ADT, maybe not? Anyone opted out of ADT?

@jc76 I received a copy of the results directly from Decipher. My high range number was 0.84 which led to Decipher recommending a multi-modal treatment plan (radiation/surgery plus ADT). My RO disagreed with that plan and convinced me that ADT was not necessary or desirable. So far, he seems to have been right.

@dgd1953
I refused Orgovyx at this time because of co-morbidities. For example: If you have any heart conditions, the result could be death by heart attack, stroke, atrial fibrillation, or arrhythmia. If you have chronic kidney disease, it will speed the decline. It will worsen bone density. It can cause or worsen gynecomastia. Several specialists did not know any of this. You must do your own research. You can find good answers in a few minutes using Perplexity or other AI search tools.

@dgd1953 What was the reason for disagreeing with the Decipher score? That’s a pretty high score to just brush off.
Unless you had severe comorbidities ADT is not dangerous short term.
Orgovyx would have been better than Lupron - I will go along with that.
Phil

This is helpful to know @jc76. I decided against ADT although that was recommended. I was graded a 3+4 unfavourable with one possible bone metastasis (equivocal finding on PSMA scan). I opted for radiation alone for prostate and possible met. One treatment left. I’ve read and heard about additional ways to assess risk but unfortunately none were easily accessible to me. There were several things that suggested to me that my cancer might be the more indolent type and I could risk deferring ADT. But it would’ve been nice to have some confirmation like you received!

@heavyphil He didn’t disagree with the score, but rather with the need for ADT. He emphasized the importance of testosterone for different bodily functions especially cardiovascular health. He was also of the opinion that the benefits of ADT were small and not worth the accompanying negative QOL effects. My urologist initially planned to give me ADT injections, but changed his mind after consulting with my RO. Were they right? So far, so good. But time will tell.

I know of two senior friends who have refused ADT, one after RT (27 treatments) and the other after RP (prostatectomy), then RT (40 treatments when PSA kept rising after RP) and experiencing one dose of Lupron. The latter said, "I'll never take another shot; I'll die of prostate cancer," citing the severity of side effects. I will have my first anniversary of ADT (Orgovyx) Christmas Eve, and I freely admit that the side effects are significant. I was diagnosed with lesions in the prostate and in two adjacent lymph nodes. I had 44 RT (radiation treatments) but no surgery. My oncologists (first and second opinion) are agreeable with my stopping ADT at 18 months, next June. I'll be saying prayers that my PSA stays low and testosterone returns reasonably well. PSA will be monitored every three months for a couple of years then at six months intervals afterward, if I understand correctly. I'm 74.

@dgd1953 Hi I read your post and found it interesting as I am struggling with the ADT. I rec. luprolide in October 21 I believe, really no bad effects once in a blue a but warm goes away fast, tiredness a bit but nothing else out of norm maybe a bit spaced a bit but noticed I’m gained a bit of weight. I go to gym every other day, no strict diet but eat healthy lots of greens etc. I had a Bout 2013 with Steven’s Johnson’s Syndrome (SJS) caused by Bactrin. My urologist knows and I informed him of my fear, he says it’s low risk but literature says to BEWARE! So I’m not sure I will proceed with my next Lupron in Jan 21. I’m supposed to start VMAT and Brachy in Jan. I’m really scared of side effects and am seeking to do PHOTON IN ATLANTA if my insurance approves it. They reviews my records and say I qualify but need to go for in house evaluation too. I live in Puerto Rico- photon is not available yet, I’m running around lost..
You say your urologist talked to your RO and said no ADT necessary. That seems like good communication. Did he say why? Do you know? As I understand it isn’t it necessary at least before starting radiation? I read so many ppl on adt for years to keep Ca under control even thou it returns, sadly.. sorry for the long story maybe you or someone has an insight for me.. running scared and frustrated
Thank you

@jime51

I am in the same boat as your friend who had severe side effects. I stopped Lupron at 4 months and believe another month would have killed me. It took 4 months after treatment stopped before the side effects began to subside. At 5 months they are about 50% of what they were with 24/7 sweats and headaches plus brain fog, frequent urination, and joint and muscle pain. I exercise a lot for an 83-year-old and can do more than most men my age. My PSA at 1 month and 4 months were < 0.1 while testosterone were 6.9 and 8.7 respectively. I was Stage T3b, PSA 11.0, and with Gleasons of three 3+4 and one 4+ 4 out of 12 samples. I will get my third PSA test in a month.

@pesquallie I'm glad your condition is improving. I'm told that a significant advantage of oral ADT is that the effects dissipate faster when discontinued, but I've had every side the manufacturer lists, plus one or two. My relatives usually pass in our 70s, so it's questionable what my extent and quality of life will be once done with this treatment. I'm this far in, so I'll continue, and at least this disease has gotten me into weight training at the "Y."

@dgd1953 A 3+4 case usually does not get prescribed ADT. However, I was a 3+4 like you but with a Decipher 0.81, which is a little less than your 0.84 score. I can tell you that most RO's believe that a 3+4 case with a high Decipher score believe that ADT is needed for safe treatment and low odds of recurrence. My local RO at Baylor Scott and White in College Station, TX believed 2 years was necessary! A visiting RO said that he would only prescribe 6 months for my case. I then sought more advice at MD Anderson in Houston and three RO's there all agreed that one year of ADT was best for my case.

Based on my experience with 5 RO's and three of them from a renowned Center of Excellence, it seems your RO is an outlier with his opinion on ADT not being beneficial for a 3+4 case with a high Decipher score. Hopefully, your luck will hold on this and you will never have a recurrence.