I had been hoping for a “cure” from pc after finishing 2 years of orgovyx/zytiga+pred starting 5/2021 and SBRT of pelvic nodes in 8/2021. But my psa began to rise in late 2023, continuing through the present. Current psa is 0.36. My MO has ordered a PSMA PET Scan/Pylarify for next week. I guess I can forget about a cure now. I’m pretty down about it. I’ve been fighting this disease since 2013. I had feeling a lot better after a year of ADT vacation and I’m dreading going back on.
Please keep me in your thoughts and prayers as I await the scan results. Am I correct that any further radiation to the pelvic area is probably not possible? If mets are found outside the pelvic area, what then; radiation for those mets? I will be 70 next month. I have updated my profile. Thanks for any advice or words of encouragement!
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ekirkland
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I'm sorry the salvage radiation didn't work. If you had SBRT of your pelvic lymph node area (25 Gy in 5 treatments?) you may still be able to focally treat any individual pelvic lymph nodes that survived, depending on its location.
Your PSA is still low. If it rises, and with a rapid doubling time, consider these protocols:
Ah yes, when "cure" is no longer in the equation...next to the chock on originally hearing your diagnosis, the next "bad" news. Still, you may be able to manage this as a chronic vice fatal disease, albeit with costs, the side effects of treatment.
it may be possible to radiate depending on the results from the scan. After SRT failed in 2016 I did triplet therapy starting in January 2017 which included WPLN radiation.
That brought 4+ years off treatment.
When we imaged in March 2023 my radiologist had no issues doing SBRT to the site identified in the scan. I added 12 months Orgovyx.
I'm six months off treatment, PSAs .01 and .03. Is something going on, likely. When will I need to go back on treatment, who knows.
As I have said before, my medical team and I have decision criteria in place about when to image and what constituted sufficient clinical data, both my clinical and current, to go back on treatment with what, for how long.
You should discuss with your medical team but my layman's understanding is that SBRT for MDT may be used for palliative care or to delay the onset of ADT,
Depending on the clinical data, GS, GG, PSADT and PSAV, imaging results you may choose to do SBRT only, do that and add ADT +/- an ARI, for a defined period and then come off treatment if your response is such is such that PSA drops to undetectable in the first 3-6 months and stays there.
If your PSADT is >12 months you may elect to simply continue actively monitoring, kick the decision down the road until a treatment decision is necessary.
Think through your choices, discuss with your medical team and then decide. You have choices!
I have high risk PCa so have chosen to treat early. So far it's been for defined periods, knock on wood...10+ years, only three on treatment. While on treatment, with the exceptions of travel restrictions when doing radiation's, the side effects I experienced and mitigating strategies have made them generally annoying but not life altering.
Last thought, there are options if you choose to go the systemic route, Orgovyx vice Lupron, ARI mono therapy, heck, look up the PATCH trial!
My father in law had a similar story. Journey began with RALP at 60 yrs old, PSA started rising at 70. He is now 80. He only had radiation to his prostate bed at 70. Between 70 and 80 he has had radiation to hot spots identified by PET scan and switched from Zytiga to Xtandi. He PSA went up to 11 but has now come down and stabilized at around 4. He does have bone lesions and takes a periodic infusion for that. Good luck to you and prayers for you.
The rise in your PSA indicates that there are PC cells in your body. At this point they are very small and not much concern. However, if they should continue to grow, as indicated by PSA, you will need to have ways to control them. ADT is of course an option. Radiation is also an option. Self-treatment by heat and diet may help to control them as well. Check my bio for the ways I have controlled/eliminated metastases.
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