Treatment options: radiation without ADT?

Posted by jcultra @jcultra, Jul 2 6:11pm

Researching treatment options.
79 yr old, sexually active, good health
Gleason 4+3, PSA 12.91 (tripled within last yr), Testosterone 435, PSMA PetScan No metastases, Decipher .95
Radiation oncologist recommended radiation with 6 months ADT.
Is there data or anyone who has not taken the ADT?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

You have received a great deal of input...

Here's my clinical history, 10+ years now, seven off treatment, three on.

I'm 68-1/2, so still have expectations of 10-15 years minimum, maybe more...?

So, my decision are based on that expectancy, the clinical history of my PCa and current clinical data such as PSADT, PSAV, imaging...al; my data says high risk - GS, GG, time to BCR, PSADT and PSAV...so, my decisions are based on my risk.

There is not a wrong decision you can make.

You could do nothing. It is possible that it could be eight years or so before your PCa starts to present problems, you'd be 87, hopefully! You likely could deal with it then, who knows what advances will be made by then, certainly we are making progress in more individualized and precision treatments using genomics.

You could choose MDT only, that can slow down your PCa, unlikely a cure because of system or micro-metastatic PCa. I've had three different radiation treatments, SRT, WPLN and SBRT, 69 total, 155Gya. Zero side effects, then again, I have a pretty damn good radiologist. The use of metastasis-directed therapy (MDT) is rapidly increasing in the setting of oligometastases. STOMP and ORIOLE, the only two prospective trials of stereotactic ablative radiation versus observation in metachronous oligometastatic castration-sensitive prostate cancer (omCSPC), demonstrated that MDT, as compared with observation, prolong androgen deprivation–free survival1 and progression-free survival (PFS)

You could choose MDT and short term ADT, say Orgovyx. I finished 12 months of it in April, July T was 312. When I did 18 months of Lupron from Jan 17-May 18, (the last shot was May 18, 90 days soroughly July when it would have started to clear) T recovered to 135 in October, 400+ by Feb and by the time I started treatment in April 23, 600+

Why did my T recover, who knows, there is some discussion of the role exercise plays in it. I exercise pretty much every day, active vacations.

While on ADT, I had the standard side effects, mild fatigue, muscle and joint stiffness, hot flashes and genitalia shrinkage. Annoying but not life altering.

...data from the HERO trial... we see a rapid decrease in testosterone with relugolix. The day four mean T-level was down to 38 nanograms per deciliter. You can see here a rapid decline for relugolix with a more gradual decline up to about five weeks for leuprolide before it reached castrate levels...testosterone recovery, which is also important. The percentage of patients with testosterone greater than 280 nanograms per deciliter at 90 days was 54% for relugolix and 3% for leuprolide, which was statistically significant

54% sounds great, unless you're in the 46% group! The 3% clearly sucks.

Kevin

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@kujhawk1978

You have received a great deal of input...

Here's my clinical history, 10+ years now, seven off treatment, three on.

I'm 68-1/2, so still have expectations of 10-15 years minimum, maybe more...?

So, my decision are based on that expectancy, the clinical history of my PCa and current clinical data such as PSADT, PSAV, imaging...al; my data says high risk - GS, GG, time to BCR, PSADT and PSAV...so, my decisions are based on my risk.

There is not a wrong decision you can make.

You could do nothing. It is possible that it could be eight years or so before your PCa starts to present problems, you'd be 87, hopefully! You likely could deal with it then, who knows what advances will be made by then, certainly we are making progress in more individualized and precision treatments using genomics.

You could choose MDT only, that can slow down your PCa, unlikely a cure because of system or micro-metastatic PCa. I've had three different radiation treatments, SRT, WPLN and SBRT, 69 total, 155Gya. Zero side effects, then again, I have a pretty damn good radiologist. The use of metastasis-directed therapy (MDT) is rapidly increasing in the setting of oligometastases. STOMP and ORIOLE, the only two prospective trials of stereotactic ablative radiation versus observation in metachronous oligometastatic castration-sensitive prostate cancer (omCSPC), demonstrated that MDT, as compared with observation, prolong androgen deprivation–free survival1 and progression-free survival (PFS)

You could choose MDT and short term ADT, say Orgovyx. I finished 12 months of it in April, July T was 312. When I did 18 months of Lupron from Jan 17-May 18, (the last shot was May 18, 90 days soroughly July when it would have started to clear) T recovered to 135 in October, 400+ by Feb and by the time I started treatment in April 23, 600+

Why did my T recover, who knows, there is some discussion of the role exercise plays in it. I exercise pretty much every day, active vacations.

While on ADT, I had the standard side effects, mild fatigue, muscle and joint stiffness, hot flashes and genitalia shrinkage. Annoying but not life altering.

...data from the HERO trial... we see a rapid decrease in testosterone with relugolix. The day four mean T-level was down to 38 nanograms per deciliter. You can see here a rapid decline for relugolix with a more gradual decline up to about five weeks for leuprolide before it reached castrate levels...testosterone recovery, which is also important. The percentage of patients with testosterone greater than 280 nanograms per deciliter at 90 days was 54% for relugolix and 3% for leuprolide, which was statistically significant

54% sounds great, unless you're in the 46% group! The 3% clearly sucks.

Kevin

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Congratulations on your outcome. For readers of this thread, though, please note that if your baseline T is under 409, the 54% drops to 37%, and if you're over 65, T recovery is slower. See Testosterone Recovery for Relugolix, etc., in the 12/23/23 European Urology Oncology publication.

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@groucho

I strongly suggest that before undergoing ADT as an adjunct to radiation therapy, a patient should watch an unvarnished October 2019 lecture (available online) by Dr. John Mulhall of Sloan Kettering regarding the uncertainty of testosterone recovery after ADT. His theme was: What they (treating ROs and urologists) don't tell you about what you're getting into. Unfortunately, I didn't see it until after I completed my 6 month course of Orgovyx. Fifteen months later, I'm still light-headed and have balance issues. My experience coincides with Dr. Mulhall's observation that ROs typically don't have a real discussion with their patients about the side effects and aftereffects of ADT. I thought I had thoroughly researched the risks and benefits, but I focused too much on the laundry list of specific side effects rather than the longer-term ramifications of testosterone suppression. In my opinion, my RO's cursory, at best, explanation of the risks and benefits was unconscionable particularly since I had emphasized at the outset that my treatment priority was quality of life rather than longevity

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yes I did not ever get a bottom line response from a radiologist , he seemed to do the same thing for everyone,,,,,and for a real disapointing they wanted me to include casodex . That is by far much worse and way outdated .I had no idea how bad those side effects were. Something out of a 30 years old bad dream.

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@philipsnowdon

Hello Mikewo,
I am similar to you. I am turning 70 in a month and have been on TRT for the past 13 years. Unfortunately, I’ve also been seriously debilitated from CHRONIC FATIGUE SYNDROME, FIBROMYALGIA and CHIARI MALFORMATION for the past 33 years. When I was diagnosed with Prostate Cancer in August of 2023, I had my RALP performed in October of 2023. As a result, I had to discontinue my TRT 1 month prior to my surgery and 4 months following it. I was a total mess and barely surviving. My Total Testosterone goes down to 20 if I discontinue it. Thats pretty much medically castrated right there. I feel like death and nothing in my life resembles living what so ever. Therefore, radiation and Lupron injections were never going to be my first choice to treat my Prostate Cancer. Within a week of resuming my TRT, I was feeling like a human being again. Cancer or no cancer, if your HYPOGONADISM is so bad and requires TRT, that’s what you should do if it means actually living and maintaining some quality of life or simply walking around as one of the “living dead!”
I can utilize radiation therapy if I need it in case my cancer returns. However, I won’t be discontinuing my TRT. Some cases are more unique than others. To simply stuff men into a certain kind of mold of “one size fits all” is simply barbaric and a very uncreative and reveals itself as a severiously severe lack of any forwarded thinking regarding updated treatment styles and options.
The studies that were done in the 1940’s which indicated that TRT following a prostatectomy were dangerous and a precursor to the return of a Biological return of cancer were extremely limited and used rats as medical subjects.
All the most resent research done from the early 2000’s to our current timeframe have overwhelmingly “debunked” this severely inaccurate and outdated information.
Physicians are now recommending placing prostate cancer surgery patients on TRT to increase their rate and overall quality of recovery following prostate surgery. Everybody is an individual and should be treated like one. Follow your labs and adjust accordingly. My PSA was < 0.025 the day after my Prostatectomy. My PSA has remained steady at < 0.014 since a week after my surgery, late October of 2023 through to today, mid July of 2024. I get it checked on the average of every 2 months. I try to keep my Total Testosterone between 550-700.
With my TRT I can function in life although it’s far from normal overall compared to most people. However, without TRT, I am pretty much already dead. Completely bedridden and home confined while feeling near death. It’s not even a choice for me. “ITS A NECESSITY!”
Best wishes,
Phil

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20 is really low and better than Lupron. My radiation oncologist at Mayo didn't believe me when I said I didn't need and would not take his shot. Tested 3 times all at 12 ng/dl and it lasted at least 8 months when I went back on TRT. I keep mine at about 350 to 400 because my HCT and HGB get too high if I go higher and I donate blood every 56 days to keep those numbers in check. It is no big deal as I have been donating forever starting at blood drives at work before retiring. Like you said, "walking dead". I use the gel, so I don't get the huge ups and downs. My PSA is still undetectable at 15 months. I will hit 75 in September so if I get 15 years that makes me 90 and I sure don't want to wind up in a memory care unit for dementia. My sister works in one and says you don't want to wind up in one.

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My diagnosis read close to yours including the PSMA.
I'm 74 and my treatment was just completed in December 2023.
I did 5 treatment of True Beam SBRT with a space Oar and fiducials.
I also did just 6 months on Orgovyx(ADT Pill). One before and 5 after.
3 Month labs PSA 0.05 Test 240
6 Month Lab PSA 0.05 Test 345
Both the Orgovyx and SBRT were a piece of cake. More anxiety than anything else.
Don't let anyone force you into anything. YOU are the patient and YOU have the final decision. Continue to ask questions until you are satisfied. I did find this site to be excellent.
Good Luck with your treatment

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@pbmurf

My diagnosis read close to yours including the PSMA.
I'm 74 and my treatment was just completed in December 2023.
I did 5 treatment of True Beam SBRT with a space Oar and fiducials.
I also did just 6 months on Orgovyx(ADT Pill). One before and 5 after.
3 Month labs PSA 0.05 Test 240
6 Month Lab PSA 0.05 Test 345
Both the Orgovyx and SBRT were a piece of cake. More anxiety than anything else.
Don't let anyone force you into anything. YOU are the patient and YOU have the final decision. Continue to ask questions until you are satisfied. I did find this site to be excellent.
Good Luck with your treatment

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Thanks pbmurf!
I’m moving ahead with very similar plan.

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@pbmurf

My diagnosis read close to yours including the PSMA.
I'm 74 and my treatment was just completed in December 2023.
I did 5 treatment of True Beam SBRT with a space Oar and fiducials.
I also did just 6 months on Orgovyx(ADT Pill). One before and 5 after.
3 Month labs PSA 0.05 Test 240
6 Month Lab PSA 0.05 Test 345
Both the Orgovyx and SBRT were a piece of cake. More anxiety than anything else.
Don't let anyone force you into anything. YOU are the patient and YOU have the final decision. Continue to ask questions until you are satisfied. I did find this site to be excellent.
Good Luck with your treatment

Jump to this post

@pbmurf
Agree you are the patient and you decide. Not happy, not getting questions answered go to a institution that does.

REPLY
@pbmurf

My diagnosis read close to yours including the PSMA.
I'm 74 and my treatment was just completed in December 2023.
I did 5 treatment of True Beam SBRT with a space Oar and fiducials.
I also did just 6 months on Orgovyx(ADT Pill). One before and 5 after.
3 Month labs PSA 0.05 Test 240
6 Month Lab PSA 0.05 Test 345
Both the Orgovyx and SBRT were a piece of cake. More anxiety than anything else.
Don't let anyone force you into anything. YOU are the patient and YOU have the final decision. Continue to ask questions until you are satisfied. I did find this site to be excellent.
Good Luck with your treatment

Jump to this post

Great to hear the treatment went well. I'm seeing similar results with IMRT after 3 months. Lost ground on pre-Rad continence, 6 weeks of Gemtesa got me back on track. Best Regards.

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