Treatment options: radiation without ADT?

@clyman - so sorry about the ankle! It’s always something, right? Hopefully it’s just a minor fracture and your summer won’t be too messed up! Much Love!!
Phil

Thanks Phil! Bill (clyman)

You don't say how old you are. There is a study about ADT not making much difference in Biochemical or overall survival if you are over 70. I was one core at 4-3 and two at 3-4 and was over 73.

I was 73 with 4-3 in two cores and 3-4 in two others all from the same area as my 7mm lesion. 4 out of 30 cores positive with a 2,9 PSA because of my 120 gram prostate. I am a weird case as my radiation oncologist also want 30 proton treatments and 6 months of Lupron. I have been on TRT since 2008 and knew from previous labs that if I stopped my testosterone treatments (gel) I go castrate in three days. He did not believe me so I refused his shot. He had me tested in a few weeks and I was at 12 ng/dl which is lower than Lupron promises, and I maintained it for at least 8 months till I went back on my TRT. But I was only hedging my bets as this study shows that for a man over 70 like you it makes no difference in biochemical control or overall survival. Google this study "Radiotherapy with or without androgen deprivation therapy in intermediate risk prostate cancer". Another study is "proton Beam Therapy for Intermediate or High-Risk Prostate Cancer: An Institutional Prospective Cohort Study". I did not do his 20 proton treatments and six months of Lupron but did the fire Proton treatments at Mayo Phoenix. Had a little minor rectal bleeding at days 160 to 210 even with the SpaceOar Gel. I also started dribbling a little urine on day 310 so I started Kegels, and they seem to be helping to stop the drops. Good luck in your choice but remember we are in our 70's and will not live forever. I figured if I get 15 years that makes me 89. Do I want to die in a nursing home?

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

Hi, had a Prostatectomy 2008; PSA slowly climbed up and in 2022 was .240 which is BCR. PSMA was neg. Had 38 Rad Treatments to the Prostate Bed, which Rad Onc figured the recurrence was coming from. Both Urologist and Rad Onc suggested NO ADT. Since then, my PSA has been 0.020. Next one in Sept, every 6 months.

Sorry - just saw this… I will be 70 in 2 mos. Last week’s MRI negative - still waiting for result of PSMA.
My 4+3 was a doozy - entire left lobe 70-90% cancerous with peri neural invasion. Middle was gone due to previous green light laser and right lobe totally cancer free.
Surgical path clean with no evidence of spread.

Yeah, you were evidently much worse than I. My lesion was only 7 mm and only 60% of the core was a 7 Gleason. The five proton treatments seem to have worked great as my 3-month, 9 month, and 14th month PSA's were all undetectable.

I too have questions. 77 years old just beginning to recover from 32 radiations along with 2 years of lupron. I personally feel that lupron is the worst possible option for a 77 years old. Makes a mess out of your overall health and I have not recovered from the first two year go around. The terrible radiologist , in his final progress notes . " i was unable to properly radiates a very small area. '" Turns out his original work was well done, he just did not havd access to the up to date procedures. I have discussed this with the Mayo Clinic , they had all my medical information there along with the first PSMA Scan. Their response was ,hey this happens. They seemed to be perfectly confident that all the initial ADT was enough. I am going to go along with brief stereotactic salvage radiography . It would be very difficult to convince me to undergo the terrible hormonal effects , considering I have just started to feel like a human again, at 77 years old . I cycle again, lift light weights and in general feel very healthy again. Sure there are lingering issues, muscle and strength loss that I find can be worked out with a careful model of aerobic activity. I am an avid cyclist .

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