I am now 11 months post RRP (G7=4+3+5% 5; ECE; SVI). My post-op PSA was undetectable but showed up at 0.024 almost 6 months after surgery and now, 11 months post-op, has increased to 0.082.
The rate of PSA increase has stayed flat at around 0.01/month, so that the PSADT has increased from ca. 3 months between the first two measurements to 5 months when taken between the last two monthly measurements.
Two months ago I went to London and started on CareOncology's protocol of metformin/atorvastatin/mebendazole – doxycycline, with the latter two alternating monthly. It's possible these drugs have contributed to slowing of the PSADT, or it may just be the PCa can't grow any faster - no matter how you look at it, the PSADT is still very short.
I recently submitted a pathology specimen for Genome Dx testing and got the sad result that my genomic score is high risk at 0.91, equating to 47% 5yr metastasis risk and 23% 10yr PCa mortality risk.
To make matters worse, a couple of Proliferation signatures rank me at the 96th percentile, borne out by individual gene scores of 97% for Ki67 and 95% for TOP2A. The tumour is basal-type and rates 96% on a PTEN-loss genetic signature. These percentages are my rank within Decipher's GRID RNA library population of 2,989 entrants... that can't be good!
The only decent news is that I rate at 87% on a positive post-op radiation response genetic signature, a variant on PORTOS... I'd happily post the full GRID gentic results but can't figure out how to embed an image within a post.
Based on all the above, my plan is to have a PSMA scan in a couple of weeks, hoping to spot a target even though the PSA will only be around 0.1 at the time, and most likely eSRT in the first couple of months of 2019, with a year or two of ADT thrown in for good measure.
I would dearly love to avoid the eSRT and ADT - but this thing looks nasty and is moving fast.
I would very much welcome any suggestions on alternatives I should consider - I'm happy to go anywhere. I have asked about immunological options, only to be told that CAR-T and all the other things I read about are too experimental at this stage and I need to just do the eSRT/ADT...
Anyone got a better idea?
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Your genomic testing is very interesting and I can't wait until the day comes when it is a standard of care and determines treatment. I opted for SRT at 12 months with a PSA of 0.12. I asked for the lowest dose possible of 64.8 GyU and no ADT was offered to me in 2013. Yes, with your PSADT by all means when your PSA reaches the 0.1 to 0.2 range consult about SRT/ADT with the best treatment facility within your area. Even with SRT I had BCR 3 years later and a PSADT of 3 months. I am currently 7 months into a clinical trial on Enzalutamide open label. If you are in your late 60s or 70s you might just pass on SRT and go straight to an oral therapy when appropriate. You had a low post surgery PSA which is encouraging even though you appear to be headed towards BCR.
And thankyou for your encouragement - I'm 62 but my youngest is only 9 so I'm keen to be around for another 20+ years, notwithstanding the rotten genes.
To be frank, it's an outcome like yours that frightens me most - all the grief of eSRT, only to end up with BCR anyway. It feels kind of "unfair", as if fairness had anything to do with it.
The cost of Decipher for people outside the US is US$3,400, so not prohibitive in the context of other treatment costs, and the good news/bad bews result has certainly helped me make the eSRT decision - it's something I would reccomend to anyone whose pathology is at all concerning.
eSRT/ADT is certainly your best bet in terms of the odds of a cure. Your high Gleason score (tertiary 5) and high stage (pT3b) and rapidly rising PSA all suggest that you need to get on this ASAP. In fact, I think it is prudent to start ADT right away to halt further progression, give you time to recover, and you need ADT for at least a couple of months before radiation begins anyway. BTW- I didn't know that Genome Dx was analyzing post-RP specimens. Some important decisions lie ahead -
1. SRT Radiation dose: there is an analysis that suggests that higher is better. Some top ROs are routinely giving 72 Gy to the prostate bed. Also, your aberrant TOP2 gene may confer some radioresistance that must be overcome. That should be possible without extra toxicity with the best linacs, some good planning by a top RO, and some anatomical luck.
2. Adjuvant ADT - It has been proven that at least 6 months improves survival. With your adverse pathology, I think you should consider a longer stint.
3. Pelvic radiation - Yes, even if none of the scans show any cancerous LNs - you have to treat what you can't see.
Hello Allen and thank you for your helpful comments and blog, of which I've become an avid follower.
The post-op Decipher process is very well run - we sent a full block so they could select the highest grade area to sample, and from the look of the results I guess they managed to hit the G5! Consultants here in Melbourne tell me that GenomeDX are keen to have Decipher used to stratify men in future PCa treatment trials - it will soon be offered much more widely in that setting, all around the world.
To my (non-medical) scientific eye, some of the work underpinning the correlations in the Decipher GRID looks a little dated and short on rigour, but it can only be improved by more widespread application of the technology. It remains to be seen if this approach is eventually overtaken by liquid biopsy technologies that have the advantage of dynamically sampling the whole cancer ecosystem as it evolves - my money would be on this outcome, but I'm happy to use what's here today.
Your comments on dose and pelvic targeting match what I'm being told here, by a very conservative Rad Onc who I have faith in - I trust him, which is important, but I just wish he was more optimistic that this would be the end of it!
You mention that ADT should start ahead of the eSRT - I haven't got into that detail with the Rad Oncs here yet, but what's the reasoning and is there some "standard practice" in this area you're aware of? Also, have you heard of anyone employing the newer ADT agents at this early stage? One consultant has suggested that, cost aside, this was something he would advise. My only concern is that this could blunt usefulness when I might need it (hopefully many years) down the track - any thoughts?
The purpose of ADT before (neoadjuvant to) radiation is to radiosensitize the cancer to radiation. Maximum effect is achieved in 2 months, so standard practice is 2 months. The purpose of ADT adjuvantly after radiation is to kill off any remaining cancer cells.
I know a few men who have used Zytiga+Lupron neoadjuvantly (it's a bit of a mystery how they got it approved). I really can't say if that improves results (no data yet), but if you want to be as aggressive as possible, that is certainly an option. ADT side effects may be worse, however. I wouldn't worry about using up your options - you are shooting for a cure! And even if that doesn't pan out, there are always more options in the pipeline. Earlier use almost always has more benefit than later use.
I think long-term ADT is especially important when there are known pelvic LN mets because the maximal radiation dose there is usually not much over 50 Gy. If you have access to it, I think that an immune stimulant like Provenge or even Leukine may add to the effectiveness of the radiation.
I had a brain fart when you wrote "Genome Dx" - I'm so used to the term "Decipher" - the product they offer. I'm aware of their PORTOS score - but what is the variant you wrote about?
Hello Nalakrats, and it's really good to have your input, thank you.
Location is certainly the million dollar question, especially as surgery resulted in negative margins. I'm told circulating cells would be absolutely undetectable with any available form of liquid biopsy, and that re-occurence is probably in one or two lymph nodes "somewhere". PSMA scans are widely available at quite modest cost here in Australia - I had one pre-op that showed neither ECE or SVI. Of course, there was a brightly blazing prostate dead-centre at the time, and the subsequent PSA evolution (which I am indeed measuring on a monthly basis) indicates there wasn't much to see outside the prostate at that time.
Experience down this way is that PCa can be localised by PSMA scan in about 13% of men with PSA= 0.1, rising to about 30% at PSA=0.2. If the PSMA scan I have shortly proves negative, I have indeed thought about waiting and repeating when PSA = 0.2, but the chances of a durable eSRT response (say, 5 -10 years BCR-free) are not all that special anyway and fall by around 2.5% per 0.1 rise in PSA.... so if you're going to do eSRT, then the earlier the better, it seems to me.
Also, even if you do image a location, you then have the issue of what to do about it. Targetted SBRT alone, or that plus the whole eSRT thing anyway? SBRT-alone results haven't been that impressive from what I've seen, at least not when judged over the longer term.
I saw the surgeon who did such a great job for me the other day and he said he thought eSRT plus two years ADT was the safest bet - and he made the point that at least the ADT would make the PSA go away as an issue for a while. Perhaps he's right - I would really like a break from thinking about PSA, even if it comes at a very high cost in terms of ADT, which so many men on this forum describe in quite frightening terms.
All that said, I truly do understand that I am at the very lucky end of things by comparsion with many others here - and it's something I am profoundly grateful for, I can assure you.
Thanks again, and I do hope those monthly tests of yours stay right on the money...
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strange results
BAT question. A little worried about results. 
My son’s Testosterone results:
Pretty quick failure of ADT + Zytiga... next?
