PSA extremely high after prostatectomy

Hello Mary  (MaryD0ll) 

A warm welcome to the Macmillan Online Prostate Community, although I am so sorry to find you here under these circumstances. I am Brian one of the Community Champions here on the Prostate Group.

Although I still have my prostate I can understand your concerns as after surgery to remove,  as you say the PSA should be below 0.1. Have you had a word with your husband's team yet as they should have the results of the Prostate histology and know if there were clear margins on removal.

I note your comments regarding the delay in a PET scan. It might be an idea to contact your husbands team and tell them you are available to take any short notice cancellations if you can to get an earlier scan.

I can confirm there are plenty of Community members here who have had further treatment after surgery and I am sure some will be along to chat to you. In the meanwhile please feel free to ask any questions, however trivial you may feel they are - you will get answers here.

Best wishes - Brian.

Thank you kindly Brian for your response. 
His margins were clear other than where the prostate meets the bladder, there wasn’t a full 1mm although they did say that that didn’t necessarily mean it had progressed to the bladder, just that it wasn’t fully clear. It’s just very concerning as his cancer was aggressive and the prostate was saturated in cancer (12 of 13 biopsy samples in May were positive) but yet it took 9 months to proceed to the protastectomy so you do wonder what has been happening internally all that time. Very concerning and I have been reading many threads on here of men who have undergone further treatment but can’t find anything on PSA 2.8 or similar a mere 6 weeks post surgery. Thank you kindly

Hi Mary

Im sorry you still have this worrying after your husbands surgery it’s such a stressful time. 

Could I ask why it took 9 months to have the Prostectomy and if they knew about the high Gleason and Lymph nodes prior to surgery? 

It could be that there is some cancer left in the prostate bed but I would expect that a PSMA scan may be offered to your husband to see if they locate where any cancer maybe left. I can’t remember the name but I think someone else in the forum has had the same high PSA after surgery so it maybe worth doing a search. 

Best Wishes 

A

Hello Mary.

Sorry to hear that you are still going through the mill but salvage radiotherapy is going to be needed once the scan identifies where the target is. It might be an idea to check that your husband is getting the PSMA PET scan which is very sensitive for prostate cancer and will show it up anywhere in the body. Unfortunately salvage radiotherapy is needed at some point in 25 -45/50% of men following a Prostatectomy so there should be others who come along with their experience. There was a recent thread with someone in a similar situation with a high PSA following initial surgery - here is the link.

 Raised PSA after Radical Nerve Sparing Prostatectomy’s 

Prostate cancer is usually slow growing so it is more likely that the cancer is still contained locally and there is every chance that your husband can remain on the curative pathway.

Hi, the wait was unexplainable to be honest. Initially it was due to having a CT, then the wait for MRI and so on for other tests. However once all those were complete the wait for surgery was horrific, at one time we even received one of those apology letters from NHS as it was over their acceptable timeframe but what can you do? He was even on a cancellation list. Didn’t actually get the surgery till I got a bit rude and forceful at one of the appointments. Anyway it’s done now so just clean up mess from here and focus on where to go next. 

Lymph nodes were removed at time of surgery so that wasn’t known before. Gleason was expected to be 3 4, not 3 5 so that’s also new news. 

Thanks for info, I’ll see if I can find the thread you mention. 

Thank you ever so much for replying. You are a godsend, that thread is exactly the sort I have been hoping to find. Much appreciated. 

My husband was given a 70% chance of recurrence within 5 years so we expected radiation further down the line, just didn’t expect to be at this point a mere 5 weeks in. Very distressing and can’t help be angry that maybe if he had treatment in a better timeframe we wouldn’t be here, he was only 52 at diagnosis, 53 now and they knew early on it was aggressive. But onwards and upwards I guess. Thank you for your encouraging words, they really help and mean a lot

Hi 

I’m really sorry it took so long for your husbands treatment but as you say that’s past and focus is on the now. 

I can see from another thread you found the person with similar circumstances so hopefully you can help each other with info. 

Although not what you wanted after surgery I’m sure they should do the PSMA and I would push for an early one for you to get some Clarity

Wishing you all the very best

A . 

Thank you, yes all there is now is to focus on next steps. Glad to have been pointed in the right direction as others experiences are invaluable as we all know. Best wishes to you and everyone else on their continued path of wellness