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psa level for referral to Oncology post Op

User
Posted 19 Aug 2024 at 20:12

Hello Pop-pickers,

Good news today as my psa is unchanged over the last 4 months at 0.11.  I would have been running wild and free for 4 months but the nurse said there'd been a change of procedure and I could now be referred to Oncology before it reaches 0.2.  My choice, but she thought I should and after some cautious curiosity I became enthusiastic.

The most I found out was each patient is reviewed to decide when they should be referred.  This meeting might result in waiting longer but I wondered if it could result in an early intervention with the raygun.  It seems to make sense to hit early if probability is good, and perhaps not use HT.  Any thoughts welcome.   Peter

psa results

Dec 21  psa 0.06 first time detectable.

February 2023 psa 0.1
May 2023 psa 0.09
August 2023  psa 0.09
December 23 psa 0.1
April 2024  0.11
August 2024 0.11

 

 

 

User
Posted 20 Aug 2024 at 00:51

It's a very slow doubling time, 3 years. At the current rate it will be 3 years before you breach 0.2 and if PET scans are more accurate when you get to 0.5 that is going to be six years away. 

I think it is reasonable to assume you only had a few cancer cells in your body post prostatectomy, and that implies that it had not already distant metastasised. So RT to the prostate bed will probably kill whatever cells are growing there now. If it has metastasised I think with such a slowly rising PSA it would be in only one place (multiple distant meets would have generated noticeable PSA after the prostatectomy), and having RT to the prostate would not prevent later RT to a different area of the body.

So zapping the prostate bed now would probably cure your cancer. If it didn't you would probably have to wait about six years to be able to spot it and assuming it is in one or two places have more RT with curative intent.

If I were an oncologist (which I'm not, I'm a computer nerd) looking at my budget, I would probably not want to spend money for RT on someone with a very non urgent cancer. If I were a patient in your position I would probably agree with the oncologist that, though you almost certainly still have cancer, at the current rate it is probably 50/50 whether it will kill you before some other cause. If you were to leave this (obviously closely monitored) for another three to six years, yes you will have more cancer cells, but scans will be better and treatments may also be better by then. Though RT side effects are minimal, you will also have avoided them for three to six years. So on balance I would just keep having PSA tests every 4 months.

Edited by member 20 Aug 2024 at 14:32  | Reason: Not specified

Dave

User
Posted 20 Aug 2024 at 07:52

Hi Peter, 

My current PSA is 0.19 and has more or less doubled over the last year (see my profile), so a little faster than yours. I was referred to oncology at 0.16 and am off for my first consultation this afternoon. I am quite anxious as to what path they will recommend. I'll let you know.

Peter

User
Posted 20 Aug 2024 at 08:21

I have been managed by oncology for years (don't trust GPs or Urologists once you don't have a prostate). I have also swapped from private to NHS since retiring. While I was private I had the luxury of seeing specialist prostate radiation oncologists for second opinions.

Waiting for a change in doubling time or 0.2 was the universal recommendation for my case by all the oncologists I have seen recently (even when money was not a consideration). The only difference in proposed treatment path was whether whole pelvis or prostate bed radiation would be recommended if I eventually needed it.

So don't dismiss lightly the impact of radiation to your nether regions especially if the trials say it's not going to make any difference giving it 5 years before you need it.

If you are high risk (G8+ and rapid doubling time) this post is not relevant to you.

Edited by member 20 Aug 2024 at 08:37  | Reason: Not specified

User
Posted 20 Aug 2024 at 14:19

Hi Peter, I had robotic surgery Oct 2022 then 3 monthly PSA tests. Initially 0.01 however in Dec 2023 it started to rise (0.04, 0.06, 0.08) At the 0.08 mark I was discussed at a MDT meeting which resulted in referral to oncology. After meeting with oncologist was advised to 33 sessions radiotherapy to the prostate bed as most likely area of recurrence. PSA just before starting radiotherapy 2 weeks ago 0.1. Everyone is different depending on histology results etc. You could ask for your case to be reviewed at a MDT meeting. MDT is Multi Disciplinary Team. Specialities meets to discuss the case. Good Luck 

User
Posted 20 Aug 2024 at 18:08

Saw the oncologist this afternoon. My case had been discussed amongst the team prior to my arrival. Because of my post op histology results (T3a, G3+4) together with the rate of increase of my PSA over the last year or so, they consider me high risk and recommend 33 sessions of RT to the prostate bed and lymph nodes, together with HT and to continue the HT for some time following completion of RT. I told them I am not keen on HT because of the side effects and whilst they acknowledge it is my decision, they strongly advise me to do it. Everything and all the risks were explained to me in detail and I wasn't rushed to make a decision on the spot. I was told a PSMA scan would be inconclusive at my stage and that it is best to zap the most likely areas. My gut feeling is to get on with it. Even if I go for a second opinion elsewhere, (they recommended UCLH) I know that I am bound for RT and that the length of time I take HT is in my hands anyway. Also, it doesn't suit me well to have to travel into central London for treatrment and reviews when all the West Herts facilities are within 25 minutes of my home. and to date, I have been super satisfied with their empathetic approach. There was a time when I thought that a PSA level of 1.9 would have been considered too low for SRT but clearly in my case and others on this thread with lower levels, it is not.

Peter

User
Posted 20 Aug 2024 at 19:32

Hi Chris, 

Thanks. Whatever decision I make, like everyone else here, I won't know if it's the right one for some time later, or perhaps never. It's a rock and a hard place decision. I have just read the pamphlets given to me at the hospital. They make scary points about short and long term side effects of RT and HT. But then I guess if we read the leaflets included with paracetamol, Neurofen and suchlike we would all let our headaches and minor pains take their natural course. Stay safe, Peter

User
Posted 19 Aug 2024 at 22:23

This is a dilemma because studies seem to show that it can be better to start salvage treatment while the PSA is still relatively low (e.g. below 0.5 or even below 0.25) but on the other hand, as the PSA grows there is more chance of identifying the precise location of the cancer on a PSMA PET scan and then targetting it more precisely, thereby reducing collateral damage.

Even Dr Scholz (an American expert on prostate cancer) seems undecided but you may find this video useful in highlighting some of the issues involved:

https://www.youtube.com/watch?v=X_FtOBTIOj0

 

Edited by member 19 Aug 2024 at 22:27  | Reason: Not specified

User
Posted 19 Aug 2024 at 22:26

Hi Peter, 

I had 20 fractions of SRT without HT a couple of years ago and it was pretty straightforward, just the daily grind of driving to the treatment centre and managing the fullness of my bladder which wasn't always easy. 

Looking at your PSA results though, you seem to be un a similar position to francij1, you're probably comparing notes already. It would be interesting to hear what oncology advise.

Good luck. 

Kev.

Edited by member 19 Aug 2024 at 22:27  | Reason: Typo

User
Posted 19 Aug 2024 at 23:29
I think if they refer before a PSA of 0.2, the key statistic is whether the PSA is consistently increasing at a significant rate. It looks as if yours has been more or less stable for 18 months.

My oncologist basically agreed with KS25, with a PSA under 0.5 I was told scans can show nothing and weren't worth doing since he had to make decisions on treatment regardless.

User
Posted 20 Aug 2024 at 07:18

Originally Posted by: Online Community Member
If I were an oncologist (which I'm not,

I wish you had have been an oncologist. You explain things so well. Brilliant post.👏

User
Posted 20 Aug 2024 at 18:33

Peter, have a look at the start of my profile,there are some similarities. I didn't have HT because it was thought to be toxic for a urethral stricture I was having treated. I was refused a PSMA at similar levels to yours and had the "educated guess" 33 sessions of salvage RT to the prostate bed. My PSA did reduce after SRT so something was in the bed , but the PSA did start to rise after SRT.

I am trying to avoid HT, but it may be looming. In hindsight the additional of HT may have been a benefit. I did have six months of Bicalutamide with my second course of SABR treatment to a cancerous lymph node. Not sure if that is an option for you, I have always thought that if the HT is too much to cope with I could stop it and face the outcome.

If the PSA rises after SRT there is now the option of a PSMA scan later and SABR treatment to a limited number tumors on the NHS.

Difficult decision,hope you make the right one.

Thanks Chris 

 

User
Posted 21 Aug 2024 at 09:36

To answer the question posed by Peter2016, the figures quoted by Dr Kwon for recurrence sites are:

33%  local only

45% metastatic only

22% both

On the back of these figures his view is that men should not get radiotherapy until they find out which kind of recurrence they have. That argument seems to assume that it is possible to find this out in good time to choose the right treatment. The later video by Dr Scholz seems to accept that this is not always possible, which means that it is not such a straightforward decision. He argues that people may take different views, and that the answer could be influenced by things like the risk factors that have been discussed in other posts, such as Gleason score and doubling time.

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User
Posted 19 Aug 2024 at 22:23

This is a dilemma because studies seem to show that it can be better to start salvage treatment while the PSA is still relatively low (e.g. below 0.5 or even below 0.25) but on the other hand, as the PSA grows there is more chance of identifying the precise location of the cancer on a PSMA PET scan and then targetting it more precisely, thereby reducing collateral damage.

Even Dr Scholz (an American expert on prostate cancer) seems undecided but you may find this video useful in highlighting some of the issues involved:

https://www.youtube.com/watch?v=X_FtOBTIOj0

 

Edited by member 19 Aug 2024 at 22:27  | Reason: Not specified

User
Posted 19 Aug 2024 at 22:26

Hi Peter, 

I had 20 fractions of SRT without HT a couple of years ago and it was pretty straightforward, just the daily grind of driving to the treatment centre and managing the fullness of my bladder which wasn't always easy. 

Looking at your PSA results though, you seem to be un a similar position to francij1, you're probably comparing notes already. It would be interesting to hear what oncology advise.

Good luck. 

Kev.

Edited by member 19 Aug 2024 at 22:27  | Reason: Typo

User
Posted 19 Aug 2024 at 23:29
I think if they refer before a PSA of 0.2, the key statistic is whether the PSA is consistently increasing at a significant rate. It looks as if yours has been more or less stable for 18 months.

My oncologist basically agreed with KS25, with a PSA under 0.5 I was told scans can show nothing and weren't worth doing since he had to make decisions on treatment regardless.

User
Posted 20 Aug 2024 at 00:51

It's a very slow doubling time, 3 years. At the current rate it will be 3 years before you breach 0.2 and if PET scans are more accurate when you get to 0.5 that is going to be six years away. 

I think it is reasonable to assume you only had a few cancer cells in your body post prostatectomy, and that implies that it had not already distant metastasised. So RT to the prostate bed will probably kill whatever cells are growing there now. If it has metastasised I think with such a slowly rising PSA it would be in only one place (multiple distant meets would have generated noticeable PSA after the prostatectomy), and having RT to the prostate would not prevent later RT to a different area of the body.

So zapping the prostate bed now would probably cure your cancer. If it didn't you would probably have to wait about six years to be able to spot it and assuming it is in one or two places have more RT with curative intent.

If I were an oncologist (which I'm not, I'm a computer nerd) looking at my budget, I would probably not want to spend money for RT on someone with a very non urgent cancer. If I were a patient in your position I would probably agree with the oncologist that, though you almost certainly still have cancer, at the current rate it is probably 50/50 whether it will kill you before some other cause. If you were to leave this (obviously closely monitored) for another three to six years, yes you will have more cancer cells, but scans will be better and treatments may also be better by then. Though RT side effects are minimal, you will also have avoided them for three to six years. So on balance I would just keep having PSA tests every 4 months.

Edited by member 20 Aug 2024 at 14:32  | Reason: Not specified

Dave

User
Posted 20 Aug 2024 at 07:18

Originally Posted by: Online Community Member
If I were an oncologist (which I'm not,

I wish you had have been an oncologist. You explain things so well. Brilliant post.👏

User
Posted 20 Aug 2024 at 07:52

Hi Peter, 

My current PSA is 0.19 and has more or less doubled over the last year (see my profile), so a little faster than yours. I was referred to oncology at 0.16 and am off for my first consultation this afternoon. I am quite anxious as to what path they will recommend. I'll let you know.

Peter

User
Posted 20 Aug 2024 at 08:21

I have been managed by oncology for years (don't trust GPs or Urologists once you don't have a prostate). I have also swapped from private to NHS since retiring. While I was private I had the luxury of seeing specialist prostate radiation oncologists for second opinions.

Waiting for a change in doubling time or 0.2 was the universal recommendation for my case by all the oncologists I have seen recently (even when money was not a consideration). The only difference in proposed treatment path was whether whole pelvis or prostate bed radiation would be recommended if I eventually needed it.

So don't dismiss lightly the impact of radiation to your nether regions especially if the trials say it's not going to make any difference giving it 5 years before you need it.

If you are high risk (G8+ and rapid doubling time) this post is not relevant to you.

Edited by member 20 Aug 2024 at 08:37  | Reason: Not specified

User
Posted 20 Aug 2024 at 14:19

Hi Peter, I had robotic surgery Oct 2022 then 3 monthly PSA tests. Initially 0.01 however in Dec 2023 it started to rise (0.04, 0.06, 0.08) At the 0.08 mark I was discussed at a MDT meeting which resulted in referral to oncology. After meeting with oncologist was advised to 33 sessions radiotherapy to the prostate bed as most likely area of recurrence. PSA just before starting radiotherapy 2 weeks ago 0.1. Everyone is different depending on histology results etc. You could ask for your case to be reviewed at a MDT meeting. MDT is Multi Disciplinary Team. Specialities meets to discuss the case. Good Luck 

User
Posted 20 Aug 2024 at 18:08

Saw the oncologist this afternoon. My case had been discussed amongst the team prior to my arrival. Because of my post op histology results (T3a, G3+4) together with the rate of increase of my PSA over the last year or so, they consider me high risk and recommend 33 sessions of RT to the prostate bed and lymph nodes, together with HT and to continue the HT for some time following completion of RT. I told them I am not keen on HT because of the side effects and whilst they acknowledge it is my decision, they strongly advise me to do it. Everything and all the risks were explained to me in detail and I wasn't rushed to make a decision on the spot. I was told a PSMA scan would be inconclusive at my stage and that it is best to zap the most likely areas. My gut feeling is to get on with it. Even if I go for a second opinion elsewhere, (they recommended UCLH) I know that I am bound for RT and that the length of time I take HT is in my hands anyway. Also, it doesn't suit me well to have to travel into central London for treatrment and reviews when all the West Herts facilities are within 25 minutes of my home. and to date, I have been super satisfied with their empathetic approach. There was a time when I thought that a PSA level of 1.9 would have been considered too low for SRT but clearly in my case and others on this thread with lower levels, it is not.

Peter

User
Posted 20 Aug 2024 at 18:25

Hi All,

Thanks for the excellent advice and comments.   There are good points made about waiting longer but if offered it won't be easy to say no.  It throws the gauntlet down to me for all that may happen.   But I think they'll say wait.

My Gleason is 4+4, it seemed surprising to have a slow climb.  Maybe it's a 3 cell structure.

I also wonder if it's some kind of trial but we'll see.

Thanks, Peter

 

 

p.s. Plexx09 your comment arrived just as I was to click go.  It's interesting they're offering treatment without a scan at a relatively low level.  Your psa is rising faster than mine,  as for HT, I did a nomogram for mine some time ago and HT made quite a decent difference.  I think I'd try and put up with it, although you can stop, as you said,  it it's too much. 

I wondered if you should make a separate thread for your case and edit the above to point to it,  but Chris has replied to you I think so perhaps not now.

Edited by member 20 Aug 2024 at 18:41  | Reason: Not specified

User
Posted 20 Aug 2024 at 18:33

Peter, have a look at the start of my profile,there are some similarities. I didn't have HT because it was thought to be toxic for a urethral stricture I was having treated. I was refused a PSMA at similar levels to yours and had the "educated guess" 33 sessions of salvage RT to the prostate bed. My PSA did reduce after SRT so something was in the bed , but the PSA did start to rise after SRT.

I am trying to avoid HT, but it may be looming. In hindsight the additional of HT may have been a benefit. I did have six months of Bicalutamide with my second course of SABR treatment to a cancerous lymph node. Not sure if that is an option for you, I have always thought that if the HT is too much to cope with I could stop it and face the outcome.

If the PSA rises after SRT there is now the option of a PSMA scan later and SABR treatment to a limited number tumors on the NHS.

Difficult decision,hope you make the right one.

Thanks Chris 

 

User
Posted 20 Aug 2024 at 19:32

Hi Chris, 

Thanks. Whatever decision I make, like everyone else here, I won't know if it's the right one for some time later, or perhaps never. It's a rock and a hard place decision. I have just read the pamphlets given to me at the hospital. They make scary points about short and long term side effects of RT and HT. But then I guess if we read the leaflets included with paracetamol, Neurofen and suchlike we would all let our headaches and minor pains take their natural course. Stay safe, Peter

User
Posted 20 Aug 2024 at 22:19
plexx, good luck. If someone is at 0.19 there is obviously no point in waiting until 0.2 before a decision, knowing it has been rising steadily. You obviously need to make some choices, the big one for me would be about HT which for many can be the worst thing about salvage RT. I previously found a paper which suggested HT might not make a big difference for someone in your situation (PSA 8 months) and you might want to discuss that with your oncologists. (Reference: https://pubmed.ncbi.nlm.nih.gov/34071587/ ).

Peter, I think francij makes an excellent point, if there isn't an immediate risk you don't want all the side effects of salvage RT earlier than you need them. Particularly since apparently it is known (according to my urologist) for PSA to rise a bit after surgery but then stabilise.

User
Posted 20 Aug 2024 at 23:00

Both Plex and Jason have quick doubling times and that is always indicative of an active tumour. Jason is also very young which adds to his risk of delaying treatment.

Peter and I have very slow doubling times and occasional reductions, that is less indicative of a risky tumour.

As explained to me when I had a second opinion from the Royal Marsden. The Radicals trial (which had a treatment threshold for early salvage radio therapy of 3 consecutive rises OR greater than 0.1) showed no benefit to early intervention before 0.2 which turned out to be the average value men were treated at despite the criteria. The Royal Marsden consultant said this meant that in my case delaying Salvage therapy until 0.2 or a change in doubling time was a safe option. She also said if my doubling time was less than 12 months there would be no point waiting as it was inevitable. Interestingly the private Onco who had recommended salvage therapy at 0.08 also changed his recommendation to watch and wait after the Radicals trial reported their results.

 

So to sum up my thought process if it's obvious you are heading past 0.2 in the next 12 months there is no point waiting (even though Radicals showed no benefit to treatment outcomes prior to 0.2).  If it's not certain you will live long enough to go beyond 0.2 why risk the not insignificant risks of RT?

 

Edited by member 20 Aug 2024 at 23:05  | Reason: Not specified

User
Posted 20 Aug 2024 at 23:13

I may be way off target with this thinking. As I said earlier I am not a fan of HT. I am a fan of Dr Kwon, in one of his lectures he comes up with the following. 'Only 33 percent of men have recurrence confined to the prostate bed'. Does it make sense to have HT to  control the cancer that "may "be outside the prostate bed,while we blindly target the cancer that "may not" be in the prostate bed.

https://youtu.be/Q2joD360_pI?si=XDMrPb0iRoI4Dbvx

The relevant bit starts about two and a half minutes in. 

Thanks Chris 

User
Posted 20 Aug 2024 at 23:26
Probably not but Kwon is also a fan of chucking the kitchen sink at any recurrence and claims to have cured men with a radical treatment approach (HT, chemo and RT)
User
Posted 21 Aug 2024 at 07:41

Guys, thanks for all your posts. Much appreciated. Certainly, at a current PSA of 0.19 and fast approaching 0.2, I hope to live long enough for SRT to be worthwhile. But I will look both ways before crossing the road! For me, SRT is a given and it seems that HT is also a given - but for how long? I understand it's helpfulness before and during treatment, but for how long afterwards? Perhaps that could depend on side effects? I am tempted to go for a second opinion but with what I have already been told by the onco team at West Herts and with all the info and experience here from you gentlemen and others, would it just be a tick in the box exercise?

Peter

Edited by member 21 Aug 2024 at 07:48  | Reason: Not specified

User
Posted 21 Aug 2024 at 08:09

Should the question be how many people have cells in the bed and outside. As well as those with cells in the bed only. 

Those with both sets of cells may need localised treatments on the bed and outside.

HT is used to further weaken cells being treated.  Some doctors refer to triple treatment RT, HT and chemo as first base.

I haven't watched the video as I find that doctor makes me anxious.

User
Posted 21 Aug 2024 at 08:19

Originally Posted by: Online Community Member
 For me, SRT is a given and it seems that HT is also a given - but for how long? I understand it's helpfulness before and during treatment, but for how long afterwards?

Hi Peter

A link to research into HT and salvage RT.

https://pubmed.ncbi.nlm.nih.gov/30799187/

I'm not medically or scientifically trained but in this research they categorised 3 risk factors. Cancer stage equal or greater than T3b. Gleason equal or greater than 8. PSA at salvage RT less than 0.5.

Using these, they tested the usefulness of HT.

From your profile it appears that you had none of the risk factors and they concluded where there were no risk factors HT had little benefit.

Edited by member 21 Aug 2024 at 08:37  | Reason: Additional text

User
Posted 21 Aug 2024 at 08:38

Thanks Adrian. According to that study, HT would have no significant benefit for me as I do not reach any of the three risk factors. Perhaps that may nudge me away from long term HT as I'm not sure I am brave enough to completely disregard the onco's recommendation which, I am sure, is belt and braces.

Sorry Adrian. I replied before I had read your complete message. Just went straight for the link! 

Edited by member 21 Aug 2024 at 08:41  | Reason: To add last paragraph

User
Posted 21 Aug 2024 at 09:04

Originally Posted by: Online Community Member
Sorry Adrian. I replied before I had read your complete message. Just went straight for the link!

Its my fault Pete. I edited my initial post and added my interpretation of the results later. At least we both read their conclusions the same. 🙂

 

User
Posted 21 Aug 2024 at 09:36

To answer the question posed by Peter2016, the figures quoted by Dr Kwon for recurrence sites are:

33%  local only

45% metastatic only

22% both

On the back of these figures his view is that men should not get radiotherapy until they find out which kind of recurrence they have. That argument seems to assume that it is possible to find this out in good time to choose the right treatment. The later video by Dr Scholz seems to accept that this is not always possible, which means that it is not such a straightforward decision. He argues that people may take different views, and that the answer could be influenced by things like the risk factors that have been discussed in other posts, such as Gleason score and doubling time.

 
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