A 72 year old friend had RP 3 months ago. Likely ED, but no incontinence now. His PSA was 40, and he believes his Gleason score was 9. Bone and CT scans did not indicate mets, or concerns outside the prostate just post op. Two months post op, his PSA was at 17. Now, a month later, PSA is 40, and current CT and bone scans still indicate no spread. His understanding of what his urologist told him is that there are no concerns about mets, based in the recent scans, although he hinted at something "nuclear" for future treatment. (In Ontario, Canada, we have the least access to PET and other advanced scans anywhere in the world these technologies are available. This is deliberate and likely illegal, but almost impossible to correct) My friend is not on ADT or any other treatment at the moment. He is planning to leave for Asia in a few weeks for a 3 month stay, and his uro said that would be OK. I've been treated for stage 4 PCa in the US, and I did, and continue to actively research aspects of PCa, and to me, this all sounds more than fishy. My understanding is that PSA should have dropped to near zero, 2 months post op, and the fact that it has more than doubled by the third month is concerning to me. I figure he is a clear candidate for advanced scans, but he has no funds for scans here or elsewhere.
My friend does not want to think any more about his problem or any further treatments for now, so he is willing to be away for the 3 months, with no further action. He's not the type to take the bull by the horns on this, although he has always been street tough.
I'd appreciate any input from members....you know who you are....On the risks for him to go ahead with his plans.
Thanks.
Written by
yamobedeh
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If his PSA is that high after RP and rising fast with a doubling time of less than one month, he has metastases. I would be not be leaving for 3 months at that point before having this figured out and at least starting treatment. They might be able to use radiation if there is a small number of mets they can see with imaging.
Most likely he will be put on ADT which, for most would involve a shot every 3 months. At a minimum, I would get the first shot, make sure the PSA is going down, then take off.
Leaving for a 3 month trip without dealing with this sounds like a really bad idea to me.
One other thing. I would be looking for another doctor, preferably a Medical Oncologist.
Unfortunately, the DCFPyL PET trials in Ontario have ended. Isn't Axumin available in Ontario? If not, he may want to start on ADT before he leaves. That should freeze the cancer, and he will require it at least 2 months before SRT anyway.
at the very least a bone scan might show metastasis .... Axumin might be better .... both of these are common in the non-advanced prostate imaging in the USA ..... Bone Scan is not Pet imaging whereas Axumin is. I would guess there might be a PSMA study in Canada .... he would might be eligible. He might want to consult a Medical Oncologist .... the Urologist is a skilled surgeon as this is what they do ..... a Medical Oncologist treats Cancers ..... it is what they do.
As I mentioned, my friend had CT and bone scans pre and post op, and 3 months post op, and nothing of note was found. In Ontario, Canada, we have the very least access to any PET and other advanced scans and radio tracers beyond this, anywhere in the world which has this technology. It's apparently a deliberate policy which is politicly and profit motivated. As well, my friend was not referred on to MO or RO, the rationale being that his uro works in consultation with these specialists in several hospitals and the consensus was that no further higher resolution scans were needed at this time, nor any ADT. I think this more than borders on malpractice and callous mistreatment, but this issue is nearly impossible to address because docs can hide behind "standard of care", which seems a bar set far too low.
My friend is extremely stressed, and not the type to hit the research resources, or to question his docs. He is very strongly motivated to push this all away, at least for a few months. I'm in no position to advocate for him, other than to give information, and offer questions he should be asking, and strategies he would be wise to consider. With PSA at 40, and doubling in perhaps less than a month, I am very concerned for him, but it's his decision whether or not to rattle some cages. He does nat have the funds to pursue Dx and treatment elsewhere as a self-pay option.
In my opinion it was irresponsible for the doctor to say that there are no problems with metastases (if that is what the doctor in fact said). One of the scans your friend had only detects bone metastases and is used in conjunction with CT scans. The latter may detect visceral metastasis but PMSA type scans are much better at detecting them, especially at the PSA levels your friend has. Tell your friend that doing nothing will be far worse than starting androgen deprivation therapy - this is a minimum. Chemotherapy with docetaxel should also be considered - the combination of chemo and ADT can significantly extend his life. If he does not want to do chemotherapy, then he should ask his doctor about starting abiraterone (Zytiga). Regards, Phil
I question whether he was a good candidate for surgery in the first place, but he can't go back and do it again unfortunately. My guess is the reason why his PSA did not drop to very low following surgery is that there were positive margins or metastatic disease prior to surgery. If he gets good imaging and they find the mets, he might be able to get radiation to those mets. The longer he waits, the less likely that will be an option.
You can lead a horse to water......... Tell him to have a nice trip and while he's on his trip to make sure he makes out a legal will....... (make you the beneficiary?)
That's about it. As a last resort, i asked him if PET scan indicated areas of concern, and that ADT or other treatment was strongly indicated, would he still go away without treatment. His answer was "yes." I get it, but I don't like it. I have to accept it, and get back to my own stuff.
I realize that many men adopt this attitude and decision making about their PCa. I suppose it's our innate make-up and temperament which determines whether we grab the bull by the horns and fight for the best treatment we can get, based on intensive research and networking.....or just accept things as they are, as fate, perhaps made worse by not seeing much value in being on this earth much longer. I used a line from the TV series, "Stargate."....."If you don't make it, can I have your stereo?" We shared a sardonic laugh on that one....Sigh...
Try not to lose hope. There is a good chance he will come around and seek treatment. He will still benefit from treatment even if he waits. I am lucky that prostate cancer can still be treated at a late stage. Mine was discovered with a PSA in the high 300s and many mets all over my skeleton. In my case, it was the extreme pain that motivated me. So far, I've been going 2-1/2 years and have a good quality of life with treatments.
He said he will seek treatment when he gets back. He's aware that RT has been suggested. He's concerned about QOL, especially since he lost a kidney, most of his teeth, and a small fortune squandered by his brother. He could use a break.
To me, with his high PSA it's questionable whether he could benefit from RT over the long run. ADT will most likely be very effective in 3 months when he gets back.
Stereo..... hmmmm that's funny........... Well you've done your due diligence and you're definitely a friend indeed. He's fortunate to have you as a friend and hopefully he beats the beast his way. Do you think he has an 8 track?
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