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PSA surprisingly high at 1.89 post radical prostatectomy

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User

Posted 14 Jul 2019 at 08:29

Have you had a bone scan? Is it worth considering? Some PCA doesn't express PSMA but a bone scan detects the repair activity associated with metastasis.

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

User

Posted 14 Jul 2019 at 08:53

Thanks Jonathan, no bone scan so far. Agree that there are some positive margins just hard to believe these generate 1.9 PSA alone. But in the search of the source, a bone scan could be helpful.

User

Posted 14 Jul 2019 at 10:53

My post op psa was 1.5 and 2.4 three months later. However I had 18 lymph nodes removed and 5 were cancerous. I also had a small positive margin near my bladder. Oncos exact words each time “ The RT is not expected to be curative but will prevent a recurrence in that area which can be very very nasty “.

I’m not a scaredy cat. I just didn’t want anymore aggro and the possibility of loads more side-effects. Four years from surgery and still zero signs of proper spread. I know it will come and it affects my state of mind a lot , but I’m so busy with a nice job , and getting my dream car , and holidays galore for us all. Such a shame really as I look 100% fit , have full continence and EF. I’d be in such a good place if they got it all :-((

If life gives you lemons , then make lemonade

User

Posted 14 Jul 2019 at 12:06

hi Guy

and Chris. I was spending a few minutes relaxing in the garden.

maybe you've seen this .

https://ascopubs.org/doi/full/10.1200/EDBK_159241

Nothing is predictable and keep challenging/ questioning which I truly admire 're. Chris.

2016 article. USA I found it enlightening. You have both presented at a young age.

Nothing Guy to suggest yours has spread at all.

I'll pose a question. Guy? What if your PSA actually remains at or very near 2.00 or goes down ?

Are you willing to wait 2 or 3 months?

I agree re. flow although I was asymptomatic, yours was obviously becoming extremely slow.

I actually still have 3 monthly PSA test, I think they should be Annual now, however I'm fine with quarterly. Letter arrived yesterday. 0.02 . It has been 0.01 and up to 0.02 and down.

My view and wife, quite relaxed and pragmatic after +3yrs . If it's going to move to 0.04 or higher , we might weĺl know sooner than later. I realise these are super sensitive.

Gordon

User

Posted 14 Jul 2019 at 12:59

Thanks Gordon for the info. Very interesting. My GP has become more helpful than my Onco and suggesting we treat each symptom as it comes. He is not condemning me to purely systemic treatment which I suspect I will find intolerable given my QOL outlook. Even though my psa has risen from 1.5 to over 83 nine months ago , I’m now glad we are no longer testing it. There is literally no point at all is there ? It’s only going up. My biggest fear is that scans can only be 6 monthly due to kidney damage from PET tracers and CT contrasts etc. I’m in a pretty good place though tbh. In a far better place than some men who are essentially cured actually. You just have to get in with it and distract yourself.....

If life gives you lemons , then make lemonade

User

Posted 14 Jul 2019 at 15:39

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

User

Posted 24 Jul 2019 at 21:38

Hello all, well a joint consultation with surgeon and oncologist and a forward path has been determined. I'm going to take bicalutamide for 12 weeks till early November when I'll start 6 1/2 weeks of daily radiation on the prostate bed, All to be done just in time before Christmas. Yay!

I've had another PSA today and that's come back at 1.82 ng/mL - so seems like it's been stable (but inexplicably high) since prostatectomy. Maybe what's left is just a "juicy PSA producer" - I think that's to proposition we will test.

Surgeon and Onco have persuaded me that we need to attack what we know to be a problem - namely residual cancer in the prostate bed. Let's deal with that first via radiation, and adding hormone treatment increases the chance of a cure by 10%, and as I'm looking for a 30 year solution, I'm prepared to contemplate the possible side effects of hormone treatment to secure that incremental 10% chance.

Now, my question to you all. Where is the best radiation centre in/around London. I'm considering The London Clinic (near Harley Street - am lucky to be covered by BUPA) or the Marsden at Sutton. I'm attracted by the flexibility that private care will offer for appointments etc, and understand that the clinical outcome at either place is likely to be similar.

Interested in the community input to the choice of radiation treatment centres in central or south London.

User

Posted 24 Jul 2019 at 23:12

Can you have it privately at the Marsden?

We paid for RT at our NHS hospital because it is a centre of excellence; the income generated is ploughed back into oncological research at the hospital and university.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 25 Jul 2019 at 04:09

I had my PSMA scan at the London Clinic and I’ve recently been to the Marsden where I am taking part in a research study. London Clinic almost felt like a hotel. The Marsden is a typical, sprawling nhs facility. I don’t necessarily think either one would be better than the other treatment wise.

Which area of the prostate bed are they treating. Unlike you, my PSA was low post-prostatectomy. It rose from 0.014 to 0.023. Three rises in a year and so my oncologist recommended prostate bed radiotherapy. She told me she would only treat the prostate bed itself, but sometimes would include lymph nodes further up the bed but only if there was evidence to do so. My PSMA scan, which was a gamble at such low PSA levels, showed no cancer in the prostate bed but some in two lymph nodes. The moral of the story is that without the evidence of the PSMA scan, the wrong area would have been treated.

are they advising a PSMA scan - if you can get that done privately, I’d recommend the London Clinic. Also, are you staying on bicalutimide during and after treatment? I’ve been on bicalutimide for 17 months now, one more to go until I’ve finished.

ulsterman

Edited by member 25 Jul 2019 at 04:12 | Reason: Not specified

User

Posted 27 Jul 2019 at 06:34

Thanks ulsterman, I’ve had a PSMA scan which was clear. Not sure what the plan is for bicalutamide when I start radiotherapy.

Thanks for commenting.

User

Posted 27 Jul 2019 at 06:55

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.

User

Posted 27 Jul 2019 at 09:19

Andy, thank you.

I had had a joint surgeon/oncologist meeting earlier this week and we developed a treatment plan. We’re on the path you suggest.

I’ve got my 150mg bicalutamide and am about to start taking them - today/tomorrow. I’ll do HT in an effort to get the PSA down between now and the first week of November, when I’ll start the RT, which will take me perfectly (?) up to Christmas. Delaying RT whilst HT progresses also has the important benefit of delaying the RT till almost 6 months after surgery to allow healing to progress. RT on relatively new wounds is not a good idea.

Surgeon and oncologist feel that the source of PSA will be the prostate bed and urethra, and that I’m a ‘juicy PSA producer’. The HT will hopefully reduce PSA which will then be followed by RT.

I’ve decided to take the RT at The London Clinic.

Edited by member 27 Jul 2019 at 09:26 | Reason: Not specified

User

Posted 27 Jul 2019 at 09:37

My husband ( T3a 3/4 ) had his surgery at the London clinic last year and his experience from the psa test to his annual check up yesterday has been absolutely super. We are hoping that he will not need any further treatment as psa test remain “undetectable” though we have had some stress between ultra super sensitive ( 3 monthly test in Jeddah where we work) which has gone from .002 to.01 . The London clinic test to 1 decimal point and so he is less that 0.0 there . However surgeon not a great fan of ultra super sensitive. However was happy to order an MRI to reassure us ( mainly me ). I hope you have a positive experience at The London Clinic and best of luck with the RT/HT

I hope you have a really positive experience at the London clinic .

User

Posted 27 Jul 2019 at 09:44

Did they offer you either tamoxifen or RT to the breast buds before you start the bicalutimide? RT only works before or in the first week or so ... tamoxifen works best if you take it before you have any problems. Many men have problems accessing either treatment on the NHS but if you are going private it should be easier. Having said that, J’s onco refused point blank on the basis that bicalutimide doesn’t cause breast growth. It does.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Jul 2019 at 09:55

Thanks LynEyre, yes I should also have also said I have been prescribed Tamoxifen - a once a week dose to start with from the get-go, starting today/tomorrow too.

Edited by member 27 Jul 2019 at 09:55 | Reason: Not specified

User

Posted 27 Jul 2019 at 09:59

It took me 3 months to start developing breast buds on bicalutamide.

I did some dosing calculations for tamoxifen, and I recon it takes 2 months to build up a working level of tamoxifen in your blood to stop/reverse breast growth (tamoxifen has a very slow build up and decay in your body), so ideally you want to start taking it with the bicalutamide.

When you've been on tamoxifen for 3 months, get blood tests done (FBC, LFT, GGT) to check your liver is coping with it. You might as well add PSA in there too!

User

Posted 27 Jul 2019 at 11:09

Thanks Andy, that’s the plan. 3 months bicalutamide and tamoxifen with PSA test before the RT starts. I’ll suggest we add liver function tests too at that point. How much tamoxifen did you have, out of interest?

User

Posted 27 Jul 2019 at 12:03

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.

User

Posted 27 Jul 2019 at 12:42

Plus you are quite unusual in having seen breast reduction - for most men, it is an irreversible side effect which is why some men are entitled to have breast reduction surgery on the NHS.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 27 Jul 2019 at 13:04

Lyn,

The research papers I read on its use for gynecomastia suggested it reverses breast bud/gland growth, but only growth within the last year, not any older growth. Also, new growth reverses fastest, which is why you want to hit it quickly if you start taking tamoxifen in response to symptoms rather than prophylactically. As you say, it certainly worked for me. It can't reverse the fibrous tissue growth which forms to support the glands as they get larger. I doubt it can reverse breast fat growth either, but I never found anything saying that one way or the other.

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