

BUT...I'm alive and cancer free as far as we can tell. I can live with that (pun intended). I still enjoy life and a few Scotches every evening.

Ask about a bone density scan. ADT can cause bone density loss. I had osteopenia. Taking calcium citrate, vits K and D3, has helped me regain some bone mass. Also weight bearing exercises like biking, walking, weight lifting. I use 13 lb dumbbells and a recumbent stationary bike. Both twice a day.

Good luck.

82 male u.s.

Explorer08 profile image
Explorer08

Tall_Allen’s post is absolutely correct! I had salvage radiation 11 years ago without ADT and that was a gigantic mistake. I’d made the mistake of leaving my care in the hands of a urologist instead of an MO. Once I became better educated I fired my urologist and stuck with my urologic oncologist.

Grandpa4 profile image
Grandpa4

For what is worth I just completed 2 years of ADT an Abiraterone following radiation. I lifted weights twice a week and exercised through biking and pickelball. The only side effect was lack of interest in sex. I am not any weaker than day 1. I had no fatigue. Doctors do not emphasize the need for exercise and weight training enough. The lack of interest in sex is a bit shocking because I always was very interested. For you this is not a problem. It is a side effect for your wife. I was lucky and my wife is not all that interested anyway. I try to make her feel loved in other ways. It increases the chance for cure.

Sandy752 profile image
Sandy752

at age 65 14 years ago I had radiation without ADT (that was standard in Ontario Canada at the time). Gleason was 7 with 10 of 12 samples cancerous. After a little more than 3 years, my PSA had risen 2 about nadir so I went on Lupron and have been on it (no breaks) for 10 years. PSA is currently .39.

SteveTheJ profile image
SteveTheJ

First, don't believe anyone about ADT side effects because your experience will be different. Guaranteed. They read me that list and it's enough to make you want to run out of the room screaming, but...

Second, do believe men and their caregivers when they talk about the effects of the cancer.

Give yourself the best chance of long-term survival. Ditch the fear, it's not going to help. Best of luck.

Horse12888 profile image
Horse12888

As TA says, refusing ADT reduces the probability that the RT will cure you, i.e., kill every cancer cell in your body. Also, in the case that you are not cured, it reduces the period in which your PSA remains undetectable and increases the rate that the PSA increases after that. Now, by how much? That's impossible to say, except by looking at broad averages and trying to fit your precise clinical condition into studies that have been conducted.

It's also impossible to say the nature and severity of SEs you'll experience on ADT. There are, in addition, in addition to fatigue, hot flashes, loss of libido, ED, brain fog, depression etc. imperceptible impacts to your CVS and bones. This means there is no answer to the question: Is the diminution of QoL worth the cost?

You may want to commit to a year and quit after that if you're completely miserable.

If you use Orgovyx your T will recover a few weeks after ADT is over, vs. many months. I would have happily paid a fortune for it had it been available in 2014 when I went through this.

Another point: there is no evidence that 24 months ADT is superior to 18 months, meaning, it seems to me, that NO ONE in your situation (neoadjuvant) should be prescribed a minute more than 18 months.

There is also high-dose transdermal estradiol used instead of LHRH agonists/antagonists. It's not yet FDA approved but it's used extensively around the world. It carries a FAR more tolerable array of SEs. Having experienced Eligard, this is definitely where I'm going if my PSA continues to rise.

Best of luck!

RMontana profile image
RMontana

…that is a very perceptive question. ADT treatment in conjunction with radiation appears to be most effective for a certain class and prognosis of prostate cancer Patient. I had 21 months of ADT treatment, and was not aware of the information I found after the fact in my investigation. Take a look at this study.

healthunlocked.com/active-s...

if you decide to proceed with ADT treatment do so if you will benefit. I did not consider the side effects of ADT, nor were they ever explained. Fortunately, by chance, my disease progression and prognosis matched the decision that I made for best outcomes. This may not be the case for you. If you will benefit from ADT treatment, then you have to understand its side effects. This podcast spells them out in frank, honest and direct terms. But ADT, if necessary, and effective will make a significant Impact on your ability to treat and cure this disease. Just make this decision with your eyes wide open. Take a listen to this podcast

healthunlocked.com/active-s...

if you go to my Posts at my site, there is more available regarding salvage radiation, ADT use, and specifically your ability to regain as much sexual function as you can. I have had some pushback in this area because there are some of our brothers, who for them sexual function is the last thing on their mind.But my point is that sooner or later you cannot escape that concern coming back around and you want to have made the right decisions for the right reasons when it does.

Good luck. Rick.

Atdabeach profile image
Atdabeach

Can't add much here except for my personal experience. I'm 70, now 18 months into a planned 24 months of ADT (Eligard injection every 3 months, abiraterone and prednisone daily). I had 44 sessions of proton beam therapy starting 6 months into ADT. My greatest side effect has been lack of libido, but thankfully I have a very loving and supportive wife. Moderate hot flashes (mostly at night), less energy, but I work out with a trainer 2 days a week to keep up strength. My weight doesn't change much, but I've definitely traded some muscle for fat. My PSA has been undetectable since around the second month. I'm comfortable with my course of treatment, and looking forward to the years to come!

Teacherdude72 profile image
Teacherdude72

Personal experience with long term ADT over 48 months.I read all about the side effects then my pharmacist gave me the same list but with % of occurrence. Few of the bad ones are above 10% and mod much lower.

We have all read about and heard about the Power of Positive Thinking.

But the same applies to negatives: the more you focus on the negative the more likely it will occur.

j-o-h-n profile image
j-o-h-n in reply to Teacherdude72

"the more likely it will occur." Thanks for the ex-wife hint..............

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/19/2024 11:14 PM EST

Teacherdude72 profile image
Teacherdude72 in reply to j-o-h-n

Enjoy your life: it's the only one you have

j-o-h-n profile image
j-o-h-n in reply to Teacherdude72

Me <---- jots down your advice in my remember to jot down list. Thanks....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 01/20/2024 2:29 PM

ron_bucher profile image
ron_bucher

In a forum like this, you are getting biased opinions on treatment alternatives. You're better off asking two independent medical oncologists who have each treated at least a couple hundred prostate cancer patients.

Every case is unique, so what applies to one individual case doesn't directly apply to any other individual case.

Here is a great summary of virtually all standard of care treatments for prostate cancer: cancer.net/cancer-types/pro...

fast_eddie profile image
fast_eddie in reply to ron_bucher

That is a good summary for someone newly dealing with this disease.

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

Scientifically speaking, ADT is a crap shoot........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/19/2024 11:17 PM EST

gamemaster34 profile image
gamemaster34

I had radiation and ADT. The side effects were not that bad for me. I would recommend ADT with radiation.

Tristag profile image
Tristag

Hmmm If the main concern is that testosterone won’t come back, couldn’t testosterone supplement be taken after PSA is down and stable?

fast_eddie profile image
fast_eddie in reply to Tristag

When it comes to prostate cancer, urologists and oncologists tend to consider T augmentation anathema. Good luck finding one who thinks differently.

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