Raised PSA after Radical Nerve Sparing Prostatectomy’s

Hi RoutePack6 - thanks for sharing.  Indeed, this is a strange one.  It’s interesting that you were still on AS until 2024 & a PSA score of 19 (after seeing Gleason 3+3 back in 2017).  Unsurprisingly, your Gleason has changed to 4+3.  Don’t get too freaked out but the cribriform: many Gleason 4s have this architecture, and it is not always reported on the biopsy.  However, when it’s reported, it is the trigger to go for treatment as the looser architecture can result in micromets breaking away and causing their mischief elsewhere in your body (usually lymph & bones).  The earlier movement would be (obviously) to the pelvis, so I would think that pelvic radiotherapy is on the cards. Don’t worry, cribriform or not, a dead cancer cell is dead whatever it’s architecture and you have a very low PSA so very likely to be in the prostate bed and/or pelvis, which will be fully covered.  The PSMA PET scan will be invaluable to you (and, hopefully, reassuring) if it shows up the rogue cells.     AW

Hi RoutePac6,

I had a similar situation after my Radial Prostatectomy, expected PSA to go to 'Undetectable' but remained stubbornly high.

Had PSMA which showed 2 cancerous  Lymph nodes. Surgeon advised a 'Super Extended Pelvic Lymph node dissection' meaning EVERY lymph mode be removed. There were found to be 3 nodes with cancer!

PSA still remained above where it should be though less than 1. The only explanation was that as the cancer had escaped the capsule some cells had gone to the Lymph nodes and others gone on a wee tour!  I requested a second PSMA but was told that as PSA was so low the scan would not show up where the cells were residing. 

Now on Hormone therapy and PSA at last 'Undetectable' but with all the side effects associated with this treatment.

Like you have full bladder control but the Prostatectomy resulted in one of the nerve bundles (think there are 5) being damaged.

Hope your PSMA shows what is going on.

OMG Johna1954 that’s a tough set of cards you got there - did your consultant say why they didn’t go for salvage radiotherapy to the pelvis after the prostatectomy failed?  Presumably there was a medical reason why you couldn’t have radiotherapy?     AW

Hello RoutePack6 

A warm welcome to the Macmillan online Prostate community, although I am so sorry to find you here. I am Brian one of the Community Champions on the group. Indeed I am just starting the 4th year of my personal Prostate Cancer journey.

Your post makes some interesting reading. I don't think you need to worry about "cribiform", but you need the results from the PSMA PET scan. Once you find where the little bug*ers have gone on holiday your team should be able to treat them. From reading your post I am assuming they have stayed "local" and I would hope some Hormone Therapy and a touch of Radiotherapy to the pelvis and lymph nodes may clear the problem. The good news is the PSA isn't too high.

I hope this helps. Please feel free to come back with any questions. Please do let us know how you get on at your meeting on 31 January 2025.

Best wishes - Brian.

As far as I remember I was not offered this option. Having taken the decision to have the Prostatectomy, deciding to have the SePLND seemed to make sense. I wanted rid of anything that might be causing a problem. Having all the lymph nodes removed seemed excessive but surgeon felt that that was the best option. The PSMA scan while good is not great at detecting (or was not when I had it and may be improved now) the very small amounts of cells. Case in point 3 lymph nodes positive when only 2 showed on scan.  Was told that the little Bugg..s could be anywhere hence the Hormone Injections.  JA

Hi Alpine Wanderer & thanks for replying to my long winded ramblings.

I should have added to the list my full Gleason score so here it is as written by my Oncologist.

Nerve sparing radical prostatectomy - microacinar adenocarcinoma Gleason 4+3=7 Gleason grade group 3, completely excised pT3b pNX R0 PSA 8.4.

I had read about Lymph nodes and bones as the first point of call for it, do you know if Pelvic Radiotherapy affects you continence or not, obviously my priority is to try and sort the beast out one way or another but the more I can find out the better for my mental well-being.

Many thanks once again.

Hi Johna 1954 & thanks for your reply.

That’s interesting to read your experiences, I guess the PSMA will iron things out.

A couple of questions if I may.

How is the Lymph Node Dissection performed, is it a hospital stay etc?

What are the side effects of HT like?

I had 1 bundle of nerves taken away but the others were left alone.

I'm glad to hear you have full bladder control, it does make a difference to your state of mind doesn’t it.

Many thanks once again and please keep me updated on your progress.

Hi Millibob (Brian) & thank you for replying to my message.

I have posted a reply to Alpine Wanderer quoting my full Gleason score, I’m not sure it has stayed local or not so I guess the PSMA will tell me that?

I am completely paranoid about this PSA business and why I got a 0.6 reading when all the others are around 8, I’m terrified it has become metastatic ( which I’m sure it has ) and in my mind I feel as though that’s me done!

I hope you are coping with your journey and fight against this monster as I do everyone else on here and in the wider community.

Very Best Wishes 

RP6

Good Evening RP6 (RoutePack6) 

So I have had Radiotherapy to the pelvis as I had a "shadow" there and my oncologist said "let's "zap" the pelvis and pelvic lymph nodes whilst you are on the sunbed". During RT in the latter fractions my urge to pee increased but I am fine now 2 years on and indeed was fine just after Radiotherapy finished. (You can read my full journey bu clicking on my name or avatar).

Try not to worry, it's only just over a week before you get your results, I am sure you will be fine. Remember the fact that 98% of men with Prostate Cancer die WITH it not OF it.

As for the PSA testing, 3 by your team are consistent, the odd one is the private one. Errors happen. i think I would trust your team.

Best wishes - Brian.

If you read my bio, you will see that I tolerated full pelvic radiotherapy very well (up to L5), and it’s nearly a year since I had it.  No GI or GU negative side effects so far.  No effect on continence whatsoever.    AW