Has any other 4+3 or worse declined ADT after recommendatin for localized Pc-i.e. a negative PMSA? I just finished SBRT on ViewRay at UCLA and I have had a bottle of Orgovyx on my countertop for 3 weeks and I cannot get myself to take it. Far and away, the #1 complaints across all Pc forums is ADT, but the chance of biochemical FREE survival at 36 mos is already 80% -ish +/- depending on Gleason risk without ADT and ADT turns that 80% into 90% - ish but at what I fear to be an extreme impact on quality of life.
I was on TRT before learning of my Pc through PSA levels. When I cold turkey stopped TRT, I was miserable and finally have started to produce my own T again. The idea of taking ADT to chemically castrate myself for 1-2 years sounds worst than salvage radiation.
Can anyone talk me off the ledge here or is my reasoning sound?
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1) My Doc who is rated as one of the best told me ADT was optional for me. My treatment was after RP (salvage radiation). I took Orgovyx because studies I read showed that ADT with Radiation gave a better / higher percentage (+5% I think) chance of a cure.
2) I also thought you were suppose to start ADT weeks before Radiation treatment and continue on through and ever after Radiation treatment? I would get a second opinion before deciding against taking.
3) I agree ADT, even the latest Orgovyx drug, sucked. If you do proceed you need to exercise your Butt off to stave off some of the side effects.
Didn't you say in a previous post that it was reclassified 4+5?
Of course it is your choice but personally I would have at least tried it during the critical time just before irradiation.
Not everyone has bad SEs (it also depends what is important to you). Remember that people with bad side effects are more likely to post.
I have few side effects (I'm also on Abiraterone) the thing that annoys me the most is the maximum weight I lift has gone down about 20% but that is trivial to most people. No fatigue, weight gain, hot flashes or brain fog.
As someone wrote recently, recurrence sucks a lot more than ADT.
I have a 1st opinion of 4+3, a JH second opinion of 4+5, and a third opinion from IU of 4+3 and the first opinion pathologist confirmed his initial 4+3 after I showed him the 4+5. So I call it 4+4 since 90% of the core is 4 anyway. JH says even if 90% is 4 and 9% is 3, they will call it 4+5 if they see even 1% of 5. My decipher is 0.40.
The scoring is debateable - I am just scared to death of ADT.
1-2 years of chemical castration in exchange of 10% less likely recurrence.... I can take the loss in libido, but weight gain and loss of bone density, hot flashes, and depression sounds worse than recurrence- and you will NEVER know if the recurrence is due to not getting the 10% chance benefit of ADT.
All of the SE's you listed can be managed. As for the 10% odds number -- your results will vary especially if you are a candidate for an ARSI (Androgen Receptor Signaling Inhibitor) . Some commonly used ARSIs include:
Abiraterone acetate (AA) [generic -- low cost in USA at least]
JH is the Gold Standard, and there are rules for how to grade - I'm sorry, but deciding for yourself violates the rules. The rules are there because thee Gleason score, as scored per guidelines, correlates with treatment effectiveness.
One year of ADT is a relatively short sentence for a high risk patient like you. Salvage radiation always carries much worse risk of side effects. You have already lost some of the benefit by not taking Orgovyx till now - I hope you let your RO know.
OK! You can always stop it. We all react differently. I am an avid exerciser and had minimal side effects. More side effects from radiation than ADT. Radiation SEs are gone now.
No way out of strength declining about 15 to 20%. Cannot build much muscle without T. The side effect most likely is ED to an extent which varies from person to person. There are some ways to mitigate but possibly cannot eliminate this.
Unless one was quite athletic and in great shape it is very difficult to raise oneself to the level of weight training and physical activity required. That is why I would give a little more pessimistic view. It's the truth from my personal experience.
I understand completely, but then say so the first time. The 'no way out' comment reads quite definitive.
Indeed every man going on ADT should understand this specific challenge well. If I were going on it in poor health I would either get a trainer immediately or think twice about doing it all. Doctors will not tell patients the truth on this matter, and too many think they are in far better shape than then they are.
I was 4+3 and declined ADT, Stampede Trial, three times. I said no nine years ago before my salvage RT and again after. Then after my third treatment, salvage ePLND. One reason was I wanted to give sufficient time post treatment to see how effective it was - based on uPSA nadir. Another reason was I just did not see the evidence ADT is life-time curable. Note - a "chance of biochemical FREE survival at 36 months" was not compelling to me.
Regarding "negative PMSA", my first PSMA, done at 0.093, was negative. Forturnately, the Ferrotran nanoparticle MRI I share about identified multiple suspicious lymph nodes, including two as small as 3 mm.
Had I done ADT after my third treatment, the salvage ePLND, for 1-3 years or whatever, but stopped, and say I was not doing ultrasensitive PSA testing, today I would certainly be <0.1 and thereby <0.2. Seems logical docs would claim the ADT was successful. Some would say I am undetectable. My reality is the the same has been achieved without ADT. This is not to say I will never need ADT - which is why I keep a very close watch on this beast.
Was/is my reasoning sound? I based my decisions on many consultations on two continents and considerable reading. Today, nine years since my RP, seven years next week since my salvage ePLND, no ADT, uPSA holding very low stable 0.03X range. Current liquid blood biopsy NED and imaging to date NED. Next week I have next round of head-to-toe imaging and additional data points to evaluate just how successful immunotherapy has been for my singular metastatic melanoma. This will also give us another look for lingering/advancing prostate cancer.
Hope this helps. All the best with your decisions.
My RO claimed ADT increased effectiveness of the radiation by 20%. I took Eligard and finasteride for 6 months. Hot Flashes, manageable. Not much weight gain but some. Tiredness still continues due to sleep interruptions. Concentration challenges, but don't know if its the lack of sleep, my age (75) or the drug. Breast growth - but I understand that was from the finasteride, which I stopped. Absolutely no libido. But after 6 months its returning as my T returns (which is a very interesting phenomenon - to witness one's interest in the opposite sex grow from ground zero). No question the ADT does a number, but it suppose to. My PSA is .003 - last test. Decisions like this have so many personal factors depending on one's life and what one has to lose and gain.
This is strictly a question prompted by my curiousity.
Is .003 correct? Or possibly a typo?
The reason I ask is that I previously have not seen that low reported by anyone thus far in any forum. If it is correct, where was testing done?
All my tests have been done by Labcorp for many years now. The lowest I am aware of from them for uPSA is <.006. I have received from them <.014 during peak COVID times. I suspected on a fact free basis that they may have had some heavy utilization at that time and perhaps used less sensitive equipment.
I had sbrt at Duke in 2021. Started Orgovyx before the radiation & continued it for 2 yrs. afterwards. My level was intermediate unfavorable. I’m a yr. & 1/2 out from the finish of the adt & my psa is very low. Was the adt fun? No, but I’m an exerciser & I pushed through it. My rationale was if I didn’t use adt and I had a recurrence I would second guess & never forgive myself. My nurse considers me cancer free. 🌝
It is your choice but do so with research. You can read mt profile, i try to keep it up dated. I was on Testosterone treatment for years. Then found out I had cancer. I completed proton radiation and I am on a 3 month Lupron shot. I tried Abiraterone but I could not take it due to it elevating my liver enzymes to much. All treatment have the possibility to certain side effects but not everybody has them. The Lupron (ADT TREATMENT) has given me hot flashed but it is tolerable. It causes muscle lose( Less strength at gym or in daily activities) but it is okay. Loss id testosterone causes fatigue but just man up and push on. My worst issue is body aches. I feel like I am 90 years old at times., but you just have to press thru it. It is all a personal choice. Oh, my sex drive is gone but I still get an erection and still can have sex with my wife. I have what people call dry orgasms but you do what you have to do to keep the spouse happy even tho my sex drive is not there. Do you homework.
I have researched and researched this as much as any layperson. What I perceive from hearing others? Far and away the most complaints about Pc coming from ADT. It is the single most daunting aspect of Pc. Yes, you do get a % boost in biochemical free survival, but what is that percentage? 90% chance of no recurrence with ADT v. 80% chance of no recurrence withOUT? So, what is the cost of that 10%- weight gain, muscle loss, bone density loss, 0 labido, depression, hot flashes, cardiovascular...
I took Orgovyx for 6 months and at the same time I used transdermal estradiol gel to treat hot flashes and osteoporosis expected from the ADT. I never had any hot flashes and my bone mineral density (BMD) increased 10% over a period of 8 months, due to supplementing (and exceeding) the estradiol that was lost due to ADT. I had some mild breast growth, however, which was worth it. No libido, of course, but you get used to that.
You may want to consider getting the Artera.ai analysis done on your biopsy slides. I did, and they wrote a report that said I was one of 2/3 of men who do not benefit from doing ADT. Only 1/3 men benefit from doing ADT, according to their Level 1 evidence.
That said, I opted to go ahead with Orgovyx ADT because I had Stage III PCa.
Everyone has to make their own (informed) decision.
That's where I went. Dr. Valle. Waiting room shows various machines and whether each respective machine is on schedule. Are you on ViewRay or TrueBeam? Figure out how much water to drink 1 hour prior to make sure you have a full bladder but not too full to endure 45 minutes on the machine. Fleet enema 2 hours prior to clear the rectum.
Thanks. Believe I’m ViewRay. Good advice. Others have echoed the same. I’m coming from east coast so minor concerns how I’ll fair flying the day after completion.
Flying was not a problem. I did cry after the last treatment when I stepped outside. I traveled from KY. You don't feel radiation. You will want to pee toward the end and that can be uncomfortable. Where are you staying?
Keep us posted on how it goes. I might undergo treatment with Kishan. I met with him for the first time last week and really liked him. I'm sure you'll do really well!
60 y/o, 4+3 in one sample, PSMA clear, Deciper .55. Had SBRT at MSK and RO said ADT was somewhat optional for me, but that with the Deciper score he was leaning a bit towards adding that. Started about 2 months before SBRT and now on last week of 6-mos of Orgovyx. Gained a bit of weight (8lbs), hot flashes really mess with my sleep, so lots of late morning/afternoon naps for me.
My opinion is that you shouldn’t be swayed against ADT due to a fear of side effects. This is your life. Some context follows though maybe a little long
My diagnosis was 7 years ago when some diagnostic and treatment options were less available than now. My circumstances were different in that with a PSA of 52 and Gleason 4+3 there was a strong case from Uro for RP as primary treatment followed by ADT then radiation after a multi-month period. My first postop uPSA was .06 and I also had visits with Radiation onc and Med Onc. I started bicalutamide shortly thereafter then Lupron shortly after a brief waiting period on bicalutamide.
My first uPSA after a month or so on ADT was already undetectable (PSA<.006). Post op pathology also revealed 1 affected lymph node and seminal vesicle invasion plus confirmed Gleason 4+3. Because of small post op PSA and this subsequent undetectable PSA my Uro suggested I could possibly bypass the pelvic and prostate bed radiation. I liked this because my fear was radiation as my sister had significant difficulty with breast cancer radiation. ADT had not caused any debilitating SEs at all at this point.
My Uro consulted with MO and RO who strongly advocated radiation because of my high risk Stage 4 disease. 39 radiation sessions started a couple months later. No side effects of note from that.
I stayed on ADT for four full years still with no debilitating side effects. A few years ago, I came across a study advocating extended term ADT which also suggested it could bring about a “cure”. I was skeptical of that and discussed with my MO. She obviously is an advocate for cases like mine but thot remission was a much more appropriate word than cure.
The main point is that I would not suggest rejecting ADT out of fear of side effects that may not ever materialize. I had concerns initially too but they were dispelled quickly . There seems to be very well conceived protocols for treatment which I’m glad I didn’t reject
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