Finally elected for RP late January as was not possible for me to access SBRT unfortunately given my specs.
Now 2 months post RP, PSA <0.02ng/ml, no positive margins, no EPE, upgraded from a G3+4 (30%)=7 to G4(60%) +3=7 with 40% of the G4 described as cribriform. Lymph node dissection were all negative as were the SV. There was PNI found and the histology report indicates Grade 3.
Zero incontinence from the moment of catheter removal but increased urgency and frequency which has improved significantly since although nocturnal urgency can still arise.
Complete ED but signs of life stirring in the last few weeks although can be painful. Tried Cialis 5mg daily but found I was getting strange pains in my heart area so I stopped. I've been prescribed Aprostadil cream for the moment rather than injections so I'll see how that goes.
Anybody any information on the cribriform finding?
It appears to have negative prognostic value but if the RP got the whole tumor contained within the prostate gland it shouldn't be an issue, I hope.. oh yes, and the pathology report found a previously undetected G3+3=6 tumor on the other side of the prostate as well.
Hoping I got this sorted before the horse bolted..
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Atlantic77
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Actually, drugs like Cialis (PDE-5 inhibitors) were recently proved to have less heart side effects than alprostadil. But individual cases may differ, of course.
Yes I tried Viagra and it does seem to be less troublesome although not very effective but that's not unexpected given the time required for healing post RP..
Did you have nerve-sparing surgery? Have you asked the surgeon if he managed to save them? If the nerves are left the erectile function usually returns.
Congratulations on a terrific outcome of your surgery. From what I've heard from other patients who have had surgery, "signs of life stirring" is a very positive sign. A friend of mine who had a prostatectomy at Johns Hopkins experienced "nothing" when looking at his fine looking naked wife but, over time, he had a complete return of erections. I also read a doctor's claim that his patients can continue to experience improvement for up to two years after surgery. By then, he said, they'll have already had whatever recovery they're going to get.
Knowing nothing about cribriform I looked it up and found this:
Thank you Alan, that sounds hopeful.. Yes I saw that article about cribriform. If nothing else it makes me happy to have acted sooner rather than later.. although I did drag it out a bit...
Hope Springs eternal! My surgical cohort of four had same surgeon who performed same robotic procedure--- four different outcomes regarding urinary and potency issues. I got lucky and had wood the morning after the catheter was removed. My redneck girlfriend said God gave me an extra sex nerve.😀 good luck!
Hang in there on the ED.. no pun intended. It took me until six months to be able to achieve anything like an erection and that was with effort. At 12 months it was a real erection but again with effort and not long lasting. At 18 months I can get an erection with cuddling and often wake up with one. My doc notes that nerves heal very slowly. He prescribes Cialis 5mg for daily use to keep blood flowing down there and either Cialis 20mg or Viagra 50mg for use as needed the former lasting longer but being slower acting.
Hi there Just wondering 4 months on from this thread how you are doing???? Dave had RALP 12 months ago and ED has improved greatly, with every few wks that pass we get more grateful and reassured that surgery was a wise choice. Although my hubby was 53 he was a young 53 and faced with possible permanent ED he was so scared but apart from the scars on his tummy our sex life is almost back to where it used to be. Nocturnal erections almost daily now. Still using viagra occasionally but Dave seems to think 6 months of pump rehab saved him. Nerves need time to repair, I know it now for sure.
You are so young at 43, how are you doing and has your psa come right down☘️
Hi D17, glad to hear things are going well for you both.Yes I had my RP at the end of January so coming up to 6 months now.. ED is improving very slowly with the help of daily Cialis 5mg or on occasion Viagra 50mg.. not the same as before but, as you know, the nerves need time to heal apparently (I also had lymph node dissection as there was suspicion of EPE from MRI before surgery, all were negative).It is essential to keep the blood flowing post RP with whatever means necessary so your husband is most likely correct about the vacuum pump. I tried the injections but while effective I wasn't a fan so prefer to stick with the meds.
PSA is still undetectable at < 0.02 at 2nd blood draw just under 6 months out so thankful for that...
Hi Atlantic77, wishing you the best. I've read your posts and your case sounds so like mine. I live in the Czech Republic, and had a higher PSA found accidentally when I was around 34, now 43. I had 4 biopsies (no result yet from the latest), one finding nothing, another GS6 in 1 core, and a year later GS6 in 3 cores. Been on AS. Several MRIs were done, but nothing was seen. Just had another MRI which suddenly shows PIRADS2.1 score 4, 7mm in what looks like the area where the biopsy was positive the last time, went for the 4th biopsy (the PIRADS 4 leisson also visible on TRUS which isn't a good sign I guess), and waiting for results. I think that's it and will need to seek treatment. Maybe there's something to the theory I read here and there that it gets more aggressive and faster growing at a young age. My PSA fluctuated over those years 1.5-3. I was fighting with prostatitis symptoms (itching, scratching in the urethra) during the whole time, and it looks like I managed to put it under control a year ago (mostly curcumin supplements, D3 but some others too, not taking anything for many months now and am finally symptom-free) while on the other hand, the beast is gaining momentum. Just an interesting coincidence.
What Gleason score did your most recent biopsy detect?
Be careful with curcumin supplements as they can lower PSA levels without effecting the tumour itself thereby lulling one into a false sense of security.
Still waiting for the latest biopsy result, samples taken 2 weeks ago, expected already but not there yet. Previous biopsies GS6 but no PIRADS leisson, so now with PIRADS 4 I expect worse.
Not taking curcumin for several months now, last PSA 2.5. Even before I stopped taking supplements 3 days before blood test which as understood from some comments here should be enough.
Your PSA is still quite low but of course there are a minority of PCa tumors that don't express much PSA.
In one sense it sucks to be dealing with this disease at such a young age, but then again thanks to early detection we have a higher probability of successful curative treatment.
I get the impression that my PCa was indeed getting more aggressive with time as per successive biopsy results and the pathology report. It seems I got it treated in the nick of time. Without early detection through an unscheduled and fortuitous PSA test it would most likely have progressed and metastasized unbeknownst to myself.
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