Hi all. I’ve just had a call today from urology. I’m being referred to to oncology. I was a Gleason 3+4 T 2. With a Psa of around 7 prior to op. I was told a few weeks after the op that my prostate biopsy showed cancer cells right up on the edge and that there were positive margins even though my consultant did not seem bothered by them only future psa ‘a’. Unfortunately 3 months after op psa was 0.11, now another 3 months have passed and psa today is 0.23. I was advised that if it went to or above the 0.20 then that’s when a plan of treatment would probably come in. Nerve sparing on 1 side was attempted, I wonder if this is where cancer cells may be left. I’m Really cheesed off and worried that things may just continue to go from bad to worse. Any advice or thoughts on treatments or where this might pan out? Thankyou.
Hi MWP, sorry to hear about your situation.
I presume that the MRI didn't show tumour near the gland edge?
Salvage Radiotherapy is now required to finish off the remaining cancer cells which may include HT.
Still potentially curable which is the good news , hope all goes well.
Best wishes
Steve
Hi MWP , don’t forget that you are G7 so no panic. Waiting seems counterintuitive but is the guideline. It is frustrating but actually the longer it takes to get your PSA to 0.2 the better while on the other hand once you get there you can get a treatment plan. Personally I would be happy to wait and have a low PSA. David
Hi !
PSA of over 0.2 after prostatectomy is most probably recurrence. It’s on a level that a PSMA Pet Scan (which I would check if I could have) might detect the area of recurrence and in most cases it’s in the pelvic area. So x months of hormone therapy and salvage radiation and there is good prognostic outcome with this dual modality of treatment.
So, I wouldn’t wait but instead go hard at it with salvage RT plus HT
Best wishes - Ulf
Hi. I am in the same boat as you now but my story is slightly different. I had op 2 years ago. My stats wer PSA 9, T3a, Gleason 4+5. I was told clear margins after op and consultant seemed very confident he had got it all. PSA has however been rising slowly since and it is now 0.4 (My lab only tests to 1 decimal point). I was told that no further treatment would be carried out until PSA reaches 0.4 and it now looks as though it will get underway early next year.
The main point of my post is to say each treatment team seems to have different ideas about how to tackle re-occurance. I envisage we are all really 'guinea pigs' and the experts are still determining the absolute best course of action and perhaps there will never be a 'best'. I have been advised all along that I will have a PMSA PET scan to determine where the cells are and then RT but no HT. My understanding is HT reduces the risk of the cells splitting and spreading and RT kills/destroys the cells. My team consider HT is not necessary as they consider the benefits v the side effects are not warranted. They also consider that leaving the PSA to rise to 0.4 increases the accuracy of locating the cells during the scan.
I have been very concerned as others on this site have had RT from 0.2 and I think most have also had HT.
I have done a lot of googling (in particular there appears to have been far more published studies on American sites) and looking at the stated statistics there seems to be very little difference between having or not having HT and when best to have the scan. Some statistics suggest that leaving the PSA to rise to 0.6 is best. I have borne in mind that all studies are based on past history and that modern treatment may make stated study results irrelavant. The fact is the learning curve is still rising for us all and techniques are changing and improving.
I am now comfortable and confident with my teams plans because I have faith in them and in any event I don't think I would be at all tollerant of the potential HT side effects. I still have a little dread that it will be found the cells have spread which could have been prevented with earlier treatment but then I think that is the luck of the draw like being part of this 1 in 8 group of men. For most there are still options which are increasing every day and I still plan to grow into a grumpy old man no matter what.
Hello MWP . There appear to be different opinions amongst the experts as to when to start salvage radiotherapy following recurrence after Prostatectomy and whether that should include hormone therapy. One route is to hit it hard and fast with combined RT and HT as the addition of the HT is believed to make the cancer cells more sensitive to the radiotherapy if first administered at the same time (the mechanism is still not fully elucidated). The criteria used is time to further recurrence which seems to be better using this strategy compared to RT on it's own. Who this strategy will most benefit is related to the number of risk criteria the patient has (you don't have them based on your statistics). Another risk is the rate of PSA increase and yours appears to be heading into the high risk area of a doubling in 6 months or less. In most cases the cancer cells are found to be still in the pelvic area which is why traditionally RT was directed here in a blanket fashion in order to try and keep the patient on a curative pathway. With the latest PSMA PET scans there is greater accuracy on identifying the location of the cancer cells so that a boost can be given to that area as well as the rest of the prostate bed. The difficulty is that the PSMA PET scan can pick up cancer cells when the PSA is as low as 0.2 but it is more accurate at the 0.4/0.5 level.
Here are a couple of things you might like to read and look at so that you can have an informed discussion with the medical team.
One thing which I forgot to say was that the histology from the Prostatectomy can change your risk group so this can affect your likelihood of a recurrence and also give a better indication of the speed with which to act.
Hi !
I think it’s important to point out that, even when doing a PSMA Pet Scan, what a Scan shows might not be the total ’truth’ as micro met or extremely small areas doesn’t necessary show up on a Pet Scan and this alone is a very important part of adding the hormone therapy, to starv, shrink and hopefully help kill off this possible Micro areas and also any possible free floating prostate cancer cells in your system.
But, doing salvage radiation together with hormone therapy have very good prognostic features as it’s done with a curative intent and the overall results are better then radiation alone given of course that you have no Health issues that might be impacted if doing hormone therapy. Then salvage radiation alone might be the treatment path (also with curative intent of course)
The main thing here is that your probable recurrence have high hopes of a very efficient salvage treatment with curative intent to hopefully finally get rid of the prostate cancer beast
Best wishes - Ulf
Hi Ulf. There is an interesting comment in the video which says that men who do not show anything on the scans, because they are probably micromets, show a better response than men whose mets show up.
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