ADT, maybe not?

@bob1955
I did not have ADT. It was originally recommended per my Gleason Score but my Decipher showed a low risk not intermediate risk and that recommnedation was removed by my R/Os. So the decision to take it or not take it was gladly not applicable.

Did you have the Decipher test? It is unlike Gleason which is subjective to a genetic type test more precise to see the risk level of your prostate cancer. Your PSMA will be important also in decision on ADT. My PSMA was negative along with a bone scan which was negative.

Some posters will tolerate ADT quite well and others will not. You really don't know which one you will fit into as we are all different in how we respond to drugs and ADT. So comes down to your personal decision of what is best for you not what others did.

I agree with @bob1955 that going on ADT is a personal decision. I am currently undergoing salvage radiation therapy for a local recurrence of prostate cancer (prostatectomy ten years ago), but I declined ADT even though it was recommended by two oncologists (my current RO left the decision up to me). My particular circumstances of the recurrence (intermediate risk, PSA of 0.11 that was stable for 3 months, ten years of undetectable PSA since RP, no PSMA PET scan evidence of metastasis beyond the prostate bed, palpable nodule in the prostate bed that lit up on PET scan, age 73) lead me to conclude that the risks of ADT outweighed the benefits. Even the current NCCN guidelines recommended radiation therapy with ADT as a +/- option in my case. There are medical studies that have demonstrated that men with recurrences with low PSA (like me) may actually be harmed by the side effects of ADT, without any benefit to survival. So, my decision, which was informed by reading a lot of medical literature and seeking opinions pro and con, was to pass on the ADT. Someone else may have reached a different conclusion.

Two additional thoughts: deciding about ADT, and all my therapies, required reflecting on my life goals and priorities. all of which may change with time. Not an easy process, but it has been important to me that I make informed decisions that I can live (or die) with. Second, I was firm with the oncologists who were pro-ADT and pushed back with hard questions. I respected their opinions, but they also came to respect mine. You are your own best advocate, whatever way you decide to go.

Best wishes,
M

I’ve been on it for almost 9 years. I am 78 now. I’ve never had fatigue from it, but got terrible hot flashes which are pretty much gone now.

I do run on the track twice a day 1 mile, I go to the gym three times a week to keep my muscles in shape so I can get off the floor without assistance.

I’ve been on bone strengtheners for the last eight years.

Nobody would have any idea I am on these drugs. They are saving my life and they are worth it.

I have a similar situation with Gleason 3+4 and 4+3 (intermediate unfavorable), age 74, PSMA indicating no current evidence of spread and planning SBRT 5 sessions coming up soon. Had an Artera test that indicated "low risk" and am waiting for the Decipher results which I believe will have additional useful info. I have been given the option of not having ADT and am trying to sort it all out in the next few days. So any answers to Bob1955 will be helpful to me, as well!

Helps to shrink tumors and any mets. Supports radiation doing its thing. For some it is life extending. It's also comforting know that while on castrate sensitive ADT the cancer is sleeping. It doesn't have to be forever. For me, 18 months.

Lots of different situations. Like @jeffmarc I have stage 4 prostate cancer, so the decision is somewhat simplified: I can either stay on ADT (and, ideally, ARSI) or die prematurely. As a result, I've never worried about it: better to be here with the side-effects than not here at all.

For those with earlier-stage diagnoses, I understand how it can be a tricky choice.

@daveslp
I had the same Gleason scores as you. My original treatment plan was radiation with hormone treatments. When the Decipher came back it came in at low risk not intermediate as biopsies had indicated.

So I did not have ADT or any hormone treatment. My treatment plan without the ADT came from Mayo R/O, UFHPTI R/O, and my Mayo PCP all saying the Decipher test removed that as a recommendation.

It has to be a personal decision knowing the side affects of hormone treatments. And from everything posted here on MCC there will be side affects. What I see is the degree of them. What I also see is the mental aspect of knowing you are getting a hormone shown to stop or at least hinder the growth of the cancer and will benefit regardless of radiation or RP.

For me at 76 with Heart Failure I don't think I would have done well and was glad when the recomendation was removed from my treatment plan. When my diagnosis was made I had a 3.75 PSA. Now 2.5 years later my PSa is .12

I do have to be careful as during radiation treatments I was told to stop my long distance bike riding (25 miles) as could irriate prostate. I have slowly inched my way back up to the 20 miles per hour but boy my genitals, butt are not happy I did.

@daveslp you have to make it a deceison of what is best for you. I responded as you had the same initial risk level you had intermediate. But then my Decipher came back low risk. Hopefully your Decipher will be the same low risk and that should help you decide.

I see you planning to do SBRT 5 sessions. I assume that is photon radiation. I had 30 rounds of proton radiation done at UFHPTI

@jc76

Thanks, so much, JC for sharing your experience. I hope to speak with my radiation oncologist this week to better understand the pros/cons of ADT. Just got back the Decipher results and those are "high risk" versus "low risk" on the Artera.

I am 83 years old, Gleason score 4 + 3, PSA 20.1. The seminal vessel is also affected. Mayo recommended both IMRT and 6 months of ADT. Lewis Cancer center in Savannah (where I live) had the same recommendations. Mayo said I could eliminate the ADT but the long term results would not be as effective if I eliminated the ADT. As of this date, the effects of the ADT have not been too bad...a few night sweats and tired in the afternoon. I still work out every morning and believe this has really helped with minimizing the bad effects. Good luck to you .

@daveslp I finished 5 SBRT sessions on 3 October and got my first injection of ADT medication (Leuprolide/Camcevi) on 6 October. I'm slated for 3 years on ADT, injections each 6 months, PSA checks every 3 months. My Gleason was 4+4, along with several 4+3 and 3+4. So far I've not noticed any significant side effects to the ADT. I walk an hour a day or stationary bike 30 minutes. I also do core each day and some light weight lifting every other day. I turn 69 in December.

On the SBRT treatment, I started having extreme burning during urination after the third SBRT session, ibuprofen helped a bit, AZO did not. The burning continued until about 10 days after the final SBRT session. At present urination is only mildly uncomfortable.
Good luck with all of this.