PSA surprisingly high at 1.89 post radical prostatectomy

Guy, as your psa was only 4.3 before the op for it to be 1.9 after means there was only 2.4 removed by the op. Although it might have increased between measurements.   2.4 seems a low level of psa, most people would think it fairly normal at 2.4 yet you say it was extensively diseased.  Some cases do generate less psa and this disease seems to bring surprises.

Trends of psa measurement are significant but if I was you I wouldn't want to wait too long.  Granted I'm a super cautious patient.  I liked what Lyn said about Chemo and Andy suggesting better scans.  I'd be wanting detailed scans, chemo, HT and RT.  Once you start the HT your psa trend will no longer be significant as an indicator unless by some freak it still goes up.

It might seem a bit detailed but using exact dates can make a difference when you're talking about tight timescales - May to July may only be just over 4 weeks.  It's useful filling out your profile.  

All the best, Peter

p.s.

This is an interesting thread with 3 things I'd not read before:

1. That it can spread to the urethra.  I asked the surgeon if it could spread to the sphincter as that seemed more likely than the urethra for a tumour in the apex and he said not usually which I guess means it could.

2. That during the op the surgeon can spot a tumour that has spread to the bladder.

3. That you might fatally weaken early spread by early chemo.

Guy,

Sorry you find yourself here, but this forum is a fountain of support and knowledge.

It's unfortunate the PSMA scan didn't show anything. The reliability of both Choline and PSMA PET scans to find PCa drops off as PSA falls below 2, although PSMA is better than Choline in this range. Neither of them are good at finding PCa very near the bladder, because the bladder tends to light up bright in the scans as the kidneys excrete the tracer into the bladder anyway and it 'whites out' the area immediately around. Guessing here, but this might suggest urethra at the the prostate apex is a likely candidate, as that will now be joined on the bladder.

It would be interesting to have a carbon acetate PET scan, because it works better than PSMA (or choline) at PSA < 2, and it's not excreted by the kidneys so it doesn't light up the kidneys and bladder and 'white out' the surrounding area. Unfortunately, I don't know of one in the UK (even privately). Even if it found PCa where the ureathra joins the bladder, I'm not sure the treatment would be any different than if the precise location isn't known, so although interesting to know, probably not useful for steering treatment direction.

I suspect you will have to have HT and RT to the prostate bed including the urethra. This is always a possibility following a RP if the margins are not good. Did you know it was T3a before the RP, as RP is not usually offered for T3a staging.

Definitely continue cycling during HT. I think it may suppress some of the HT side effects. I've had no fatigue, or hot flushes as yet, maintained muscle and only had very small fat gain, and I've been on it over 10 months, but also watching carefully what I eat. My consultant is also very in favour of exercise and says it's better than many of the drug treatments available. He's associated with a charity group (Prostate Peddlers) to get patients who aren't exercising cycling, and asked me along to their open day earlier this year, although as a regular cyclist, there's no point me attending their regular training for new cyclists.

I was intending to continue cycling during the RT too, but Mount Vernon RT have said not to cycle because of inflammation to the prostate cause by RT and cycling making side effects worse, which came as a surprise to me. Other exercise is OK, except anything working very hard on muscles around the pelvis as they will be getting inflamed from RT. (Also advised against swimming, as both excessive soaking and the chlorine can make the RT skin burn worse.) I'm only 1 week into 5 weeks treatment (4.5 weeks RT followed by HDR brachytherapy). I've been to the gym a couple of times this week, but that only adds up to 1000kCals, verses my cycling which is typically 4000kCals/week. I tried a stint on my exercise bike this morning after turning the saddle around backwards so nothing against perineum), but I was bored after 2 mins and gave up. I might look for a suitable no-perineum pressure saddle, put it on my mountain bike, and use that just on the road, for minimum possible prostate pressure/vibration.

I've heard cycling too soon after RP with nerve sparing can wreck the nerve sparing, so yes, be careful before you start again.

I've not found the side effects of 10 months HT too bad. I did a post on it:
https://community.prostatecanceruk.org/posts/t21321-Hormone-treatment-lack-of-support-from-NHS#post216465

As it happens, my OH had spread to the bladder; fortunately this was spotted during the op, the cancer was removed and the bottom of the bladder was remodelled. When he had a recurrence 2 years later we agreed to salvage RT which included the bottom of the bladder and so far (7 years on) it seems to have been successful. However, we had the benefit of a target based on pathological data and it seemed worth the risk. Probably unlikely to get full remission as the PSA still hovers around detectable but he is happy not to engage with that thought until he has to :-/

Peter, thanks for the nudge to fill out my profile with more details.  I’ve just done that to give the full story.

If that is clear and given you had positive margins I can see some logic in Salvage RT.

Thanks Gordon, interesting post and article. I would like to understand the trajectory of the PSA and asked the oncologist what we should do if it was stable at current levels. He said he thought he’d  be anxious to leave it more than 3 months. So maybe that’s the answer. Another PSA or 2 to establish trajectory as another input to the decision. 

Appreciate your post and the article, which I need to spend more time reading carefully. 

Edited by member 14 Jul 2019 at 15:41  | Reason: Not specified

GuyM,

I would ask onco if it makes sense to try to get your PSA down to 0.1 with hormone therapy before starting the RT. Some research has shown a low pre-RT nadir significantly improves outcomes, and that's what I just did as a result of reading those papers, which meant delaying my RT by an extra 8 weeks. Only delay RT whilst PSA is reducing at a significant rate though. Admittedly, this was for people with a prostate, but with your PSA level, you clearly have significant prostate cells somewhere.

I'm prescribed 20mg/day (the max allowed), but suggested initial dose was 20mg twice a week (which is the NICE recommendation), and adjust dose to symptoms.

My liver didn't like tamoxifen very much, and it would eventually have given me non-alcoholic fatty liver disease (about half the women on tamoxifen for 5 years get NAFLD). So I set about minimising my dose. Breasts grow in bursts, so I only took it during a growth bust.

Tamoxifen has a long build-up, about 2 months to get to working level, and 3 months to get to final level. So if you are taking it only when needed, it's going to take a long time to start working, and to counteract breast growth, you don't want that because it works best as soon as possible, and slower the longer the breast growth has been there. I built a mathematical model of the blood concentration based on dosing and data from the manufacturer's tests, and worked out best dosing for me was to take 20mg/day for 8 days to get to final level within 8 days rather than 3 months, and then switch to 2 x 20mg/week, until growth was reversed, and then stop taking it. When I stop, it decays away in 3 months. If I need to start it again before 3 months, I can calculate a reduction in the initial 8 days due to the residual I still have present. This worked well, and my liver enzymes probably only went abnormal for short periods (I only have two liver function samples whilst on tamoxifen, but they fit what I'd expect).

My consultant and GP were happy for me to do this, and it got my liver enzymes back where they should be which pleased my GP, and prevented the moobs which pleased me.

I also talked with a researcher an Mount Vernon hospital who knew about using tamoxifen in men, and she didn't think anyone had tried doing what I was doing before, and jokingly offered me a job!

Since switching from bicalutamide to Zoladex, I haven't needed any tamoxifen. Bicalutamide is the worse HT drug for breast growth, but it can happen with any of them, so I might still need it occasionally on Zoladex.

Some people seem to start on 1 x 20mg/week, and get dose escalated to 2 x 20mg/week or higher if that doesn't work. However, no one seems to think of doing an initial dose escalation when it's given in response to symptoms to get it working faster than in 2 months.

It's reported to work in 70% of men with HT-induced breast growth. I suspect some of the failures are probably down to widespread lack of understanding of the way dosing works and the long rise and decay in blood levels.

That sounds very low. NICE recommends 2x20mg/week. Some people start on 1 x 20mg/week.

It's rare to find anyone being prescribed anything other than the 20mg tablets, because the other sizes are about 40 times the price.

As I said, it takes about 3 months to build up to the steady level in your body, but that doesn't matter if you start taking it with the bicalutamide, because it takes around the same time for gynecomastia to start on bicalutamide. The initial dose escalation is relevant when you start taking it in response to gynecomastia having already started.

I wasn't told not to drink, but as it happens, I don't drink anyway. I suspect the headache and nausea are most likely down to the cialis (tadalafil). I have taken all 3 of those together (albeit low dose bicalutamide and low dose tadalafil) without any side effects other than the expected hormone therapy side effects.

Edited by member 06 Aug 2019 at 16:04  | Reason: Not specified

I've been on 150mg/day bicalutimide since August 2018 and experienced significant breast growth in the last few months. My tamoxifen dose has been increased to 10mg/day to try to stop it, but not much impact so far.

Best of luck with the treatment,

Chris