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How do you decide when treatment is needed

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User
Posted 18 Jan 2022 at 18:10

Hi,

I am a new member of this community. This will sound like a naive question, however i would be interested in members sharing their own thoughts on the topic. I have been on AS now since 2016. PSA ranged initially between 2.8 and 3.8. Latterly over the last 12 months its starting to rise i.e. between 4 and 6. I have rationliased to myself that as you age your PSA  rises. Also Consultant does not seem overly worried and is happy for me to stay on AS.

I am reflecting. I guess the question is when is there a call to action to seriously consider localised treatment. I am ok psychologically to stay on AS. However I guess like all of us worried about catching it too late before it spreads. Hence is there a guide apart from PSA acceleration over time i.e. a value range which says. Hey you need to consider treatment?  At the mo i have had 2 MRIs. Would only consider another if the issue demands it.

Appreciate thoughts?

User
Posted 18 Jan 2022 at 18:57

"Posted 18 Jan 2022 at 17:03
Hi I am a new member to this site. Looking at where to go next in terms of potential treatments. Looking at the posts is seems that there is no clear winner in terms of treatment for localised PC. Is that correct? Also i gather there is a lot of work looking at targetted gene and drug therapies. Some unsing Nano bots. Does any one know of any developments in these areas?"

There are a few focal treatments - usually more suited to men who would otherwise be on AS than to those who need radical treatment. Choice is certainly wider for men who can pay. HIFU is the longest established focal treatment; data shows it is more successful as a salvage treatment than as a primary one but it can be repeated if necessary and is certainly worth you asking about. There is also cryotherapy and, if you can travel overseas, focal laser ablation. Nanoknife is on very limited availablity in England - one NHS hospital and two private practices I think. The issue with all focal treatments is that they have high recurrence rates so don't consider if you would be very distressed if it failed!

If you decide that AS has run its course and you want treatment, ask about brachytherapy which has better outcomes than focal treatments but with fewer side effects than surgery or external beam radiotherapy

Edited by member 18 Jan 2022 at 19:02  | Reason: Not specified

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

User
Posted 18 Jan 2022 at 19:13
Okay, there are a few reasons why PSA may jump around - the reassurance is that your PSA falls as well as rising which wouldn't really happen with prostate cancer. Episodes of inflammation, prostatitis, urinary tract infections, etc would be the most common cause of a PSA that goes up and down. But in your shoes, I would be asking the urologist whether it is time to have a DRE; I think the NICE guidance is that men on AS should have one every year.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2022 at 22:23

Go with your instincts I think. If you feel it might be time to ask for an MRI or a biopsy you could be right.

I've had the experience of a DRE that indicated no problems and an MRI that was inconclusive only months before a biopsy indicated Gleason 9. By that stage my psa was 11 but its had been rising for maybe 6 years before that, though more quickly in the last year before treatment. In retrospect it might have been better to have had treatment a year or two earlier even though my psa at that time was around 7.

Jules

User
Posted 19 Jan 2022 at 06:36
Broadly speaking, there seem to be two schools of thought on this. One is that you continue the AS until there is evidence that the cancer is progressing (I'm assuming that you are Gleason 3+3).

I was on AS from 2014, but an MRI scan in June 2021 showed an area of concern and a biopsy in November moved me from Gleason 3+3 to 3+4 at which point my consultant advised action and I am due to have surgery (RALP) in March. It seemed to be the case with my consultant that once grade 4 was involved he advised action.

The other school is that the cancer is never going to get any better, so you should have it treated while you are relatively young and without giving it the chance to progress to the next stage. If you leave it until you are older then recovery will be slower and beyond a certain age (75?) you may not be considered a suitable case for some treatments.

What course of action you take depends on your particular circumstances, so it's good that you are seeing your consultant in a few weeks and are looking to be informed and ask relevant questions.

User
Posted 19 Jan 2022 at 08:45

I thin the comment already made are excellent

 

Being on AS is a common practice in the Scandinavian countries and the results are not dissimilar to RP in terms of outcomes.

In terms of regular PSR tests I would ask your doctor to put you on antibiotics two weeks before as inflammation of the prostate will affect the readings. If you have a annual MRI this should highlight any areas of concern

In terms of treatment I would undertake your own research as the bulk standard treatment methods of RP and radiation can come with significant side effects. There are a number of focal therapies which offer an alternative and can be repeated unlike RP or radiation treatments.

User
Posted 19 Jan 2022 at 13:56

Your story is very similar to mine. I was on AS since 2005 when Ins co medical discovered largish prostate and PSA of 2.6 aged 41. MRI in 2013 was clear. Annual PSA readings rose gradually to 3.87 by 2018 (having fluctuated a bit within the range 3.2 to 3.8 most of the time). In 2019 and 2020 PSA jumped up to over 4 when I had 2 MP MRI’s that showed nothing really alarming PIRADS 2 and 3. Then rose to 6.37 by Apr 21 when I started to get v concerned. Despite poor flow and hesitation my urologist was not too concerned at all thinking it was probably inflammation or BPH. I insisted on Template biopsy and glad I did as diagnosed  with multifocal T2BN0M0. I had it taken out in June with RARP by leading high volume surgeon and PSA Now undetectable at <0.03. Post op histology revealed negative margins with grading unchanged but over 30% of the gland was cancerous.

Obviously Im glad I took action and feel I got it just in time although only time will tell if Im really clear or not.

User
Posted 19 Jan 2022 at 16:30

Well the last 2 MRI’s in 2019 and 2020 picked up PIRADS 2 and 3 which was annoying because it was inconclusive!! All my many DRE’s over the years were absolutely fine . I think my biggest lesion was 8mm so perhaps that was too small to see? I dont know really why it didnt show but I had the leading guy in london double check my MRI so it clearly was not obvious. But when the histology confirmed multi focal and 30% cancerous both I and the urologist were v surprised and relieved we had bothered with the biopsy. 

You have to make your own decision. Doctors are only human after all. A  biospy is not nice and you will have bloody sperm for at least a month after it but its the rolls royce of diagnosis I believe. The nurse at the RMH told me that the template biopsy that I had had was not the latest technology (I cant remember what she actually called the latest version) so perhaps find out what the latest is and have that. Definitely dont have a TRUS biopsy

 

Good luck with whatever you decide.

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User
Posted 18 Jan 2022 at 18:44
It should be okay to stay on AS if PSA is stable, mpMRI suggests that the cancer is nowhere near the outer edge or urethra and subsequent MRIs are not showing any significant changes. The problem comes when AS is not managed correctly- do you have an annual DRE, for example, and has an MRI been done since your PSA went above 4? The other time when a man is wise to start considering treatment is if he is very anxious on AS.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2022 at 18:57

"Posted 18 Jan 2022 at 17:03
Hi I am a new member to this site. Looking at where to go next in terms of potential treatments. Looking at the posts is seems that there is no clear winner in terms of treatment for localised PC. Is that correct? Also i gather there is a lot of work looking at targetted gene and drug therapies. Some unsing Nano bots. Does any one know of any developments in these areas?"

There are a few focal treatments - usually more suited to men who would otherwise be on AS than to those who need radical treatment. Choice is certainly wider for men who can pay. HIFU is the longest established focal treatment; data shows it is more successful as a salvage treatment than as a primary one but it can be repeated if necessary and is certainly worth you asking about. There is also cryotherapy and, if you can travel overseas, focal laser ablation. Nanoknife is on very limited availablity in England - one NHS hospital and two private practices I think. The issue with all focal treatments is that they have high recurrence rates so don't consider if you would be very distressed if it failed!

If you decide that AS has run its course and you want treatment, ask about brachytherapy which has better outcomes than focal treatments but with fewer side effects than surgery or external beam radiotherapy

Edited by member 18 Jan 2022 at 19:02  | Reason: Not specified

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

User
Posted 18 Jan 2022 at 19:07

Hi, thanks for your reply. It has been a long time since the Consultant performed a DRE. I think that is because historically the average over a year (s) has not accelerated to a level which causes him concern. It has only just started to move over 4 over the last 12-18 mths. Tends to go from 6.5, 3.8, 4.2. 3.9, 5.6 as an example. His view has been that there are lots of reasons that could result in this and not to be concerned until it goes consistently over 9.  I have an appt with him in a few weeks, so will see what he has to say. Have had a MR1 12 mths ago and it was not showing any development vs. previous. Hence his lack of concern. However does not explain why the numbers seem to be erratic. Maybe worth considering a biopsy as last one was on 2016.

I have tended to not think deliberately about the PC. However with it moving above 4 it obviously has made me think more about not being complacent.

Edited by member 18 Jan 2022 at 19:09  | Reason: Not specified

User
Posted 18 Jan 2022 at 19:13
Okay, there are a few reasons why PSA may jump around - the reassurance is that your PSA falls as well as rising which wouldn't really happen with prostate cancer. Episodes of inflammation, prostatitis, urinary tract infections, etc would be the most common cause of a PSA that goes up and down. But in your shoes, I would be asking the urologist whether it is time to have a DRE; I think the NICE guidance is that men on AS should have one every year.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2022 at 19:26

Thanks. Have you seen any research that correlates increasing Prostate size with a rise in PSA?

 

User
Posted 18 Jan 2022 at 22:23

Go with your instincts I think. If you feel it might be time to ask for an MRI or a biopsy you could be right.

I've had the experience of a DRE that indicated no problems and an MRI that was inconclusive only months before a biopsy indicated Gleason 9. By that stage my psa was 11 but its had been rising for maybe 6 years before that, though more quickly in the last year before treatment. In retrospect it might have been better to have had treatment a year or two earlier even though my psa at that time was around 7.

Jules

User
Posted 18 Jan 2022 at 22:37

Originally Posted by: Online Community Member

Thanks. Have you seen any research that correlates increasing Prostate size with a rise in PSA?

 

Yes - it is a fact that PSA rises as the prostate gets bigger. That's why acceptable PSA threshold for a man in his 30s is much lower than for a man in his 60s. 

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

User
Posted 18 Jan 2022 at 23:30

hi,

I found a study that gave an approx increase in psa for prostate size.  I wrote on here about it but can't find it.  It's too near bedtime now so maybe tomorrow or you could perhaps Google it.   regards Peter

User
Posted 19 Jan 2022 at 05:38

Originally Posted by: Online Community Member

Hi, thanks for your reply. It has been a long time since the Consultant performed a DRE. I think that is because historically the average over a year (s) has not accelerated to a level which causes him concern. It has only just started to move over 4 over the last 12-18 mths. Tends to go from 6.5, 3.8, 4.2. 3.9, 5.6 as an example. His view has been that there are lots of reasons that could result in this and not to be concerned until it goes consistently over 9.  I have an appt with him in a few weeks, so will see what he has to say. Have had a MR1 12 mths ago and it was not showing any development vs. previous. Hence his lack of concern. However does not explain why the numbers seem to be erratic. Maybe worth considering a biopsy as last one was on 2016.

I have tended to not think deliberately about the PC. However with it moving above 4 it obviously has made me think more about not being complacent.

For the few pence cost of a latex glove and a blob of KY Jelly, I would insist on a DRE at your next consultation.

My mate has been on AS for five years, and is doing very well on it. Although, he does insist on quarterly PSA tests, annual MP-MRI scans and a consultation with his urologist (all paid for privately).

Best of luck.

Cheers, John.

Edited by member 19 Jan 2022 at 14:07  | Reason: Not specified

User
Posted 19 Jan 2022 at 06:36
Broadly speaking, there seem to be two schools of thought on this. One is that you continue the AS until there is evidence that the cancer is progressing (I'm assuming that you are Gleason 3+3).

I was on AS from 2014, but an MRI scan in June 2021 showed an area of concern and a biopsy in November moved me from Gleason 3+3 to 3+4 at which point my consultant advised action and I am due to have surgery (RALP) in March. It seemed to be the case with my consultant that once grade 4 was involved he advised action.

The other school is that the cancer is never going to get any better, so you should have it treated while you are relatively young and without giving it the chance to progress to the next stage. If you leave it until you are older then recovery will be slower and beyond a certain age (75?) you may not be considered a suitable case for some treatments.

What course of action you take depends on your particular circumstances, so it's good that you are seeing your consultant in a few weeks and are looking to be informed and ask relevant questions.

User
Posted 19 Jan 2022 at 08:45

I thin the comment already made are excellent

 

Being on AS is a common practice in the Scandinavian countries and the results are not dissimilar to RP in terms of outcomes.

In terms of regular PSR tests I would ask your doctor to put you on antibiotics two weeks before as inflammation of the prostate will affect the readings. If you have a annual MRI this should highlight any areas of concern

In terms of treatment I would undertake your own research as the bulk standard treatment methods of RP and radiation can come with significant side effects. There are a number of focal therapies which offer an alternative and can be repeated unlike RP or radiation treatments.

User
Posted 19 Jan 2022 at 11:32

Originally Posted by: Online Community Member

Being on AS is a common practice in the Scandinavian countries and the results are not dissimilar to RP in terms of outcomes.

Isn't this like comparing apples with pears, Paul?

AS is not a curative treatment. It is merely keeping tabs on the disease in case of progression and is common practice everywhere. I was on AS for 5 years before RP. Had I stayed too much longer on AS, RP in itself may no longer have been a curative option. 

 

 

User
Posted 19 Jan 2022 at 12:53
Paul is correct, it's just the way it was worded I think.

A large-scale piece of EU research showed that if you take a man with low risk prostate cancer (T1 / T2a, G3+3 / 3+4) it makes no difference whether he has AS, RP or RT ... he has exactly the same chance of still being here in 10 and 15 years' time. Statistically, the man on AS does best because he doesn't live with the side effects of radical treatment. EUU conclusion was that we grossly overtreat men with low risk PCa.

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

User
Posted 19 Jan 2022 at 13:04

DRE does seem to be a crude way of determining whether the disease has progressed. I will be intriqued to see what the Consultant has to say. He is a Prof and was a strong proponent of HIFU

Edited by member 19 Jan 2022 at 13:09  | Reason: Not specified

User
Posted 19 Jan 2022 at 13:08

Currently Gleason 3+3. There is a strong argument to treat when younger as recovery would more likely to be successful. No surprise the biggest issue is the potential downsides i.e. ED and Incontinence. Also the much smaller but not insignificant issue of fistulas. 

Interesting point that the MRI might miss advancement and only a biopsy would give a more accurate result. I had not considered that.

User
Posted 19 Jan 2022 at 13:22

Originally Posted by: Online Community Member
Paul is correct, it's just the way it was worded I think.

 

Lyn, thanks for explanation. Yes, it was my understanding of the wording. 

Peter

User
Posted 19 Jan 2022 at 13:56

Your story is very similar to mine. I was on AS since 2005 when Ins co medical discovered largish prostate and PSA of 2.6 aged 41. MRI in 2013 was clear. Annual PSA readings rose gradually to 3.87 by 2018 (having fluctuated a bit within the range 3.2 to 3.8 most of the time). In 2019 and 2020 PSA jumped up to over 4 when I had 2 MP MRI’s that showed nothing really alarming PIRADS 2 and 3. Then rose to 6.37 by Apr 21 when I started to get v concerned. Despite poor flow and hesitation my urologist was not too concerned at all thinking it was probably inflammation or BPH. I insisted on Template biopsy and glad I did as diagnosed  with multifocal T2BN0M0. I had it taken out in June with RARP by leading high volume surgeon and PSA Now undetectable at <0.03. Post op histology revealed negative margins with grading unchanged but over 30% of the gland was cancerous.

Obviously Im glad I took action and feel I got it just in time although only time will tell if Im really clear or not.

User
Posted 19 Jan 2022 at 16:08

Thanks Jeremy. Alarming that the MRI did not pick you the advancement. Did the Urologist explain why?

User
Posted 19 Jan 2022 at 16:30

Well the last 2 MRI’s in 2019 and 2020 picked up PIRADS 2 and 3 which was annoying because it was inconclusive!! All my many DRE’s over the years were absolutely fine . I think my biggest lesion was 8mm so perhaps that was too small to see? I dont know really why it didnt show but I had the leading guy in london double check my MRI so it clearly was not obvious. But when the histology confirmed multi focal and 30% cancerous both I and the urologist were v surprised and relieved we had bothered with the biopsy. 

You have to make your own decision. Doctors are only human after all. A  biospy is not nice and you will have bloody sperm for at least a month after it but its the rolls royce of diagnosis I believe. The nurse at the RMH told me that the template biopsy that I had had was not the latest technology (I cant remember what she actually called the latest version) so perhaps find out what the latest is and have that. Definitely dont have a TRUS biopsy

 

Good luck with whatever you decide.

User
Posted 19 Jan 2022 at 18:37
Pedantic of me perhaps but please be precise - avoid the old fashioned TRUS ... the newer image guided TRUS is a completely different thing. Nationally, many cancer centres are dropping template biopsy in preference for IG TRUS, partly due to covid and pressure on operating theatres, I guess.

NICE guidance is that men on AS should have mpMRI if there are concerns because PSA is rising, although Martin probably wouldn't meet that criterion because his current PSA is still below his highest previous reading. It also says men should have a template biopsy before starting AS and subsequent biopsies should be image guided TRUS.

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

User
Posted 19 Jan 2022 at 19:34

Interesting to read that Lyn. 

My biopsy last August was transperineal under local anaesthetic. They said they no longer did TRUS at all. Does that comply with NICE? 

User
Posted 19 Jan 2022 at 19:36
I don't think so but never look a gift horse in the mouth!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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