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Biochemical rec

User
Posted 19 Jun 2019 at 18:26

Having reached 0.03 in November 2016 (on HT), my PSA stabilised at 0.03 (off HT) in December 2017 where it remained until February 2018 when it came in at less than/equal to 0.01. It remained there until February 2019 when it measured a definitive 0.01 and thereafter rose to 0.03 in May 2019. (I moved hospitals from Guys and St Thomas' to UCLH in February 2018 which may explain that particular drop?)

My Testosterone on HT was undetectable and has risen very gradually to flat-line at 18.8.  Whereas I completely missed the tiny rise from less than/equal to 0.01 to 0.01, I am allowing the subsequent 0.01 to 0.03 rise get to me.

My treatment pathway is a bit long-winded and rather than bore you (and lose the point completely) by repeating it all here, I'd kindly invite you to click to my profile where it is all as up-to-date as it can be currently.  Also I tried cutting and pasting but it doesn't work here!

The rise to 0.03 is causing me pretty constant anxiety. I see my oncologist again at the end of August with a fresh PSA test. I'm expecting the worst (a further rise) and hoping for the best (a drop back to 0.01 or below). I'll even settle for a no change!

If any of you fine people have had a similar experience set against the backdrop of high-risk locally advanced disease, I'd be more than appreciative of any wisdom you'd be prepared to share with me please?

Many thanks in anticipation

 

  

User
Posted 21 Jun 2019 at 22:28

Ulsterman’s situation is rather different to yours - his post-op pathology indicated that there might be cells left behind and his oncologist would probably have preferred to do adjuvant RT immediately but he made a choice to wait and see. I really don’t think he was given the scan or the salvage treatment because his PSA was 0.02; it was because the medics already knew he would probably need it.

It might help to be clear in your head about what you would expect to happen if your PSA continued to rise? Realistically, if the PSA goes over 0.1 and you are clearly in biochemical recurrence, they are unlikely to suggest you go back on HT yet because the earlier you start taking it the earlier it will stop working. Some oncos will restart HT at 5 or 10 but some will recommend waiting even longer. Unlikely that you would be offered chemo while the numbers are so low. You won’t be able to have any further RT to the prostate bed which is where any leftover cells would most likely be found. So you are likely to have this worry for a very long time yet even if your PSA does rise a little bit in August. 

Also worth noting that John’s PSA rose to 0.11 a couple of years ago but has happily dropped back down and settled at <0.1 or 0.1 ever since. Onco says he may just have naturally high production of healthy PSA or it could be a slow burn recurrence but since there is no treatment, he has put it to the back of his mind. 

Edited by member 21 Jun 2019 at 22:41  | Reason: Not specified

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

User
Posted 27 Sep 2020 at 14:44

Hi Chris. Thanks for your reply. I think that in part, at least, the threshold for informing the best time to carry out a scan is informed by the available technology. As I understand it, the more commonly used PET scans are unlikely to detect anything at PSA levels of less than 1.0 whereas the newer PET PSMA scans can sometimes find activity at levels of 0.20 and upwards. Fortunately, my hospital (UCLH), uses PET PSMA whereas many centres, as yet, don't.

Let's hope you never reach 1.0 so the scan can be avoided altogether!

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User
Posted 19 Jun 2019 at 23:26
Check out my profile, I am currently 0.031 it's all ultrasentive values and as Bollinge would say so long as it's less than 0.1you are cured!!
User
Posted 20 Jun 2019 at 07:49

Originally Posted by: Online Community Member
as Bollinge would say so long as it's less than 0.1you are cured!!

My hospital only tests PSA to 0.1, so <0.1 is classed as ‘undetectable’. But my friend had the op around the same time as me, and he has had quarterly super-sensitive assay tests thereafter, which were 0.01, 0.04 and 0.08. Clearly something is going on there.

Ironically, I could be in the same boat! (Although I did have a test at the Royal Marsden which tests to 0.04, and it came out as <0.04). Ignorance is bliss.

Cheers, John.

User
Posted 21 Jun 2019 at 22:05

Thanks both and I hear (and appreciate) what you say. There is, however, a guy on here (Ulsterman, I think) who had lymph node mets detected by PSMA with a PSA of 0.02. Certainly two sides to the ultra-sensitive test debate.

The registrar I saw at my last Oncology review hinted that the rise could have been provoked by my recent penile prosthesis surgery  (1.5 months before the test date). She said (and I quote) "..they've been rummaging around in that area and that may have had an impact". I'm not convinced and the use of the highly specialised terminology (rummaging around) didn't exactly add much weight to the opinion!

 

User
Posted 21 Jun 2019 at 22:28

Ulsterman’s situation is rather different to yours - his post-op pathology indicated that there might be cells left behind and his oncologist would probably have preferred to do adjuvant RT immediately but he made a choice to wait and see. I really don’t think he was given the scan or the salvage treatment because his PSA was 0.02; it was because the medics already knew he would probably need it.

It might help to be clear in your head about what you would expect to happen if your PSA continued to rise? Realistically, if the PSA goes over 0.1 and you are clearly in biochemical recurrence, they are unlikely to suggest you go back on HT yet because the earlier you start taking it the earlier it will stop working. Some oncos will restart HT at 5 or 10 but some will recommend waiting even longer. Unlikely that you would be offered chemo while the numbers are so low. You won’t be able to have any further RT to the prostate bed which is where any leftover cells would most likely be found. So you are likely to have this worry for a very long time yet even if your PSA does rise a little bit in August. 

Also worth noting that John’s PSA rose to 0.11 a couple of years ago but has happily dropped back down and settled at <0.1 or 0.1 ever since. Onco says he may just have naturally high production of healthy PSA or it could be a slow burn recurrence but since there is no treatment, he has put it to the back of his mind. 

Edited by member 21 Jun 2019 at 22:41  | Reason: Not specified

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

User
Posted 07 Sep 2019 at 13:43

Hi all,

PSA is up again from 0.03 to 0.07 now so, unfortunately, it looks as though it's part of a trend rather than a blip as we had hoped. Somebody forgot to tick the "Testosterone" box on the bloods request so I'm not sure if that's plateaued or still rising. 

Lyn - Thanks for your comments which I thought I had acknowledged at the time but clearly I forgot to press submit or something! I asked the Registrar if the trend, to date, might be suggestive of localised recurrence or micro mets. She said that this cannot be determined from PSA trends alone. I note your comment that the pattern of my PSA movements was suggested of residual localised disease. May I ask what the source of this is please as I would like to read up on it?

I'm having treatment for my anxiety and depression and I really hope I can get on top of it before it gets the better of me.

My next Oncology review (with PSA and T) is at the end of November. Trying to cast that to the recesses of my mind for now.

 

User
Posted 08 Sep 2019 at 09:34

Peesee

We're very similar and have followed a similar treatment pathway.   I'm a bit younger than you.   I was T3b and Gelason 9 after surgery, with positive margins.  I've had my salvage RT and bicalutimide, which I stopped taking a month ago.  Now I'm on my own, waiting to see what will happen.

My oncologist has said that she will wait for a trend to develop if my PSA starts to rise, with no new scanning until at least 1.3.  Hopefully, it never does get there.  She also said that some men experience a few rises and then PSA settles for many years.  Unfortunately, it's all an anxious waiting game.  My first PSA test without the benefit of HT will be in October.

I'm currently awaiting a referral for a penile implant assessment so I might get in touch before hand to ask about it.

Ulsterman

 

User
Posted 09 Sep 2019 at 17:32

Hi Ulsterman

Thanks for your message and sorry to hear about your journey. As you say, many similarities.

I've just had the follow-up letter through from my Oncology review of 28th August. Seems my Testosterone (T) has increased again and is now 22.1 (up from 18.9 in May). This may go some way to explaining the rising PSA. Hopefully once the T reaches a plateau so too will the PSA. 

I note that you have just finished your course of Bicalutamide. From memory this doesn't kill your T but rather stops it feeding any cancer cells it finds. Have they been monitoring your T levels and if so, how are they?

More than happy to talk as much or as little about my implant and your prospective one. Just shout when you're ready. I had mine done at UCLH and I have to say I am more than happy with it!

My origins are in Dublin's fair city but I'm sure you won't hold that against me :-)

PeeSee

User
Posted 09 Sep 2019 at 20:45

Peesee 

They have never monitored by testosterone.

i must say that I feel so much better now that I’ve stopped the bicalutimide 

i’ll pm you about the implant.

your’re from Dublin, I’m from Belfast - so long as we don’t mention Brexit i’m Sure we’ll be finešŸ¤£

User
Posted 20 Sep 2020 at 16:03

It's been a year or so since I posted about my suspicions that I was approaching biochemical recurrence territory. Here's what's been happening in the meantime:

PSA progression: 

09/2019:  0.07
11/2019:  0.10
01/2020:  0.09
05/2020:  0.20
06/2020:  0.22
07/2020:  0.27
09/2020:  0.47

Onco had always said that if/when the PSA reached or progressed beyond the 0.20 mark I would be referred for a PSMA PET scan and true to her word I underwent an 18F PET PSMA scan at UCLH in June 2020 (when my PSA was somewhere between 0.22 and 0.27). The scan was completely clear which, of course, is very reassuring.

My Onco had been toying with the thought that the PSA might be coming from residual benign prostate cells left behind after my multi-modal primary treatments (RARP then salvage RT and HT [see my bio for full details]). Given the latest jump from 0.27 to 0.47 over 2 months I remain to be convinced. As you can see by the frequency of PSA testing, my Onco is keeping a very close eye on me which, whilst reassuring, is also somewhat anxiety-inducing.

Any thoughts on what this PSA pattern is likely to be pointing to in terms of localised recurrence versus micro mets etc? And what, if any, are the likely treatment options going forward? Though extremely effective, I had a very bad time whilst on HT (Bicalutamide/Zoladex) for 24 months as part of the RT/HT package so if, as I imagine, that's a likely treatment modality, I'd like to hold off for as long as possible. Where does Chemo fit into the equation (if indeed it does) in this scenario?

Thanks, in advance, for your input and advice.

Edited by member 20 Sep 2020 at 16:08  | Reason: Typos

User
Posted 20 Sep 2020 at 23:04
You have to love an onco with such a sunny disposition but I think if your PSA turned out to be due to benign prostate material you would be a case study at the next international onco-urology conference!

Even the most modern tracers can't always spot PCa cells - CJ's PSA was in the hundreds and he was still getting clear scans, I think - eventually, the micro-mets all showed themselves at more or less the same time in numerous places around his body. I wonder if it is worth trying another scan but with a different tracer - Gallium 68 or 18F Axumin?

If it is indeed a further recurrence, it is not barmy to delay starting HT again - some oncos like to wait until the PSA reaches 5 or even 10 before re-starting treatment. It is certainly worth asking about chemo first as research suggests that it makes the HT more effective for longer.

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

User
Posted 20 Sep 2020 at 23:06
PS - it may be worth joining YANANow to see if anyone knows whether a penile implant can affect PSA in a man with no prostate.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Sep 2020 at 23:55

Peesee 

My PSA is rising post RARP and SRT and is currently 0.47.  The current plan is to wait until the PSA hits 1.0 before having a scan. 

Thanks Chris

User
Posted 27 Sep 2020 at 14:44

Hi Chris. Thanks for your reply. I think that in part, at least, the threshold for informing the best time to carry out a scan is informed by the available technology. As I understand it, the more commonly used PET scans are unlikely to detect anything at PSA levels of less than 1.0 whereas the newer PET PSMA scans can sometimes find activity at levels of 0.20 and upwards. Fortunately, my hospital (UCLH), uses PET PSMA whereas many centres, as yet, don't.

Let's hope you never reach 1.0 so the scan can be avoided altogether!

User
Posted 27 Sep 2020 at 14:55

Thanks Lyn. In that case, here's hoping the conference is due to be held somewhere warm, sunny and COVID-free!! I'm packing my suitcase as I write.

I'll have a chat with the Prof about the merits of using a different tracer though I'm guessing (and hoping) that another scan of any kind won't be on the cards for some time yet. The two choline PET scans I had whilst I was under Guys and St Thomas' both showed a glow in one of my interiliac nodes - its relevance was discounted at the time as in the intervening period between scans (+/- 1 year) it hadn't changed in size, shape etc. The recent PSMA PET didn't pick this up at all?

Thanks for flagging up the potential relevance of the implant. That had sort of left my radar but I do recall one of the oncology spRs commenting that it can affect PSA levels. I'll flag it on YANAnow for sure and report back when I next update on here.

Edited by member 27 Sep 2020 at 14:56  | Reason: Typos

User
Posted 14 Oct 2020 at 17:45

Hi all

Further update. PSA is now 0.50 (up from 0.43 one month ago - and not 0.47 as originally posted). That's an increase of about +/-0.07 per month for the past few months. To be honest I had expected it to be higher so it came as a slight relief!

It was a deputising Registrar at my phone appointment (not the Prof) and he rang 1.5 hours ahead of time which threw me slightly so I wasn't quite as prepared with questions as I would have liked.

I asked if they had a view on whether the PSA was coming from the prostate bed or micromets. He told me that this was impossible to determine from blood tests alone. I asked about the merits of using an alternative tracer for any future scan and was told that 18F PET PSMA is the best tracer/scan currently available for detecting PCa at PSA levels like those I am retruning currently.

The plan going forward now is to run a further PSA test in 6 weeks from now (end November) with a telephone consult to follow. They will use this (and, if appropriate, subsequent PSA results) to guide the timing of further imaging. 

So for now, we watch and wait.

Best regards,

PeeSee

 

  

 
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