Treatment options: radiation without ADT?
Researching treatment options.
79 yr old, sexually active, good health
Gleason 4+3, PSA 12.91 (tripled within last yr), Testosterone 435, PSMA PetScan No metastases, Decipher .95
Radiation oncologist recommended radiation with 6 months ADT.
Is there data or anyone who has not taken the ADT?
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IMRT of 28 running, plus ADT one year ago. ADT lasted only 3 months and being completely stopped after IMRT due to huge suppression on my immune system. PSA has been: 0.02, 0.06, 0.17 and 0.14
78 years old 3+3 PCa
Everything OK now.
Hopefully your PSA continues to drop, but the fact that it went from .02 to .17 then .14 Means it needs to be followed carefully. Since you hit .02 the guidelines say that unless it hits 2.02 you really don’t need to do anything. Some doctors don’t feel that way and want to treat it before it gets that high. PSA can bounce around some usually that’s before It hits the actual bottom which for you was .02 apparently
Did you ever get a decipher test? That might tell you, whether or not there is a chance that it could be coming back.
ADT has been the worst part of my PCa trip-modal treatment by far. I had only 4 months of Orgovyx that completed almost 2 years ago, however, I still deal with 4 major side effects:
1. Hot Flashes: as bad now as they have ever been
2. Visceral/Belly Fat: with a healthy diet and daily exercise, I have 8-10 lbs. of belly fat
3. Strength/Energy: I can't run distances like I could. For example, I completed a 5k while first taking Orgovx. I take more naps now due to fatigue.
4. ED: I have about 60% erections. I tried Cialis and Viagra that improved my situation, but, not enough to keep me taking them permanently.
My many Drs. Urology and RO team seem clueless about why I'm having these issues and certainly offer no effective treatments. I tired T Gel and my Testosterone has recovered to normal levels. I have almost stopped T Gel completely, and am producing normal T levels naturally.
I was completely unprepared for these awful ORGOVYX side effects that seem like they will be lifelong. To make a point to my RO, I told him that having a pot belly and a limp d*** was not something that I hoped for...his response was, 'yeah, I don't get a lot of call for that'.
I have been on ADT for nine years and recently found something that really makes a difference when I go out to the track twice a day. I can now jog around the track the whole time as long as I take my electrolytes before I go. I’m drinking a liter of electrolytes all at once within 10 or 15 minutes of when I head out. A couple of days that I didn’t drink electrolytes I could jog about halfway around the track and then walk halfway around the track, Not enough energy to keep jogging,.. I drink it just before my 11 o’clock run And it’s still works for my 2 o’clock run.
I’m using a simple WHO electrolyte drink. 1 Liter of water, 2 level tablespoons of sugar And a level Half teaspoon of salt. Really surprised me how much energy it gives me.
It is simple to make, and I can drink it down very quickly within five minutes. If I put it in the refrigerator and make it colder, I cannot drink it down fast. It’s very hard to drink it.. Just use the tapwater right out of the sink and It’s temperature is just right.
I had terrible hot flashes at times with ADT. I found that getting a depo-provera Shot every three months made a major difference. My oncologist is the one that recommended I try it . It actually completely stopped my constant hot flashes when I first had ADT nine years ago. I had the shot about a month ago and it has really reduced the intensity and number of hot flashes. I also use an Embrlabs.com Wave 2 device To manage the hot flashes I get day and night. There is a night mode which sends cold waves through your arm and almost completely stops the nightly hot flashes. You can use the other button to stop or reduce the intensity of the hot flashes you get during the day. They do have a 60 day moneyback guarantee.
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2 ReactionsMy experience is very close to yours. I had a Gleason 8, no EPE, no cribiform. I start my 5 sessions of Proton Therapy at Mayo tomorrow morning. I did not have a Decipher test. I am going with ADT because I am already on it. I went on it to delay treatment in order to go on a trip for 3 months and to give me time to consider my options. I will continue Orgovyx as I’ve tolerated it well. But am considering doing it intermittently so I can travel again this summer hopefully with less fatigue. Thanks for your posting!
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1 ReactionI posted this recently on your question
Anyone wishing to get a better handle on whether and when (if ever) he should use ADT, I suggest considering enrolling this clinical trial.NCT05588128
It's supervised by Dr. Ravi Madan, NIH Senior Clinician and Director of NIH's prostate cancer research
I'll let him speak for himself through his recent interview.
https://www.urotoday.com/categories-media/2757-urology-tube-video-channels/asco-2025-vl/4947-psma-pet-in-biochemical-recurrence-when-to-treat-vs-when-to-wait-ravi-madan.html
But in a nutshell the clinical trial chiefly examines this issue: PSMA PET scans allow early detection of prostate cancer and BCR. But simply because we can see it, does that mean we should always go after it hammer and tong? The study by following the natural history or development of the cancer without ADT endeavors to determine which cancers require early intervention and which don't. Blood tests including PSA, circulating tumor cells, ctRNa etc are collected every three months and PSMA-PETs are done every 6 months to keep track of developments. So they watch you like a hawk and they know when to blow the whistle to get you out of the pool. In my case, they recently put me on enzalutamide for three months while keeping in this trial also putting me in another. The trial allows for metastases directed therapy and even 6 months of ADT. In all cases your regular physician remains the lead dog on the sled and is copied with all NIH test results. Further the NIH is a marvel in efficiency with tests and imaging being done in the morning and meetings with Dr Madan in his staff that afternoon to discuss the results. Imagings can take a day or two, but the results are quickly put on your NIH portal web cite. They also cover transportation costs. I'm in the Washington, DC area so it's a quick ride on the Metro.
My experience with now 2 months of enzalutamide is some dizziness and "fog brain". Just starting to get a bit of the expected nipple sensitivity. Thus far it's barely noticeable, certainly nothing requiring surgical treatment.
The mild nipple reaction may be because do intense workouts both cardio and muscular. I believe that regimen has lessened all the potential impacts of my dance with this devil, including rapid recovery from my prostatectomy.
When BCR hit I also was very fortunate to have Dr Sean Collins as my radiotherapy oncologist at Georgetown University Medstar who believes there maybe too much lifetime prescription of ADT.
See
https://share.google/v5bxNUMWuzXjawO0W
It's also a great lecture on treating oligometastatic nodal pc where he states it shouldn't have arbitrary number of lymph node cutoffs, and discusses serial use of SBRT. He publishes extensively and is well worth following.
He's now at the University of Southern Florida and Tampa Hospital.
So kind of a windy discussion.
But I hope it has some useful nuggets for many.
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4 Reactions