Hubby has ?’s ADT with Decipher .43
My husband just started orgovyx last week and now received results of decipher as low risk (barely) Planning on radiation next month. Gleason 9 - EPE- one +margin- clean lymph’s and - PSMA scan. 65 healthy outside of PC had RALP 9/2024 PSA. now 0.15 Dr at Fox Chase Philadelphia said he recommends ADT x 6 months regardless of decipher. So although he has just started the O last week wants feedback if after on ADT do any changes that may have occurred return to pre ADT status? Thanking you all in advance for any input, feedback and advice.
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Hello mimi, I agree with your RO. Your husband had his prostate removed, yet his cancer came back…or never left.
Regardless of the reason, he’s dealing with a persistent cancer which is continuing to grow. When I found myself in the same situation (but 5 years after surgery), I insisted on ADT because everything I read told me that outcomes were better. I did not have a Decipher test, but as you mention, your husband’s is barely in the low zone.
Just ask yourself: ‘How many times do we want to deal with this disease?’ If you can deliver a killing blow now with radiation and ADT, why take the chance that radiation only might not eradicate it and leave behind cancer cells which might be even stronger and more resistant to future treatment?
I did 6 months of Orgovyx, had some manageable side effects, and then recovered quickly after being done with it. Best,
Phil
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7 ReactionsThis article discusses testosterone recovery after ADT (https://www.urotoday.com/conference-highlights/astro-2025/astro-2025-prostate-cancer/163445-astro-2025-the-kinetics-of-testosterone-recovery-after-androgen-deprivation-therapy-implications-for-outcome.html)
Based on this article, a 65 year old man who had six months of ADT has a 35-40% chance of reaching non-hypogonadal levels of testosterone (i.e. at least back to low normal) six months after stopping ADT, 60-70% at 12 months and 80-85% at 18 months. 15-20% never recover.
Supposedly, those who take Orgovyx recover more quickly but I took Orgovyx and it's now a full year later and I still haven't recovered (though one person's experience isn't a representative sample).
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2 ReactionsConsider also a genetic test to see if he has BRCA2, that will give some visibility to whether or not it is truly possible to kill it forever. At 0.15 PSA, even doing a PSMA PET would be difficult to get a sense of where the cancer resides.
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2 ReactionsHey Mimi. I can just tell you what I've had done. After my RP(11/23), my first PSA was .2 and subsequently rose to .9 after a year. I'm gleason 9 with clean lymph nodes. Had a PSMA pet that came back totally clean. Started ADT 2 weeks prior to radiation on 11/24. Last PSA was < .01. I just had my last 6 month shot of Eligard a few weeks ago.
Best of luck to you!!!
Doug
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5 ReactionsWith a Gleason nine and EPE His chance of reoccurrence is pretty high, as you’re finding out since it’s already reoccurred.
Normally, with a Gleason nine ADT is recommended for 24 months. Yes, salvage radiation does make sense, But with a Gleason 9 it is no final solution, Even with the relatively low decipher score.
Obviously, after surgery, something happened that spread the cancer. It’s almost definitely in his bloodstream and will come back. It is true that it can go dormant for many years. I know people with Gleason nine that have gone 20 or 30 years before it came back, But your husband’s case came back Within a year. With proper treatment, he can live many years, If untreated, he could have a short overall survival.
It really seems like You should get a second opinion from a center of excellence. Recommending only six months of ADT is really fishy. I’m pretty sure NCCN guidelines would call for him to not only be on ADT but an ARSI since his cancer has already come back so quickly.
Has your husband had any genetic testing? Is there cancer in his family?
Have you had hereditary genetic testing? Has it been offered to you by a doctor? You can get it done free with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
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Prostatecancerpromise.org
If genetic problems are found there are drugs specifically for that so it is a good thing to know. Some genetic problems can cause Pluvicto Not to work well, So it’s good to know if those issues exist.
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4 ReactionsThank you for your response and feedback. I truly appreciate your time, knowledge and sharing of your experience. He has a follow up appointment to review the results of the genetic testing. From what I can tell he is positive for Brca1 Would Fox Chase Chase Cancer Center not be considered a center of excellence? Also do any of the physical changes return to normal after ADT? Thx again.
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1 Reaction@dpayton thank you and best wishes for the best results!
I truly appreciate all of your responses and additional information.. Thanks again!
@mimii24
BRCA1 and BRCA2 are not the only important genetic issues.
A few more are RB1, PTEN, TP53, ATM, Lynch Syndrome and there are many more significant ones.
Did they find anything in his genetic test? Some people do come up with nothing.
You then want to have somatic testing, which can find genetic issues that occur in your cancer metastasis. Some people have BRCA2 in their metastasis, but it’s not hereditary.
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2 Reactions@mimii24
Oops. I misread your comments about BRCA.
Very seldom find people with the BRCA1. It usually means the cancer is going to be more aggressive and with an increased chance of reoccurrence. Was that information included when your decipher score was requested? That may have Made a difference in the number they came up with.
Has anybody discussed using a PARP inhibitor early? There were some studies that showed there were benefits to it. I will take it when what I am on now stops working. The thing is after all these years, they say it will work a shorter time than if I took it early on.
I have BRCA2 And it took 3 1/2 years after surgery before my cancer came back again. I then had salvage radiation when my PSA hit .2. 2 1/2 years later, it came back again. I’m almost 16 years past diagnosis, had 4 total reoccurrences, Had many different drugs to take, the last 2 I’m on are Orgovyx and Darolutamide, Which have kept me undetectable for almost 24 months.
Yes, Fox Chase is a center of excellence, but I am real puzzled as to why they are not having him on ADT and an ARSI after a reoccurrence. It never hurts to get a second opinion,. I’ve been on them for eight years total after reoccurrence. BRCA1 is almost going to guarantee that it’s coming back. In my case, if I even reduce the amount of ARSI I am taking, my PSA starts rising immediately. I was on Zytiga for 2 1/2 years. I dropped down from four pills a day to three pills to try to help with brain fog, In 18 days, my PSA went from .2 to 1. That’s from just reducing the ARSI, A fivefold increase in 18 days.
You don’t want to be on ADT alone for too long, That can cause him to become castrate resistant. If the ARSI is included it really extends the amount of time it takes. I’ve been castrate resistant for six years. Mean survival after becoming castrate resistant is 2 years.
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