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Greetings! I've just joined here due to the American Cancer Society's CSN (Cancer Survivors Network) forum has announced they are terminating their website. It was a good one and I found it very helpful during my Pca journey thus far. I'm hoping the Mayo Clinic's site will be as good or better? Quick background; diagnosed fall 2023 with Gleason 4+3=7. Two biopsies confirming. Had MRI, bone scan, PSMA PET scan, and Prolaris genetic test all of which concluded no spread outside of gland. Was told I was a good candidate for focal therapy due to single lesion and in an optimal position. So I chose IRE Nanoknife procedure which was successful confirmed by imaging and biopsy however six months later PSA rose and another PSMA PET scan indicated activity in the pelvic lymph nodes. This initiated more treatment of 40 sessions pelvic IMRT total 80gy and taking Orgovyx and Zytiga for a prescribed 24 months. I'm a little over a year into the ADT and my PSA is .05 over the past few tests. The ADT with second gen Zytiga is beating me up a bit. I'm hopeful I'll start feeling better when this regimen finally ends and hope that it's been effective enough to keep my Pca in remission for a while?
Anyhow, I'm hoping I'll be welcome here.
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Of course that you are welcome : ))) !!! Everybody is welcome here < 3
It is really pity that CSN platform is closing : (((, I am sure thousands found comfort and support there. Yes, there are many other places offering the same, but we as a species like the comfort of structure and routine and especially in times of distress, so having that suddenly disrupted for no good apparent reason probably makes one feel somewhat lost and also sad. I know I would be very distraught and even panicky if somebody would take Mayo forum away (God forbid !!!).
I hope that you will find this place as supportive and as informative as was CSN network < 3.
Once again - WELCOME : ))) !
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2 Reactionswelcome to the club- yes the ADT therapy is tough..I am on Orgovyx and Nubeqa since July 2025
Gleason 8-4+4 with 2 pelvic lymph nodes..PSA was 71 now ( since late Spet 2025 < .02 and since Dec < .01)
I had 45 IMRT sessions last fall. Never really had PC symptoms..but did have a kidney stone and treatment then thought I had ITI..finally someone suggested PSA test...holy guacamole...was the most surprised and scared MF in the whole USA for a while til I got my footing...
I think you will be fine..keep taking your medicine..may need another round of radiation tho..in pelvic area...Jeff Marchi is the guru here..he knows all the guards and can get you lots of info..just gotta slip him a pack of smokes..but dont ever rat him out ! good luck..will see you around the grounds !
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3 ReactionsI have a prostatectomy and 3 1/2 years later. It came back so I had eight weeks of salvage radiation. My PSA stayed undetectable for 2 1/2 years after that then it started rising again. I was also a 4+3 but I found out about five years ago. I had BRCA2 so that explains why my cancer has come back four times over 16 years.
Your PSA at .05 is considered undetectable by most doctors and even the radiologist at Mayo Clinic. I was just in a meeting about an hour ago At the monthly Mayo Clinic meeting for prostate cancer patient. The radiologist said if you’re less than .1 they consider you undetectable. What they’re interested in is the doubling time if your PSA starts rising. Yours has stayed stable, which is great, just keep track of it.
After 2 1/2 years on ADT, after radiation failed me. I was put on Zytiga. It gave me high blood pressure, A lot of hot flashes and four afib Event events in the 2 1/2 years I took it. Some people get a lot of fatigue from Zytiga. There is usually a solution to that. The standard prednisone dose for somebody on Zytiga is either 5 or 10 mg. If somebody’s having fatigue, they can increase their prednisone, which helps significantly with the fatigue since it restores cortisol, which is eliminated by taking Zytiga. You can speak to your doctor about it and if you are on 5 mg ask if you can go up to 7.5 or 10 mg, That is considered a standard dose. One Doctor Who was at a meeting giving a talk about his prostate. Cancer said he moved up from 5 mg to 7.5 because he was feeling so much fatigue and it worked.
Your focal therapy experience is not unusual. The long-term results are not really known. At this point, it has worked well for you and it could continue that way for a long time. I’m posting this just so you are more informed.
At the 11/1/2025 PCRI conference the following was said by Matthew R. Cooperberg, MD, MPH Urologic Oncologist UCSF
What about focal therapy?
* The energy modality matters much less than the accuracy of the imaging - which is not there yet.
* Overall focal therapy is associated with minor side effects, but high rates of recurrence both in- and out-of-field.
* Focal therapy is not really a replacement for surgery or radiation; it is better considered an adjunct to active surveillance
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3 ReactionsWelcome!
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1 ReactionEverything happens for a reason and you being here is just another example of that.
Your case - a single, isolated lesion treated focally is what most ‘experts’ would recommend; yet, look at the results…who’d a thunk it??!
Your presence adds another nugget of knowledge for all of us - especially those pondering treatment who might have characteristics similar to yours.
So sorry the conservative approach was not successful - but we are reminded constantly that this disease lets us take nothing for granted and what seems so simple and straightforward on the surface may be hiding elements totally unknown. Welcome to the Forum,
Phil
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1 ReactionHi Steve,
Im over here also from the American Cancer society website.
Dave 3+4
Welcome dude, I read your replies. These responses are excellent information for ya. These people helped me thru my ADT scenario 2 years ago. They are smart people victims of PCa. Please adhere to their advise. I did. I m just a bourgeois man. Lol