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Rising PSA post RARP + new pet scan results
I’m new here and I have greatly appreciated everyone’s input. My husband’s PSA has been rapidly rising since his RARP in early June. We knew going in there were some pelvic nodes that were infected. Our wonderful surgeon told us he would try to remove the infected nodes during the surgery and he did successfully remove two out of three. He told us we were likely looking at follow-up radiation down the road. OK, we get it. However, the PSA since then, a few months ago, doubled and then tripled very quickly. So we were of course getting quite worried. Our insurance made us wait for THREE PSA tests before they finally agreed to cover a new PSMA pet scan. Anyway, we had that scan yesterday and I am pleased to say it detected several pelvic nodes that are infected including the one the surgeon couldn’t get out during the RARP. Why am I pleased you say? Because what we can see is still in the pelvic area. And the node that wasn’t removed had reduced its suv max value by 40% in two weeks on Orgovyx. Our oncologist gently prepared us for something worse because of the Gleason 9, cribiform, and a bunch of other very aggressive factors. We are headed for radiation + doublet therapy for two years…and one margarita each before dinner.
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Thank you for your response. I make skinny margaritas (no sugar). And, I have heard that tequila is the least sweetest of the spirits.
Apologies for my outburst. I know you were trying to help.
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1 ReactionWe were told the body has to heal for awhile after RARP before the radiation can begin.
Hats off to Jeff, I have Learned more about my cancer treatment from him
than anyone else, and I would say he is right on.
Thanks Jeff
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1 ReactionWishing you the best of luck with your treatments.
Absolutely true and I have mentioned this in a bunch of different messages. 3 to 4 months is what they frequently like to wait
Sorry to hear about your bad news and pleased to hear about your good news.
I had surgery for a G 9 and post-op pathology identified extra prosthetic extension (EPE).
My pre-op PSMA Pet scan did not clearly identify PCa in my lymph nodes (or anywhere else).
My first post-op PSA was 90 days following surgery and it was a disappointing .19 that was called persistent and I was referred to the radiation oncologist. A second PSA 30 days following was .18
My salvage radiation treatment was IMRT radiation to the whole prostate region and pelvic lymph nodes together with 4 months of ADT Orgovyx (See SPORRT trial).
Salvage treatment was not pleasant; but it wasn't horrible either.
And I am pleased to report that for the last 2 years my PSA has been undetectable at < .02
My understanding is that salvage radiation treatment is best initiated between .2 - .4/.5 with the trend toward treating on the lower side of that range.
Best wishes.
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5 Reactions@michaelcharles Thank you so much for your response. I have come to really like the word “undetectable”! I suspect we will be doing the same salvage treatment as you except a longer course of ADT plus an add on like Zytiga, etc. Nothing was found outside the pelvic area, and no bone involvement. They say it’s still curable or at least the treatment can put it into remission for a long time. Thanks again for sharing your story and I wish you smooth sailing from here on out.
Given the high-risk clinical data you describe, somewhat surprised your medical team may not have discussed triplet therapy. The guidelines, such as NCCN and AUA indicate its use. There may be other factors, insurance as you have seen, health of the individual, personal preferences...
There is nothing "wrong" with doublet therapy.
One of the clinical data you may want to discuss with your medical team is how fast the PSA drops on treatment. If it drops to < .2 in the first three to six months, that is an indicator of "success" and a longer PFS period. If it does not, then maybe a discussion with his medical team about chemotherapy.
My experience, albeit exactly that, "my" and "experience" is that advanced PCa is unlikely to be "curable" at this point in medical research. It can be "managed." High risk cancer, like mine, may require aggressive approaches in treatment. That is a discussion with one's medical team.
I am 11+ years into my journey. Each time I have gone on treatment, I have weighed my decisions in concert with my medical team using the science, guidelines and the art, data from clinical trials finding its way into mainstream clinical practice.
When I was not aggressive enough as with SRT only vice adding short term ADT and WPLN radiation, the results were less than optimal. When I was aggressive, doing triplet therapy, the results were more to my liking.
As they say, my body, my choice...I would consider discussing all options, have a multi-disciplinary team, start with the guidelines, then review pertinent clinical trials, and decide.
Kevin
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1 Reaction@kujhawk1978 Thanks so much for your input. I understand complete cure is highly unlikely to be possible at this point. Others have mentioned we should ask about triplet therapy and I am going to do that. I assume you mean a drop to < .2 after salvage radiation combined with the doublet therapy? Our oncologist says he needs to be on the doublet therapy for at least two years. How did you handle the chemo? My husband is terrified of it.