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To wait .... or not to wait ?

User
Posted 11 Mar 2021 at 21:14

Hi ALL

I appreciate that we’re all unique in as much as test results and their significance can vary from individual to individual. However, I’ve been struck by this particular forum and the willingness of it’s participants to give freely of their time and experience. Hopefully somebody out there can offer a view on my dilemma ?

I’m a 57 year old with close family history. My dad died as the consequence of advanced prostate cancer at the age of 55. That was 1983 when much less was known about the condition and the sad reality is that it took way too long for his doctors to diagnose him, by which time the damage was done. 
As a consequence, I’m well aware of the implications that has for me and when I began to experience some urinary symptoms about 3 years ago, I knew it was time to visit the doc. DRE carried out at that time and prostate felt normal but perhaps enlarged.  Lengthy discussion re PSA test and to keep it brief, doctor considered it unnecessary at that time, largely due to his DRE and my explanation of my symptoms. I was happy with that course of action. 
Went back to Dr ( different doc ) about 6 months later for  blood tests re another matter and asked if PSA could be included. Result came back as 3.4.... repeated 6 months later 3.9. On that basis, I was referred to a Consultant. DRE again was fine. MRI scan showed nothing beyond a ‘mildly enlarged’ prostate and I was discharged with a letter to my Dr to repeat PSA in 6 months and consider further referral if PSA level reached 5. ( not sure how he arrived at that number ) 

6 months later PSA = 2.8...... review 12 months  

As the consequence of Covid restrictions, 12 months turned into 18 Eventually re-tested last week Result = 4.5. 
Fairly lengthy conversation with another new Dr. His first suggestion was a re-test in 6 months. Which he later changed to 3 months. When I asked about possibly being re-referred to the Consultant (private) his response was along the lines of “ I could do that if you want”.... followed by a lengthy silence!  We finally agreed to carry out another test in 3 months. 
My dilemma is around the increase in PSA from 2.8 to 4.5. Certainly not huge in comparison to some of the scores I’ve read in these forums ..... and I know it falls below the level 5 previously set by the consultant however, from what I’ve seen and read about PSA velocity.... it’s above  the 0.75 annual increase threshold. 
I know my enlarged prostate could be a possible explanation however, I also think it would be overly complacent of me to simply dismiss it as that. 
I’m still torn between waiting three months ..... or heading back to the consultant and possibly/ probably another MRI (and /  or a biopsy ? )
I’m working hard to keep things in perspective but by the same token, I have a nervousness about not finding something at an early opportunity. 
Has anybody out there been faced with a similar dilemma......similar fluctuations? 
3.4 - 3.9 - 2.8 - 4.5. 
Strange as it may seem, its the ‘normal’ reading of 2.8 that has taken over my thinking. 
Penny for somebody’s thoughts ??

 

thanks all

SR

User
Posted 11 Mar 2021 at 23:43

Hi Stewart, 

It's a difficult one to call. I think I would ignore the 2.8 result it doesn't seem to fit in. If you plotted your results on a graph and drew the best fit straight line, you would say that your psa went from about 3.5 to about 4.5 over about 2.5 years. So it is not rising very rapidly.

It is a moderately high number but not excessive for your age. And if your prostate is large then it is acceptable for it to be a bit high. 

The family history is a bit worrying but I think another member of this forum has quoted that only about 5% of prostate cancers have a clear genetic link. So you are at higher risk but not massively higher risk.

So with all the above to consider, I think keeping a close eye on it is the best policy, which is the policy you seem to have come to yourself. 

A psa of 5 for further referral is fairly arbitrary but quite reasonable. Over treatment of PC is far too common, a figure of 5 should avoid unnecessary false alarms but will hopefully catch it before it becomes a problem.

So regular psa tests and try not to miss any, so you can really get to grips with how fast it is rising and how much it fluctuates are a good idea.

You don't want to get involved with biopsies until an MRI shows there is something worth investigating, and you don't want to be having MRIs every few months until the psa numbers suggest there is something to look for. 

Thankfully this cancer is a lot more treatable than it was 40 years ago, and will be detected in you (you will almost certainly get it because nearly all men do, they just die of something else before it gets troublesome) a lot earlier than it was in your father. 

Don't forget all the above is just my opinions I'm not a doctor. 

Dave

User
Posted 12 Mar 2021 at 00:19

It is me that usually comments on the over-focus on family history and yes, research indicates that only a very small % of prostate cancers are genetic ... rather more are thought to be environmental / lifestyle. However, your case is different in that it is unusual for a man to die with prostate cancer in his 50s and was even more unusual in the 1980s, and the genetic link seems to be stronger where a direct family member was diagnosed young (that would have been in his 50s in 1983 but in 2021 we are seeing men in their 30s with PCa). Is there any history in your direct family of uterine or ovarian cancer, male breast cancer and / or women diagnosed with breast cancer in their 30s? 

None of that really has a direct influence on your current situation. A PSA that rises and falls is not typical of PCa; it is more often associated with prostatitis. Was there any mention of possible infection when you had the previous MRI? You are almost at the 5.0 threshold anyway; I suspect you will have trouble getting an appointment with the urologist now as he has given a specific threshold at which he is prepared to see you again BUT I would be getting that next PSA test bang on 12 weeks and then pushing very strongly for a re-referral to urology. Once there, quiet persistence until you get a new MRI scan, I think, and multiparametric MRI (mpMRI) rather than the older flat scan.
Do you know whether your previous MRI was mpMRI?

Edited by member 12 Mar 2021 at 00:24  | Reason: Not specified

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

User
Posted 12 Mar 2021 at 02:12
In mine and others’ experience, GPs have very little knowledge of PCa (the Big C as some call it), so don’t put too much faith in them.

Your PSA results are concerning, with the familial connection being another factor, so as our Matron says, go for your next PSA test as scheduled, and frankly, even if the result is below 4, get yourself referred back to a urology consultant. Is it worth going private, as you’ll see the same guy and save £250. You could get a two week referral if PCa is suspected.

If they have any suspicions, then logically a multi-parametric MRI should follow in short order, and if further cause for concern, a transperineal biopsy, subsequently. (Avoid the rectal TRUS biopsy!)

Hopefully your PSA results are natural aberrations, but best to be sure!

Best of luck.

Cheers, John.

User
Posted 12 Mar 2021 at 08:07
DRE is basically useless as a diagnostic tool except to rule out advanced PC. Do not take reassurance from it.

I did and it allowed a T2A to get to a T3.

If you are concerned get an MRI, no risk lots of visibility!

User
Posted 12 Mar 2021 at 14:15

Originally Posted by: Online Community Member
Also ..... as I’ve mentioned, the outcome of the initial DRE was greatly reassuring. Would it be a practical or reasonable and proportionate step to ask for another as a potentially interim measure ?

 

I would say absolutely not although others here may have a different view. First, a DRE can't identify that all is well, it can only identify possible cancer that is already quite a significant size. Second, the DRE can affect PSA results. Third, it deflects away from the pressing matter - your PSA is 50% higher than the upper threshold of 'normal' for your age. 

My husband was 50, with a PSA of 3.1 and a small, soft prostate. The only reason we was referred to urology was that the young trainee GP had recently done some course on prostate cancer - it was a real 'I probably don't need to but I think I might refer you just in case' conversation. Even the urologist said DRE fine, PSA fine, soft small prostate,  MRI was clear and his subsequent diagnosis was T1a (tiny tumour, no problem) - when it was removed and inspected in a lab, he had cancer in every segment of his prostate and it had escaped to his bladder. 

 

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

User
Posted 12 Mar 2021 at 17:20

One reason I have little faith in General Practitioners in this regard is that I was on a consulting couch in my underpants with abdominal pain (probably due to humping Her Loveliness’s heavy suitcases round following a trip to Italy), when I said to him: “While you’re down there, can you do a DRE?”

To which he replied: “We don’t do that these days”, which was news to the urologist when my PSA had jumped from 2.2 to 16.4. The first thing he did was reach for the KY Jelly and rubber glove!

Unfortunately that GP has left the country, so it’s difficult for me to pursue a complaint against him.

Get your arse and prostate gland to the urology department, via your GP, as soon as.

Cheers, John.

Edited by member 13 Mar 2021 at 03:36  | Reason: Not specified

User
Posted 13 Mar 2021 at 00:52

Hi Stewart

Feel free to have a read of my profile.  Similar timeline and values .

In effect I was self administering .. AS . Although times were random and I 'chased' GP.

The key ..

 Nov 2014 - First and only Biopsy PSA risen from 5.4 (it was always around 4 or 5, 2009 was circa 3 or less).

PSA 7.4 Oct 2014 - time to make decisions

There was no mpMRI unlike by brother. 

As Lyn and others already posted, agree and not much more to add. My DRE were always ok. The decision is when to you go for biopsy.  

You do have the benefit of more PSA tests and a base line can be seen.  I didn't have that many tests, looking back as took quite a relaxed view.     I was quite surprised when after op I was told the membrane was being transgressed .  Again I had always assumed a tumour was unifocal not multifocal.. ie cell mutation throughout the prostate.  My brother in effect made his biopsy decision based on PIRAD 4 values. 

Incidentally he had PSA values up to 18, although had an infection and had had a TURP some years before. 

Regards Gordon

 

User
Posted 13 Mar 2021 at 21:21

Hi Stewart,

Very good question, paradoxically the roles were reversed in many ways. The GP I hardly saw much and I asked him directly once, what he would do. He answered I wouldn't have had a PSA test in the first place. Ok... He was professional however I never knew where he was coming from.  He was quite laid back, so to answer your question, I suggested this needs further investigation, we must have spoken on the phone, when results came back.  A letter arrived some weeks later for a biopsy. The only reason I went was my urine had a slight odour, which I considered might be sign of diabetes or infection, I had had prostatitis in my 30's for a few months.

I don't have diabetes, and there was no infection. I always knew they were c. 50% higher , however they always had been, so I was not unduly concerned.  I also always had to push, prompt for PSA tests.   In your situation I believe you are doing exactly right, keep having PSA tests.  3 mthly . Look at trends as you know.  

Regards Gordon

Edited by member 13 Mar 2021 at 21:38  | Reason: Not specified

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User
Posted 11 Mar 2021 at 23:43

Hi Stewart, 

It's a difficult one to call. I think I would ignore the 2.8 result it doesn't seem to fit in. If you plotted your results on a graph and drew the best fit straight line, you would say that your psa went from about 3.5 to about 4.5 over about 2.5 years. So it is not rising very rapidly.

It is a moderately high number but not excessive for your age. And if your prostate is large then it is acceptable for it to be a bit high. 

The family history is a bit worrying but I think another member of this forum has quoted that only about 5% of prostate cancers have a clear genetic link. So you are at higher risk but not massively higher risk.

So with all the above to consider, I think keeping a close eye on it is the best policy, which is the policy you seem to have come to yourself. 

A psa of 5 for further referral is fairly arbitrary but quite reasonable. Over treatment of PC is far too common, a figure of 5 should avoid unnecessary false alarms but will hopefully catch it before it becomes a problem.

So regular psa tests and try not to miss any, so you can really get to grips with how fast it is rising and how much it fluctuates are a good idea.

You don't want to get involved with biopsies until an MRI shows there is something worth investigating, and you don't want to be having MRIs every few months until the psa numbers suggest there is something to look for. 

Thankfully this cancer is a lot more treatable than it was 40 years ago, and will be detected in you (you will almost certainly get it because nearly all men do, they just die of something else before it gets troublesome) a lot earlier than it was in your father. 

Don't forget all the above is just my opinions I'm not a doctor. 

Dave

User
Posted 12 Mar 2021 at 00:19

It is me that usually comments on the over-focus on family history and yes, research indicates that only a very small % of prostate cancers are genetic ... rather more are thought to be environmental / lifestyle. However, your case is different in that it is unusual for a man to die with prostate cancer in his 50s and was even more unusual in the 1980s, and the genetic link seems to be stronger where a direct family member was diagnosed young (that would have been in his 50s in 1983 but in 2021 we are seeing men in their 30s with PCa). Is there any history in your direct family of uterine or ovarian cancer, male breast cancer and / or women diagnosed with breast cancer in their 30s? 

None of that really has a direct influence on your current situation. A PSA that rises and falls is not typical of PCa; it is more often associated with prostatitis. Was there any mention of possible infection when you had the previous MRI? You are almost at the 5.0 threshold anyway; I suspect you will have trouble getting an appointment with the urologist now as he has given a specific threshold at which he is prepared to see you again BUT I would be getting that next PSA test bang on 12 weeks and then pushing very strongly for a re-referral to urology. Once there, quiet persistence until you get a new MRI scan, I think, and multiparametric MRI (mpMRI) rather than the older flat scan.
Do you know whether your previous MRI was mpMRI?

Edited by member 12 Mar 2021 at 00:24  | Reason: Not specified

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

User
Posted 12 Mar 2021 at 02:12
In mine and others’ experience, GPs have very little knowledge of PCa (the Big C as some call it), so don’t put too much faith in them.

Your PSA results are concerning, with the familial connection being another factor, so as our Matron says, go for your next PSA test as scheduled, and frankly, even if the result is below 4, get yourself referred back to a urology consultant. Is it worth going private, as you’ll see the same guy and save £250. You could get a two week referral if PCa is suspected.

If they have any suspicions, then logically a multi-parametric MRI should follow in short order, and if further cause for concern, a transperineal biopsy, subsequently. (Avoid the rectal TRUS biopsy!)

Hopefully your PSA results are natural aberrations, but best to be sure!

Best of luck.

Cheers, John.

User
Posted 12 Mar 2021 at 07:11
Thanks to everybody for their responses.... greatly appreciated.

Dave64....... perversely, it’s the jump from the lowest reading ( 2.8 I’m perfectly comfortable with ) back up to 4.5 that I think has spooked me a little.

LynEre....my dad’s primary tumor was eventually identified as prostate but by then it was pretty widespread. He had previous long term history of sciatic pain and for a substantial period of time, that was the focus of his treatment. I’m not aware of any close relatives having any of the other cancers you mention. My mother had breast cancer but was well into her 70’s. No mention of prostatitis or infection following scan and sorry, I’ve no idea which version ofMRI it was.

The consultants appointment was private. In Scotland we don’t have the same urgent referral timescales so the likelihood of seeing an NHS consultant within 2-3 weeks I suspect would be limited.... especially in current climate.

Bollinge ..... I think you’re right ! It almost felt as if the most recent Dr I discussed this with, was looking for a steer from ME ! Conversely, the first Dr I visited best part of 3 years ago seemed very knowledgeable and as a consequence of his DRE and a lengthy conversation around my symptoms.... and specifically around a number of symptoms I didn’t have..... persuaded me not to pursue further testing at that time.

Maybe I should have added that my urinary symptoms remain largely unchanged since that initial visit.

Unfortunately , he’s no longer at my local practice.

Greatful to everybody for their thoughts

One further question if I may please. The NICE guidance suggests re-testing of borderline PSA within 6-12 weeks. I certainly won’t and wouldn’t be leaving it any longer than 12 but .... would closer to 6 be too early?? Also ..... as I’ve mentioned, the outcome of the initial DRE was greatly reassuring. Would it be a practical or reasonable and proportionate step to ask for another as a potentially interim measure ? i.e. if DRE is ok .... more content and reasonable to wait 12 weeks for PSA re-test..... or if DRE indicates change ( or is inconclusive) ask for immediate referral.

I’m not usually such a ‘worrier’ ..... but this is testing me !

Thanks again to all of you for your support. ( actually feels quite cathartic just sharing this )

User
Posted 12 Mar 2021 at 08:07
DRE is basically useless as a diagnostic tool except to rule out advanced PC. Do not take reassurance from it.

I did and it allowed a T2A to get to a T3.

If you are concerned get an MRI, no risk lots of visibility!

User
Posted 12 Mar 2021 at 08:27

Francij

Appreciate your thoughts.... thanks for sharing. 

User
Posted 12 Mar 2021 at 14:15

Originally Posted by: Online Community Member
Also ..... as I’ve mentioned, the outcome of the initial DRE was greatly reassuring. Would it be a practical or reasonable and proportionate step to ask for another as a potentially interim measure ?

 

I would say absolutely not although others here may have a different view. First, a DRE can't identify that all is well, it can only identify possible cancer that is already quite a significant size. Second, the DRE can affect PSA results. Third, it deflects away from the pressing matter - your PSA is 50% higher than the upper threshold of 'normal' for your age. 

My husband was 50, with a PSA of 3.1 and a small, soft prostate. The only reason we was referred to urology was that the young trainee GP had recently done some course on prostate cancer - it was a real 'I probably don't need to but I think I might refer you just in case' conversation. Even the urologist said DRE fine, PSA fine, soft small prostate,  MRI was clear and his subsequent diagnosis was T1a (tiny tumour, no problem) - when it was removed and inspected in a lab, he had cancer in every segment of his prostate and it had escaped to his bladder. 

 

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

User
Posted 12 Mar 2021 at 17:20

One reason I have little faith in General Practitioners in this regard is that I was on a consulting couch in my underpants with abdominal pain (probably due to humping Her Loveliness’s heavy suitcases round following a trip to Italy), when I said to him: “While you’re down there, can you do a DRE?”

To which he replied: “We don’t do that these days”, which was news to the urologist when my PSA had jumped from 2.2 to 16.4. The first thing he did was reach for the KY Jelly and rubber glove!

Unfortunately that GP has left the country, so it’s difficult for me to pursue a complaint against him.

Get your arse and prostate gland to the urology department, via your GP, as soon as.

Cheers, John.

Edited by member 13 Mar 2021 at 03:36  | Reason: Not specified

User
Posted 12 Mar 2021 at 17:42

Quick update:

Further conversation with different practice Dr as a consequence of which, I attended the surgery today. Urine check and DRE carried out. Urine check was clear of infection and DRE was similarly OK (accepting the identified limitations of DRE !)

More significantly perhaps, the Doc has undertaken to write to the Consultant for an explanation of his clinical rationale in advising that no further referral was necessary unless my PSA level hit 5.  I'm aware that I should perhaps have asked that question before I left the consultation however, to be honest, such was my relief at getting a relatively clean bill of health I was just pleased to get out of his office !. Perhaps if I can at least understand his clinical thinking, I hopefully won't overthink things as much as I have on this occasion.

Whilst today's appointment won't result in an immediate referral (unless consultant has a change of view), it at least gives me the comfort to content myself till my PSA re-test in early June. 

I'm trying hard not to get ahead of myself but suspect that I'll be looking for that referral come June. The three possible outcomes of my PSA re-test are 1- it stays the same......2- it goes up.......3-it comes down however, I'm struggling to think that it could lower by such an extent and to such a number that the Doc / any Doc could possibly say (with any certainty or confidence) that everything was OK. Arguably the biggest difference for me today was being able to speak to a more knowledgeable & reassuring Doc and the positive effect that has had on my mindset.

Bollinge ......Just read your update as I type. Rest assured my wife will carry her own case in future and I won't be visiting Italy any time soon !!!

Again to ALL of you.......my grateful thanks for taking the time to share your thoughts and experiences. Hugely appreciated.

Regards S

User
Posted 13 Mar 2021 at 00:52

Hi Stewart

Feel free to have a read of my profile.  Similar timeline and values .

In effect I was self administering .. AS . Although times were random and I 'chased' GP.

The key ..

 Nov 2014 - First and only Biopsy PSA risen from 5.4 (it was always around 4 or 5, 2009 was circa 3 or less).

PSA 7.4 Oct 2014 - time to make decisions

There was no mpMRI unlike by brother. 

As Lyn and others already posted, agree and not much more to add. My DRE were always ok. The decision is when to you go for biopsy.  

You do have the benefit of more PSA tests and a base line can be seen.  I didn't have that many tests, looking back as took quite a relaxed view.     I was quite surprised when after op I was told the membrane was being transgressed .  Again I had always assumed a tumour was unifocal not multifocal.. ie cell mutation throughout the prostate.  My brother in effect made his biopsy decision based on PIRAD 4 values. 

Incidentally he had PSA values up to 18, although had an infection and had had a TURP some years before. 

Regards Gordon

 

User
Posted 13 Mar 2021 at 08:07

Gordon

thanks for sharing that and I’m pleased to know that you’ve come out the other side of this. Onwards and upwards my friend. 
One quick question if I may please .... when your PSA was in the 4-5 range... what was it that satisfied your Drs that that was OK and no intervention required ? Was that ever explained?

many thanks

Stewart

User
Posted 13 Mar 2021 at 21:21

Hi Stewart,

Very good question, paradoxically the roles were reversed in many ways. The GP I hardly saw much and I asked him directly once, what he would do. He answered I wouldn't have had a PSA test in the first place. Ok... He was professional however I never knew where he was coming from.  He was quite laid back, so to answer your question, I suggested this needs further investigation, we must have spoken on the phone, when results came back.  A letter arrived some weeks later for a biopsy. The only reason I went was my urine had a slight odour, which I considered might be sign of diabetes or infection, I had had prostatitis in my 30's for a few months.

I don't have diabetes, and there was no infection. I always knew they were c. 50% higher , however they always had been, so I was not unduly concerned.  I also always had to push, prompt for PSA tests.   In your situation I believe you are doing exactly right, keep having PSA tests.  3 mthly . Look at trends as you know.  

Regards Gordon

Edited by member 13 Mar 2021 at 21:38  | Reason: Not specified

User
Posted 14 Mar 2021 at 07:37

Thanks for that Gordon. 
I saw a couple of references yesterday to the correlation between PSA levels and prostate volume. My previous MRI 2 years ago confirmed enlargement, although I’m not sure of the actual volume number. Hopefully the consultant will come back this week and confirm that as part of his clinical thinking. 
I read all of the pros and cons about PSA testing and recognised that, if for no reason other than family history, I was going to have to bite the bullet at some point and get on the rollercoaster..... or at least that’s what it feels like. 
When my last ‘normal’ test was done pre Covid..... it was a ‘that’s great see you next year’ moment. I think it’s the idea of the 3 monthly testing that’s spooking me ..... even though I understand why.  
In normal times I’d have loads to occupy me and my mind ..... these Covid restrictions really are a b*****d ! 
thanks again

Regards. Stewart

 
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