17 Months post RALP. Stats were T3a NO MX, G- 4+5, PSA 9. Clear margins. My PSA 4.5 months post op was 0.1 and a month ago was 0.2. I have had total faith and admiration with my medical team and I have just gone with the flow of their recommendations. I am now querying in my head what they are saying as I read of others experiences on the forum. Wondering now if my team's plans are sound or whether I should and whether I am able to push for different action and that is what I am reaching out to you for your opinions. Firstly I am told hosp will not investigate rising PSA until it reaches 0.4 because scans are not accurate below this level. Others seem to have RT at 0.2. To me, this seems a big difference and I wonder whether I am going to have to wait another 17 months for the rise by which time the cancer could have been on a very long ramble through my body. Are the current proposals sound or are they inferior due to old equipment or costs? I am also told when the time comes I will not be given HT. Everyone else seems to have HT. Although not pleasant, is it really advisable to have? Lastly I am told the lab cannot do PSA testing to 2 decimal points whereas others seem to benefit from that. I wonder is that a fact? It is becoming more important to me now thinking the 0.4 deadline could be 0.44 in practice Or perhaps even higher, depending on the convention they use.
Hi Static
As we know PSA after surgery should be near zero so worrying has gone from .1 to .2
Not sure what the time gap is between the two readings.
I would have one more PSA soonish and if up again push for RT
The main issue with doing a scan at such a low PSA level is that nothing may show although I think some of the latest scans can show something.
Sorry to hear , I'm sure some salvage RT will sort it
Best wishes
Steve
Hello Static I have done some research into your issues but there isn't a black and white answer. As far as I can see:
* Your PSA after surgery should be undetectable - as it's rising there is an issue that needs looking at.
* From what I read a PSMA-PET scan should be able to detect where the cancer is above 0.4 so that's why a scan hasn't been offered.
* Different testing labs do PSA tests to different decimal places - my GP does it to 3 decimal places, my Cancer Hospital (Christies) does it to two.
* Different Hospital Trusts appear to take action at different PSA levels.
Personal thoughts are - Keep on to your team and tell them the rise in PSA is causing you anxiety and ask when do they expect to take some further action.
I hope this helps - I am sure others will come back with their personal experiences.
Best wishes - Brian.
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Hi Static.
Good advice from Grundo and Brian. More modern PSMA PET scans have an accuracy above 0.2 but I think are more definitive as the PSA rises and less likely to give false negatives or positives. You have a couple of risk factors in that your Gleason is 9 and your PSA did not drop to negligible after the prostatectomy. Also you have other health issues which are currently under control. There is an interesting review which intimates that having salvage radiotherapy when the PSA is below 0.25 gives a significant improvement in terms of death from all causes.
Thanks for the replies and the link. The rise from 0.1 to 0.2 took just under a year. So quite slow. I have another PSA test and consultation in a month and so will raise the matter again.
Hi Static, the other replies have given good advice. I have been having regular PSA tests for over 6 years. Initially to 1 decimal place but then a couple of years ago testing in my area went to 2 decimal places. My oncologist explained that the early testing was much less accurate and was usually rounded down, so your score of 0.1 might easily have been 0.18 but shown as 0.1. I don’t think one individual rise is that significant over nearly a year and can be distorted by exercise or sexual activity anyway. Your next PSA will probably give your team a clearer picture of what is or isn’t happening. Best wishes, David
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