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PSA doubled; biochemical recurrence?

User
Posted 27 Sep 2022 at 15:38

After external beam radiotherapy my PSA level fell to 1.7 for fourteen months. It has now increased to 4.1 in four months. Has anyone experienced a jump of this magnitude post RT? I've read about the "bounce" but this appears to be a more aggressive jump.

My consultant wants me to get another PSA reading in November. I'm now wondering if it is worth paying out of pocket for a PSMA PET Scan. My wife is worried about the lack of urgency when this might be a case of biochemical recurrence. Any advice?

Thank you in advance for any input.

User
Posted 27 Sep 2022 at 22:46

There isn't a 'might be' here - you are in biochemical recurrence. There isn't any great urgency from the medical point of view though as the standard approach will be to put you on lifelong HT to control the cancer and oncologists have different views about when to start the HT in these cases ... some will put you on HT when you get to 5, others would wait till your PSA reaches 10 or 20.

If your oncologist is suggesting that you have another PSA test in November and then a scan, that isn't a major problem - if your PSA rises a little more, there is more chance of the scan picking up the problem. If, on the other hand, your onco is just suggesting another PSA test in November and isn't offering a scan at that point then yes, push for a scan. If your hospital has PSMA scanning, great. It doesn't have to be a PSMA scan though - if your hospital has FACBC , I would go for that instead. If it comes back clear, you could consider paying for a PSMA scan as a follow up.

The debate is what difference a scan might make to your treatment options. If the scan picks up an obvious and isolated met away from the pelvic area, targeted RT might be possible. If the scan picks up activity in the pelvic area, your only option is HT, possibly with early chemo. If, as often happens, the scan doesn't pick anything up, you are looking at HT or gambling on waiting for the PSA to go higher and then repeating the scans. CJ's PSA went to 100 and still all his scans were coming back clear - when it did eventually show itself, he had multiple mets.

Edited by member 27 Sep 2022 at 22:47  | Reason: Not specified

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

User
Posted 28 Sep 2022 at 06:58
Local recurrence can sometimes be treated with a focal treatment or salvage prostatectomy too. Not mainstream but OldBarry did the focal route, and salvage RP is more mainstream these days.
User
Posted 29 Sep 2022 at 01:35

From the little information we have on your diagnosis and subsequent, histology, it looks to me like your Consultant has adopted a very relaxed attitude in your case. I would have expected that he might have tried to rule out any reason other than cancer that might have accounted for such an increase in your PSA such as a UTI, by getting a culture urine test done followed as soon as practicable by another PSA test. If there was no reason established to account for your PSA level and it still remained of the same sort of order, I would have thought that an MRI or PSMA could be beneficial. If this resulted in cancer being found within the Prostate it might be possible to treat it with Focal Therapy or depending on where elsewhere it was found possibly with more RT or SRT depending on where and how extensive were any tumours seen.

Where tumour(s) is /are seen, I am inclined to the view of Consultants who want to treat as soon as possible. As they say, it's easier to treat an early small tumour than wait until this has grown larger and possibly spawned other tumours gaining additional heterogeneity in the process. So in some cases, early salvage treatment can prevent or delay the need for systemic treatment. In my case, after my first HIFU and with PSA gradually increasing again I was written up for HT again but declined it.

I paid for a 68 Gallium PSMA test privately - it was even more difficult in 2015 to get this scan on the NHS than than it is now. This showed that I had a small tumour in my previously radiated Prostate but not in an iliac lymph node as was previously supposed. After another MRI and a persistence by me to avoid HT, it was agreed to give me a second HIFU, which I had last December. Since then, I have had two PSA tests, both of these being 0.02. Interestingly, this is lower than my nadir of 0.05 after RT. So for me, the PSMA scan helped change my treatment from starting HT. It's still possible that at some time if the cancer gives concern I may yet have to accept HT but meanwhile the HIFU has at least deferred my taking it. (As long as you still have a Prostate, even a radiated one, there is always the potential for cancer to grow).

A PSMA scan, or if this is not available one of the other top scans, will not necessarily show all cancer or change treatment plans but it did for me as it has done for a substantial number of other men, so it is something worth considering. Of course every case should be treated individually and on its merits but some Consultants treat more aggressively or differently to others. In my case I was fortunate in being able to get the views from other hospitals who have been involved in my case.

Edited by member 29 Sep 2022 at 12:27  | Reason: Clarification

Barry
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User
Posted 27 Sep 2022 at 22:46

There isn't a 'might be' here - you are in biochemical recurrence. There isn't any great urgency from the medical point of view though as the standard approach will be to put you on lifelong HT to control the cancer and oncologists have different views about when to start the HT in these cases ... some will put you on HT when you get to 5, others would wait till your PSA reaches 10 or 20.

If your oncologist is suggesting that you have another PSA test in November and then a scan, that isn't a major problem - if your PSA rises a little more, there is more chance of the scan picking up the problem. If, on the other hand, your onco is just suggesting another PSA test in November and isn't offering a scan at that point then yes, push for a scan. If your hospital has PSMA scanning, great. It doesn't have to be a PSMA scan though - if your hospital has FACBC , I would go for that instead. If it comes back clear, you could consider paying for a PSMA scan as a follow up.

The debate is what difference a scan might make to your treatment options. If the scan picks up an obvious and isolated met away from the pelvic area, targeted RT might be possible. If the scan picks up activity in the pelvic area, your only option is HT, possibly with early chemo. If, as often happens, the scan doesn't pick anything up, you are looking at HT or gambling on waiting for the PSA to go higher and then repeating the scans. CJ's PSA went to 100 and still all his scans were coming back clear - when it did eventually show itself, he had multiple mets.

Edited by member 27 Sep 2022 at 22:47  | Reason: Not specified

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

User
Posted 28 Sep 2022 at 06:58
Local recurrence can sometimes be treated with a focal treatment or salvage prostatectomy too. Not mainstream but OldBarry did the focal route, and salvage RP is more mainstream these days.
User
Posted 29 Sep 2022 at 01:35

From the little information we have on your diagnosis and subsequent, histology, it looks to me like your Consultant has adopted a very relaxed attitude in your case. I would have expected that he might have tried to rule out any reason other than cancer that might have accounted for such an increase in your PSA such as a UTI, by getting a culture urine test done followed as soon as practicable by another PSA test. If there was no reason established to account for your PSA level and it still remained of the same sort of order, I would have thought that an MRI or PSMA could be beneficial. If this resulted in cancer being found within the Prostate it might be possible to treat it with Focal Therapy or depending on where elsewhere it was found possibly with more RT or SRT depending on where and how extensive were any tumours seen.

Where tumour(s) is /are seen, I am inclined to the view of Consultants who want to treat as soon as possible. As they say, it's easier to treat an early small tumour than wait until this has grown larger and possibly spawned other tumours gaining additional heterogeneity in the process. So in some cases, early salvage treatment can prevent or delay the need for systemic treatment. In my case, after my first HIFU and with PSA gradually increasing again I was written up for HT again but declined it.

I paid for a 68 Gallium PSMA test privately - it was even more difficult in 2015 to get this scan on the NHS than than it is now. This showed that I had a small tumour in my previously radiated Prostate but not in an iliac lymph node as was previously supposed. After another MRI and a persistence by me to avoid HT, it was agreed to give me a second HIFU, which I had last December. Since then, I have had two PSA tests, both of these being 0.02. Interestingly, this is lower than my nadir of 0.05 after RT. So for me, the PSMA scan helped change my treatment from starting HT. It's still possible that at some time if the cancer gives concern I may yet have to accept HT but meanwhile the HIFU has at least deferred my taking it. (As long as you still have a Prostate, even a radiated one, there is always the potential for cancer to grow).

A PSMA scan, or if this is not available one of the other top scans, will not necessarily show all cancer or change treatment plans but it did for me as it has done for a substantial number of other men, so it is something worth considering. Of course every case should be treated individually and on its merits but some Consultants treat more aggressively or differently to others. In my case I was fortunate in being able to get the views from other hospitals who have been involved in my case.

Edited by member 29 Sep 2022 at 12:27  | Reason: Clarification

Barry
User
Posted 29 Sep 2022 at 10:06

OldBarry, I can't thank you enough for your input and the time you took to impart all that valuable information. It will certainly give me better insight when talking to my consultant.

User
Posted 16 Dec 2022 at 23:58

Hi,

I'd be interested to hear how you have got on.  I had RT in 2017 followed by 3 years of HT.  Over the last 2 years my PSA gradually crept up from 0.02.

6 months ago it was 1.8 last week 5.6. I have just been referred to Urology and have an appointment next week.  I have absolutely no idea what to expect.

User
Posted 17 Dec 2022 at 03:02

I can't offer much help. All I can say is once it got above 2.1 it is classed as biochemical recurrence. I would have said referral to oncology rather than urology was more appropriate, but it is quite possible these departments overlap. 

A few years ago it would have been a case of life long HT, but now a PSMA PET scan might be used to see where the cancer is. If in the prostate it can probably not be irradiated further, if one or two spots are found away from the original treatment site, SABRE (targeted RT) might be used.

I was told if I had recurrence they would not start HT until PSA reached 10. You might want to think how much longer you want to remain of HT rather than be railroaded on to it. ChrisJ waited till his PSA was about 1000, not necessarily what the doctor wanted, but he is still here enjoying life.

 

Dave

User
Posted 17 Dec 2022 at 10:09

Thanks Dave,

Every little bit of information helps me to understand what may be in store for me.  I guess I'll need to wait until I see the Urologist to see where we are going with it.  It's odd I know but I have a strange relationship with HT.  I have had mental health problems all of my life and they disappeared for the 3 years that I was on HT and came back when it ended.  I actually asked my psychologist if it could be prescribed for me.  Despite the usual side effects, even my wife thought it would be a good idea but unfortunately it is not a listed drug for mental health.  At least I have that consolation that if I end up back on HT it may help me in other ways.

Thanks again John

User
Posted 17 Dec 2022 at 12:02

I found the HT interesting. Not having a libido, does give you a bit more spare time. It gives you a chance to see the world through different eyes. On balance I prefer not being on HT, and would delay it.

I hope they find some way to deal with your recurrence. If SABRE doesn't work, HT will work for a few years probably about three or four, but possibly 15 or more. They can then add in chemo, or stronger HT. There are other treatments becoming available, none seem to cure, but they do set the disease back a year or so.

Dave

User
Posted 19 Dec 2022 at 02:47
The changes ascribed to HT in your case are interesting as the only side effects mentally related I have seen mentioned have included mood swings, aggression and stand off attitude and then only in a small number of men. Those affected in this way and or suffering general adverse side effects generally can't wait to end HT.
Barry
User
Posted 19 Dec 2022 at 04:57

Originally Posted by: Online Community Member
I found the HT interesting. Not having a libido, does give you a bit more spare time. It gives you a chance to see the world through different eyes. On balance I prefer not being on HT, and would delay it.

I'll agree with that view. There was a period early on in my HT experience where it was quite amazing to see the world from a genderless perspective, albeit with the stored experience of having looked at the world as a male for 75 years. The role of sexuality in our lives is both underplayed and in some senses denied, perhaps as part of a social contract of behaviour. The wonder of being an outsider wore off pretty quickly though.

On the other hand, it seems as though a whole aspect of your personality and interactions with others are so intertwined that excising libido is like slicing out a segment of your personality. Time brings some sort of adjustment but I look forward to the return of testosterone, if I'm lucky enough for that to happen as 75.

Interesting observations on mental health and HT mascot. I'm not going to ask what form your mental health issues took but given the variety of different mental health issues that abound out there, HT could possibly help, hinder or not have any bearing for different people.

Jules

User
Posted 19 Dec 2022 at 08:42

I believe the success or otherwise, of RT & HT combined, very much depends on how early, the Cancer is Diagnosed.
I believe PSA testing for men, should be promoted - not as it is currently done, a strong patient request.
It should be along the lines of female Breast checks - age related & family history. - in my case, my father died from PC at 71.
At the time my Cancer was diagnosed by PSA, I had just had a severer tummy upset - which was probably heatstroke in reality - but the doctor included it in a blanket test, after I told him what my Dad had died from - I doubt if it would have been included otherwise - PSA was 27 BTW at that time - following RT &HT several years ago, my recent PSA test, was 0.37 - I hope it stays low.
The Doctors 'finger' was useless, BTW. The Tumours were on the non-Rectum side, so Dr felt nothing wrong.

Edited by member 19 Dec 2022 at 09:03  | Reason: Not specified

User
Posted 19 Dec 2022 at 09:34

Barry.  I know, I researched the issue myself.  I don't know what happened but the transition was marked.  My lifelong problems with depression and anxiety literally vanished overnight.  My wife says I became much more emotional.  I

Then when the HT stopped it all gradually came back again.  It had made such a difference that requested to go back on again despite the fact that the other side effects were going and I had got erectile function back.  For us, it was worth having those side effects again for my mental wellbeing.

My wife has suggested that perhaps my testosterone levels were part of my problems.  I don't know, I only know it seemed to work for me.

User
Posted 19 Dec 2022 at 20:47

Mascot, your experience is intriguing. Assuming you are seeing a health professional over your mental health problems do let them know - there may be some interesting insights into mental conditions somewhere in the story.

I am currently in the recovery phase from HT following salvage RT. While I don't feel I am anywhere near back to normal, my wife does say I am recovering my previous level of assertiveness (which I hope was not too great, she didn't comment on its disappearance). Plus a change in body odour mentioned on another thread.

There may be some clues to a research psychiatrist about the causes of anxiety and depression.

 
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