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I was dx with PCa in May 2015, aged 47. PSA 68. Gleason 4+3=7. T3b. N0. M0. I underwent a non nerve-sparing RARP in Aug 2015. Seminal vesicles removed but no pelvic lymph nodes and margins were negative. Restaged (pathology) to Gleason 4+4=8. T3b. As anticipated and given that my postoperative PSA was not undetectable at 0.75, this was followed by 33 fractions of salvage IMRT in early 2016 with the addition of ADT [Casodex (Bicalutamide) then Zoladex (Goserelin)] for 24 months in total. PSA became undetectable (on ADT) from July 2016 and remained undetectable (off ADT) until November 2019 when it reached 0.10. (My last Zoladex implant was July 2017). This is what my PSA has been doing ever since:
My most recent imaging was an 18F PET PSMA in June 2020 (when PSA was between 0.22 & 0.27). It was completely clear. This was my first PET PSMA scan. Previous imaging has been choline PET CT (as part of the diagnosic process and following my IMRT), MRI and a bone scan (back in 2015).
In May 2019 having tried all of the medical options available for treatment-induced ED, I had a Titan Coloplast inflatable penile implant fitted. No post-operative issues and the implant is doing everything I expected!
I live in the UK and all of my mostly wonderful NHS treatment has been at both Guys and St Thomas' Hospital in London and University College London Hospital/UCLH. I remain under the care of my Oncologist and am currently on monthly reviews. No other major medical problems (though I am medically managed for elevated cholesterol, GERD and anxiety/depression).
I am pretty much resigned to the fact that I am firmly in recurrence territory now with a PSA of 0.47.
I'd appreciate any views on the current pattern of PSA acceleration and what this might mean? Local versus distant recurrence etc? I had a very bad time on ADT the first time around. I seemed to get every side-effect in the book though, in fairness, it was very effective in bringing my Testosterone (and PSA) right down. The thought of going back on it anytime soon fills me with utter dread.
Also a senior contributor on the Prostate Cancer UK online community suggested I canvass your views on whether or not my penile implant could be influencing my PSA levels in any way? A longshot, perhaps, but no harm in asking!
Thanks in anticipation and if you need any further info, please ask away?
I was hopeful your post would generate more knowledgeable feedback than I can provide. In the absence of any feedback thus far I will offer a few thoughts for your consideration.
In the U.S. the standard for a worrisome doubling time is one year. This standard is applied when the PSA has reached whole numbers not percentages as in your case. In any event the rise you are experiencing is alarming indeed.
It is paramount that your practitioners identify the cause(s)underlying the elevation of your PSA. The thought of course is to aim before you shoot.
Whether your penile implant is a contributing factor is an interesting question. Continued research on your part may produce the answer. It seems as if this were the case your surgeon would have forewarned you of this possibility. In any event perhaps you could raise this question with him or her.
Best wishes Don O.
Thanks for replying. Yes, I was hoping for more interest too but hen with so much going on in the world currently (and particularly in the US), perhaps people are busy trying to survive!
As I understand it the 18F PSMA PET scan I had in June is the most sensitive scan currently available (certainly in Europe) for PCa. Apparently it can detect activity in both soft tissue and bone with a PSA of 0.20+. So I am not sure what more can be done, at this stage, by my Oncologist in terms of tracing the source of the rising PSA? I'm hoping that at a minimum she will have a view as to whether the recurrence is local or distant.
I have another PSA blood draw this week with an oncology phone review the week after. I have an increasing number of questions in development and I will add this one to it. I'll post an update here after my appointment.
From reading both of your posts, I think you understand that a recurrence has taken place. In time clinical evidence to that effect will surface. The only question is either, confinement to the pelvic cavity which may be responsive to focal radiation, or distant micro metastasis, in either bone or visceral (organ). You make reference to your Oncologist in your posts. Are you referring to a Radiation or Medical Oncologist? Given your situation I would be seeking advice from both specialists. I think the steps that you have taken thus far are quite reasonable given the situation you are facing. Once the site/s of recurrence is established an appropriate medical intervention plan can be devised and implemented.
In respect to you question about your penile prothesis. The implant is localised to the coppus caveronosa of your penis and tubing/reservoir placed in your scrotum. It is highly unlikely to have any influence on your rising PSA. Rising PSA in the absence of the prostate gland is normally attributed to metastatic tumours.
Whilst your situation appears to be somewhat daunting, the reality is that you are entering just another phase in the PCa journey. Metastatic PCa can be managed very effectively today. Just keep your eye on the ball and guard your stumps!
I had a further review with my Oncologist today and my PSA is up again to 0.50 (from 0.43 one month ago - not 0.47 as stated in my original post). So it seems to be increasing currently at a rate of +/-0.07 per month.
My Oncologist is a "Consultant Clinical Oncologist" (and a Prof. to boot!!) so I am not sure if this answers your question re "Medical" versus "Radiation"? I'm not sure the two specialisms are split here in the UK as they appear to be in the US. Perhaps someone other UK-based forumite will be able to clarify?
I asked at today's phone consult if there are any clues (from the rate and pattern of PSA progression) as to the likely whereabouts of any cancer activity (i.e. prostate bed or micromets) but I was told that this cannot be determined from blood tests alone. For now it seems that the genesis of my increasing PSA remains a mystery.
The plan going forward now is to repeat the PSA in 6 weeks (end Nov) and for this to inform the timing of a further 18F PSMA PET scan in a further attempt at determining what is producing the rising PSA.
Your observations re the potential for my penile implant to be implicated in this unfolding mystery echo my own thoughts on the matter. I'm not quite sure why the person on the Prostate Cancer UK forum flagged it up for me to raise here?
So for now I will certainly keep my eye firmly on the ball with the stumps as well guarded as they can be. As always though, comments and observations are most welcome and highly valued.
The term Consultant Clinical Oncologist is not used here in Australia, albeit that our health care delivery systems model that of the UK. Medical/Radiation Oncology are two distinct medical specialities here in Australia. Given the complexity of training for each speciality I think it unlikely, but not impossible, that Royal College Fellowship credentials would be jointly held. If you care to give me a name of your Prof and Teaching Hospital, I will look up their training and let you know.
Firstly my apologies for assuming that you are US-based. I made the assumption based on the "medical" versus "radiation" oncologist terms you used. I didn't realise that Australia uses these role descriptions too.
I'm happy to provide the details of my Prof however I'm not comfortable publishing them in open forum. I couldn't find an email or email link for you. If you provide me with one (or drop me an email) I'll ping the details straight over.
Yes we do Paul very much based on the UK model seeing as we are still a member of the Commonwealth with the Queen as our Head of State. If you would care to just give me the name of the teaching hospital, that you attend, and I can work it out from there.
You learn something new ever day and you are indeed correct. UK clinical oncology speciality, is indeed a combination of radiation and medical. Five years of post grad training is a pretty heavy load. So you are in very good hands it would seem.