ADT, maybe not? Anyone opted out of ADT?

@jmagrina
I know people that have done this, but if you’ve got other aggressive issues, it could make the cancer come back even sooner,

Were any of these things found in the biopsy intraductal, ductal, large cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

@jmagrina

If you do not have any aggressive features such as cribriform glands, IDC, seminal vesicles involvement, EPE and especially if you Decipher score is low, you can have RT without ADT added. Yes, we have members such as @jc76 here that did that with gleaosn 8 and with good results.

@jmagrina, I moved your question to this relevant discussion:
- ADT, maybe not? Anyone opted out of ADT?https://connect.mayoclinic.org/discussion/adt-maybe-not/

Has radiation + ADT been recommended for you? Have you already had radiation?

I elected to have ADT, 6 months. I'm on my last 9 tabs of Orgovyx. I had 28x EBRT also (Varian Trubeam IGRT/VMAT) Go Photons! In these last days, the fatigue seems to be peaking although I am able to get through 45-minute PT sessions. The psychological weight of possibly never having any libido again (I'm 70) has been on my mind. I don't know if anyone could have prepared me for the mental effects of ADT and I have wondered occasionally if I made the right decision. Time will tell. Post-ADT photo attached.

@bob1955 You will know a lot more within 2 months when your ADT should end (significant return of testosterone). So the effective ADT will be at least 7 months. Mine was slightly more than 8.

I have been taking Orgovyx now for 53 days. I finished day 10 of radiation for cancer in my iliac lymph node.I had my prostate removed in 2018 and was diagnosed with 4A metastatic cancer in March. I hate the orgovyx. I spoke to my oncologist and he suggested I could stop after my 33 days of radiation. Thoughts on the drug? Thoughts on stopping? I feel like it has ruined the quality of my life and I will never be the same. Thanks, Jim

@monahanirvingjames
Whether you should stop Orgovyx Depends on the severity of your prostate cancer Diagnosis.

If you are Gleason nine or 10 and have aggressive issues found in your biopsy like the following. intraductal, ductal, large cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.

In that case, you would be much better off continuing Orgovyx For 18 months to two years.

If you are a Gleason 3+4 or 4+3 then a minimal amount of time on it might not make a difference.

Everyone is different. Did you get a decipher score and find out what your chance of reoccurrence is? The higher the chance of reoccurrence the more likely you need ADT for an extended period of time.

I was a Gleason 4+3 and I’ve been on it for eight years. I had surgery and then radiation and I’ve had four reoccurrences total, So far. I have a genetic problem BRCA2, which makes it much more aggressive. In my case, stopping it could be quite detrimental. I have been around 16 years with it so treatment has been beneficial.

Like I say, everyone is different.

@monahanirvingjames Ditto what Jeff posted…I will only add that I understand totally why you want to stop the Orgovyx.
But the ADT significantly weakens the cancer and it makes radiation that much more lethal.
Continuing after radiation has a great impact on those somewhat resistant cells ( we all have them) which did not suffer ENOUGH from the photons.
Depriving them of T is like withholding food from a dying man: if he’s not dead yet, he soon will be!
Ask your RO the absolute minimum duration of ADT he would advise; I think it’s 4 months but not really sure.
Phil

Anecdotally, in my case initially Lupron and currently Orgovyx + Nubeqa, not everyone is debilitated by ADT side effects. Sure I’m fatigued, lacking energy, but that could be partially age related or other issues and meds I’m taking. Nevertheless, I have enough petrol in me to exercise every day, grocery shop, prepare 3 meals a day, and manage all the household paperwork. Making decisions is one of the toughest parts of this. Good luck deciding.

Of course, everyone's case is different. If I had it to do again, I would likely not have taken the minimum, 4 months duration of Orgovyx. Two years after stopping that awful s*** and my hormones are still totally messed up. TGel didn't work, (my T is in the normal range (low end). I just got a prescription for hCG and I'm now considering whether I want to take a med. not covered by insurance that requires me to shoot myself up 3 times per week...and this is not the handy auto injector used for GLP drugs, we're talking real syringes. Sometimes it seems like medicine takes a step forward and two steps back.