I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Should I ask for a scan?

User
Posted 02 Sep 2018 at 10:26

Hi,

New here, 63 years old with no family history of prostate cancer and zero symptoms but a slowly rising psa levels. Had my first psa test four years ago, which I didn’t ask for but it was done by mistake during a well man clinic assessment.  The initial 4.8 got me reffered to a urologist who said the prostate felt soft and smooth so watch and wait was recommend.   Since then the results have been 4.8, 5.3, 4.2, 5.1, 6.4 with the last two reading being one year apart. My doctor wants to see me again for another DRE, but I’m wondering if I should now insist for an mpmri scan as I’m getting a little concerned - I would be prepared to pay if the nhs won’t cover it.   When I say zero symptom, I mean I sleep through 8 hours without needing to get up at all and have a flow like a race horse :-)

Any advice much appreciate. 

 

 

 

 

User
Posted 02 Sep 2018 at 19:41

I was in similar circumstances to you similar age, no obvious symptoms My brother had PC and I requested a PSA test for peace of mind. The start figure was 6.4, told not to worry etc. Tested every six months for the next four years and it crept up each time Even at a reading of 9.8 I was told not to be concerned, 'slow rate of increase' keep monitoring.

The next test was 10.4 and the GP's responses were going along the same lines and I asked for further tests. Urology Consultant, following by biopsy, All samples were positive for cancer and prostate removed within 6 weeks. (in June this year)  As far as I know it hasn't escaped elsewhere but in retrospect I feel that it was left far too long, I was too complacent to go along with what the Doc said without doing my own research and finally, that I will be lucky if it was caught just in time.

I would say insist in further checks to give you some certainty and hopefully the chance (if cancer is found) to have some of the lesser treatments before it gets to the high impact stuff.

 

User
Posted 16 Oct 2018 at 09:16

Colind - All the very best, hope all goes well.

Edited by member 16 Oct 2018 at 09:17  | Reason: Not specified

Show Most Thanked Posts
User
Posted 02 Sep 2018 at 14:39

Hi Neil.

Your rising PSA is obviously a concern to you, as was mine.

I requested a template biopsy after a trus biopsy was initially offered. MPMRI was carried out prior to the biopsy, which assisted in targeting suspicious areas of the prostate.

There are a number of reasons for a raised PSA, not just prostate cancer. However, a template biopsy will give you a definitive answer.

All the best,

Neil.

 

User
Posted 02 Sep 2018 at 15:30

Hi Neil,

The intervals between your PSA tests appear to have been long and I would have thought a further DRE and PSA test with in 3 months of the last one could be helpful. There are a number of reasons why PSA can be slightly higher than when previously tested, an infection, sex or certain strenuous activities some 24 hours before blood is taken and also as a man ages his secretion of PSA increases slightly and his Prostate may become excessively enlarged.  I think it most unlikely you will be offered a template biopsy as yet based on what you have told us but your GP may refer you to a urologist. Should this be the case I think you will have another PSA and DRE and maybe be offered an MRI scan.

Edited by member 02 Sep 2018 at 15:39  | Reason: Not specified

Barry
User
Posted 02 Sep 2018 at 18:51
Hi Neil,

The first step in your journey - hopefully towards a happy destination - should be to request / insist on a referral to urology and then a multi-parametric MRI scan at 3T resolution. Double check on the resolution!

There does seem to be a tendency towards indolence / ignorance regarding prostate cancer with many GPs, so the fact that you have had a raised PSA over a prolonged period should have rung alarm bells ages ago.

Loads of us here have been symptom-free, yet have cancer. I hope you are not one of us, but please get it checked out.

Best of luck.

Cheers, John.

User
Posted 02 Sep 2018 at 19:39

Hi there,

my husband had a PSA of 3.56 at his company medical and no symptoms when he was 53.

the BUPA doctor and the GP agreed he needed to see a urologist.

He saw the urolologist via BUPA who advised an MpMRI scan. The one he had was a 1.5 Tesla magnet ( we knew nothing at this time and were just doing what were told). This can did pick up an anomoly on the prostate which was targeted during a template biopsy and led to the cancer diagnosis.

so a referral to a urologist seems a good plan. Prostate cancer UK has done a freedom of information act on the location / use  of the MpMRI scanners in the UK. This can help you decide which clinic to attend should you have a choice under the new choices system.

good luck

 

Clare

User
Posted 02 Sep 2018 at 19:41

I was in similar circumstances to you similar age, no obvious symptoms My brother had PC and I requested a PSA test for peace of mind. The start figure was 6.4, told not to worry etc. Tested every six months for the next four years and it crept up each time Even at a reading of 9.8 I was told not to be concerned, 'slow rate of increase' keep monitoring.

The next test was 10.4 and the GP's responses were going along the same lines and I asked for further tests. Urology Consultant, following by biopsy, All samples were positive for cancer and prostate removed within 6 weeks. (in June this year)  As far as I know it hasn't escaped elsewhere but in retrospect I feel that it was left far too long, I was too complacent to go along with what the Doc said without doing my own research and finally, that I will be lucky if it was caught just in time.

I would say insist in further checks to give you some certainty and hopefully the chance (if cancer is found) to have some of the lesser treatments before it gets to the high impact stuff.

 

User
Posted 02 Sep 2018 at 21:16
ndav123, Old Barry, Bollinge, Claret, stukno

Thank you all for taking the time to reply, it’s very much appreciated. I would like to insist on a multi parametric MRI scan at 3T resolution but if the urologist refuses, because our local hospital doesn’t do it, what can I do? Could I still get one privately if I pay?

User
Posted 02 Sep 2018 at 21:49

It's not usually about the urologist - it is down to a) whether your hospital has the equipment b) whether mpMRI is delivered to an adequate standard and c) whether your CCG is willing to pay for it. If the CCG is a problem, going private helps but only if the local NHS hospital has the equipment as private hospitals don't have mpMRI. If your local hospital doesn't have it, or it isn't to the PROMIS standard, you can ask to be referred elsewhere.

Click on the link to view an interactive map of mpMRI facilities / standards:

https://prostatecanceruk.org/about-us/what-we-think-and-do/mpmri

 

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

User
Posted 02 Sep 2018 at 22:43

LynEyre - Many thanks for the help and link. Looks like my local hospital does do mpMRI but not to PROMIS standards, is this a big issue? If it is, what do you think are the chances of being referred to my nearest PROMIS standard hospital which is 35 miles away?

User
Posted 03 Sep 2018 at 11:56
Just back from seeing my GP. After the DRE he said prostate feels small and smooth but still referring me to the urologist as the rising psa is a concern. I asked if I could opt for an mpMRI before a biopsy but he suggested an MRI would be unlikly to reveal anything on a small smooth prostate so should go straight for a biopsy - I’m not sure about this, is this right or am I getting fobbed off?
User
Posted 03 Sep 2018 at 13:11
You are being fobbed off - the size of the prostate doesn't affect the ability of a scan to show cancer. Very small clusters of prostate cancer cells could be missed in any type of scan but then a biopsy could miss those as well.

But see what urology say before you prepare for a fight - your GP could just be a little bit behind the times.

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

User
Posted 03 Sep 2018 at 14:48

Hi Neil,

At least you got your referral to urology at last. If your GP is as ignorant as he seems to be of your potential cancer risk, you will probably not be on the “two weeks” to consultant route. Do you know if you are?

If you are not, and as you mentioned before about paying for an MRI, if there is a mammoth waiting list, it might be worthwhile investing £200 odd quid to see the best urological consultant in your area privately. He will know where the 3T Hi-Res scanners are and should be able to refer you for an mpMRI on the NHS. Do not accept a biopsy before one. And then avoid a TRUS biopsy if at all possible.

Although in my case the NHS has been brilliant - only post-diagnosis - it was not without quite a bit of pro-activity on my part.

Cheers, John

Edited by member 04 Sep 2018 at 01:47  | Reason: Not specified

User
Posted 03 Sep 2018 at 19:47
LynEyre - I suspect you’re probably right about the GP just being bit behind current thinking on mpMRI, I’ll reserve judgment until I hear what the urologist has to say.

Bollinge - Thanks for the tips. To be honest, I didn’t even think to ask how long the waiting list might be but least I’m now in the loop. I’ll definitely enquire about a 3T scan whenever I get to see the specialist, I suppose I could give it a few weeks then chase the GP for a likely date.

User
Posted 03 Sep 2018 at 20:25
No!!! Don't give it a few weeks ... a fortnight max :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Sep 2018 at 00:11
Hi Neil.

I have a small prostate with normal DRE... according to exam May 2018. Four weeks later - different doc - my prostate felt firm on one side. Who was right? Subsequent Mpmri did show 'insignificant' shadow areas. Template biopsy was positive. Go with your own feelings and don't be fobbed off.

In 2015 my psa was 6.1 and mri normal. I will be having this mri looked at again, once my surgery is out of the way.

All the best

Neil

User
Posted 04 Sep 2018 at 07:42
LynEyre - Ok I’ll chase it up if I haven’t heard anything after a couple of weeks - I guess I’m just not used to being pushy with the NHS.

ndav123 - Thanks again for the info. I think I’d feel most reassured having a scan with a higher res 3T mpMRI machine, but as my local hospital only has a standard mpMRI scanner I suspect I might just be offered that. If I only get offered a TRUS biopsy I won’t be happy, seems too much like a stab in the dark to me. I’ll just have to play it by ear and see what’s said.

User
Posted 04 Sep 2018 at 10:12

Originally Posted by: Online Community Member
I think I’d feel most reassured having a scan with a higher res 3T mpMRI machine, but as my local hospital only has a standard mpMRI scanner I suspect I might just be offered that. If I only get offered a TRUS biopsy I won’t be happy, seems too much like a stab in the dark to me. I’ll just have to play it by ear and see what’s said.

Do you know your local scanner is only 1.5 Tesla resolution?

Two friends told me not to have a TRUS biopsy, as they both had to have a template biopsy afterwards. Although in fairness, if there is a large amount of cancer, a 1.5T scan and the TRUS biopsy would most likely pick it up anyway.

Cheers, John

User
Posted 04 Sep 2018 at 17:06
Bollinge - To be honest, the only detail I can find on my local hospital is that it has two mri scanners. The map that LynEyre kindly provided the link for simply states that mpMRI is provided but not to PROMIS standard - not quite sure what that means though.
User
Posted 04 Sep 2018 at 18:47
You hsve been misled by rhetoric - Promis standard has nothing to do with 1.5T or 3T. In fact, the Promis project was done with 1.5T machines.

Promis standard is about offering mpMRI before biopsy rather than after. Some of the hospitals that have mpMRI but not to standard may only offer it after biopsy or in non-standard cases such as high PSA with low volume kiw grade cancer detected at biopsy.

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

User
Posted 04 Sep 2018 at 18:55

"Two friends told me not to have a TRUS biopsy, as they both had to have a template biopsy afterwards. Although in fairness, if there is a large amount of cancer, a 1.5T scan and the TRUS biopsy would most likely pick it up anyway."

It isn't just if there is a large amount of cancer. If the mpMRI identifies areas of concern at PIRAD 3-5 then a TRUS biopsy can be used to sample the suspect areas. Template biopsy is more important in cases where the scan is indeterminate (or cannot be done for medical reasons perhaps) and TRUS would thus be a shot in the dark.

As long as a scan is not allowed to rule out biopsy, and a TRUS biopsy is never relied upon without a scan, men will be diagnosed correctly. 3T / 1.5T is a bit of a red herring and TRUS v template is an unwinable argument as each case is different.

Edited by member 04 Sep 2018 at 18:57  | Reason: Not specified

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

User
Posted 04 Sep 2018 at 19:36

Originally Posted by: Online Community Member
You hsve been misled by rhetoric - Promis standard has nothing to do with 1.5T or 3T. In fact, the Promis project was done with 1.5T machines.

Promis standard is about offering mpMRI before biopsy rather than after. Some of the hospitals that have mpMRI but not to standard may only offer it after biopsy or in non-standard cases such as high PSA with low volume kiw grade cancer detected at biopsy.

Thank you again for the very useful information, I think I get it now.  So my hospital has the scanners but, as they don't work to the PROMIS standard, they will probably want to biopsy me first - this is not good news.  If it does pan out this way, could I refuse the biopsy, go back to my GP and ask to get referred to hospital that does offer a scan?

User
Posted 04 Sep 2018 at 20:34
No point anticipating problems that might not happen. The PCUK freedom of information request was some time ago - things may have changed in your area since then. Yes you could ask to go out of area but need to consider the full implications of that - if you ask for referral to an out of area hospital, will you have problems transferring back to the local one if you need treatment or are you committing yourself to travelling long distances for treatment in the future? If you demand a treatment or test out of area, does that delay your diagnosis or mean that your local CCG don't have to start treatment within the target time? Lots of things to ask the urology team once you have that urology appointment or have received a letter telling you what's next.

All the stressing about what might or might not be offered and what you have a right to as best pathway can be blown out of the water as there are always exceptions. My OH was referred with an almost normal PSA of 3.1, he got a urology appointment through the post and turned up to discover that it was a TRUS biopsy. He had it and then went to work - no warning, no information, no problems, no worrying about it. He was diagnosed with a T1 G7(3+4) and THEN they did the scans. Good job it wasn't the other way round as the scan was completely clear - if he had had that first, he may not have been diagnosed. When they operated, it was in every bit of his prostate and into his bladder - not all prostate cancers show on scans.

Why not give the urology department a ring and ask them what the normal pathway is there? Or contact your local PC support group - they will probably know.

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

User
Posted 04 Sep 2018 at 21:18
LynEyre - Thanks for info again, I guess I’ll just see what the urologist suggests. That’s a very scary story about your OH, it must have been one hell of a shock.
User
Posted 04 Sep 2018 at 22:54

But do remember Lynns OH was scanned in 2009 and things have moved forward a long way with the introduction of MpMRI scans being a game changer. The trial of the 1.5T machines was very positive of course and now with a 3T magnet things have improved again. PCUK are continuing to fund research and promote better practice and hopefully progress will continue. 

Good luck

Clare

User
Posted 04 Sep 2018 at 23:30
This is true but it is also possibly an odd version of PCa since his dad died with a PSA of 1.2 - and even the most modern tracers don't necessarily solve the problem as CJ has a post-op PSA of 30-odd and even a PSMA couldn't spot any cancer in his body.

Scans are a useful tool, as are biopsies but neither are foolproof. It is a combination of available diagnostics that gives the most reliable results.

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

User
Posted 04 Sep 2018 at 23:33
Hi Neil, no it wasn't such a shock since we were already dealing with my dad and his dad. The shock was being the youngest in the clinic by about 20 years but even that has changed recently.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Sep 2018 at 23:47

Interesting that your psa was lower on the 3rd test.  Your next will be your 6th, could that be lower?   It's a slow rise which isn't a bad thing.   The up and down could be a sign it's inflammation, but I'm not at all qualified to say that.

You ask if you should ask for an MRI and then got involved in a debate about the quality of the equipment.  Also whether to have a TRUS or a template biopsy.  Less than 2yrs ago I had a TRUS then an MRI.   They were very quick with the MRI, 3 days, and then about 5 days to the result.  Whereas the biopsy took a week and the result 2 weeks.   So perhaps if you have an MRI you could know something in just over a week, whereas the biopsy could be nearly 3 weeks.

Alternatively there is a lot said about over treatment and many doctors want to find genuine signs.  Some say that PCa is often a slow disease where you can wait.  Your psa isn't that high and it isn't rising that fast so you could have time to make decisions that take a bit longer.  On the other hand that's a personal decision about risk.   The low risk decision could be to have the TRUS and if it finds nothing then have a template biopsy and/or an MRI.   You might have just an enlarged prostate.  I hung onto that idea for a few weeks with a psa of 9 as I seem to recall the stats said I'd a 40% chance of it being benign which seemed quite decent odds.

So you could go with the flow or ask for an MRI as long as the dates aren't too long.  Theoretically they have 30 days to diagnose you from the day the GP referred you.

These notes start off short but grow, I hope it makes sense.

 

 

User
Posted 05 Sep 2018 at 01:05
Claret - Thank you for taking the time to respond. Your comment about things moving forward resonate with me as during my 26 years in environmental research I saw much innovation and progress. With my background I was always going to download the PROMIS study and looked at the findings, to me the benefit of an initial mpMRI seems irrefutable but whether my local hospital sees it that way remains to be seen.

LynEre - Good grief Lyn, three men in your life going through a similar thing, I now see where your knowledge and insights are coming from, I hope all is still going well.

Peter sans Prostate - Thank you for responding. Very observant of you to spot the strange drop in the psa readings, it was that drop that took the heat off the whole thing. Strangely enough, after my first reading of 4.8 I was referred to the urologist who after a flow test and DRE asked me why I was even there! That shook me initially as I’d been referred by my GP, but it made me feel like I was wasting their time. Although my levels are rising slowly, it is in the back of my mind now that something might be amiss, so another referral to see the urologist is probably the right thing. I’m just hoping I get the appropriate tests in the right order and I can get it sorted one way or another - we’ll see.

User
Posted 05 Sep 2018 at 01:55
I have a pal whose PSA fluctuates around 6. It's been like that for several years now and he has been diagnosed with PIN which is a sort of precancerous assessment. It may or may not chance to become considered cancer in due course. I did read the chances were about 50 50 so PIN remains another possibility for somewhat raised PSA. My friend has had no treatment whatsoever.

A leading urologist is on record as saying that no urologist would prefer a biopsy prior to MRI and that at UCLH they had done MRI first for the last 6 or 7 years and that way round was increasingly being adopted.

Barry
User
Posted 05 Sep 2018 at 03:23
Yes, we here are a bit obsessive about the minutiae of diagnosis and treatment, and the resolution of scans and number of cores sampled in biopsies, etc.

But you did ask!

Chill out, and wait for things to take their course. There are much, much, worse cancers, and hopefully you haven’t even got one!

Cheers, John

User
Posted 15 Oct 2018 at 19:35
Well I finally received my appointment to see the urologist, 4th Jan 2019!! That’s a whopping 17 weeks since my GP visit and dre exam. Is this the norm for the NHS these days? Got to say, I’m a little bit concerned having a rising psa and having to wait all this time. Has anyone managed to wangle an earlier date than their official one, or do I just suck it up and wait?
User
Posted 15 Oct 2018 at 20:03

It can depend on whether you're referred as urgent. If urgent cancer it should be 14 days.  I read that Stephen Fry and Bill Turnbull created a rush for tests.  You could ask if your GP referred it as urgent and ask him why not.  Going down the private route might end up expensive.

User
Posted 15 Oct 2018 at 20:26
It seems that either a) you have been referred on the non-urgent route rather than via the cancer pathway or b) because you are already under the urologist’s care the normal timescales do not apply or c) you are being delayed because you have asked for a non-standard route (for example if your GP has told them that you want the mpMRI rather than the normal diagnostic route).

You could phone the urology department or the urologist’s secretary to clarify why it isn’t until January.

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

User
Posted 15 Oct 2018 at 21:32
Peter sense Prostate, LynEyre - Thank you both for the advice. Thinking back, I’m guessing the GP doesn’t see me as urgent as I didn’t really push him very hard for a referral, I just didn’t realise waiting times were so bad.
User
Posted 16 Oct 2018 at 08:06

I was diagnosed with prostate cancer earlyt his August ,I'm going in tomorrow to have my prostate removed, will let you know how it goes and how it is after the operation.

User
Posted 16 Oct 2018 at 09:16

Colind - All the very best, hope all goes well.

Edited by member 16 Oct 2018 at 09:17  | Reason: Not specified

User
Posted 16 Oct 2018 at 11:21

Sounds like your GP is useless. I would be inclined to see a consultant privately, it could be 250 quid well spent.

Also you can get 3t imagining privately eg:
http://www.medicalimaging.org.uk/locations

 

User
Posted 16 Oct 2018 at 12:48

Originally Posted by: Online Community Member

Sounds like your GP is useless. I would be inclined to see a consultant privately, it could be 250 quid well spent.

Also you can get 3t imagining privately eg:
http://www.medicalimaging.org.uk/locations

 

not necessarily - it seems the GP is following the advice of the urologist. For all we know, the uro may have given the GP a threshold for re-referral (10  being the magic number oft quoted here) and once you are under the care of urology, the cancer pathway targets from GP to specialist are irrelevant. I think Neil needs to clarify with his GP or the urology department whether this is a new referral or a re-referral. 

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

User
Posted 17 Oct 2018 at 00:06
francij1 - Thanks for the link for medicalimaging but can’t see any prices, any idea how much a private mpMRI scan would cost?

LynEyre - My GP did show me the notes he received from the urologist, after my original visit and it just said they would be prepared to see me again if my psa remained high. I’m guessing they just don’t see it as urgent.

User
Posted 17 Oct 2018 at 05:06

Originally Posted by: Online Community Member
francij1 - Thanks for the link for medicalimaging but can’t see any prices, any idea how much a private mpMRI scan would cost?
 

Someone here in the last week said he paid £1500 for a 3T scan, and a friend paid the same for one a couple of years ago. Don’t know what resolution his was.

User
Posted 17 Oct 2018 at 09:35
The one I had 3 years ago cost approx 1500. That may not have been 3T as I wasn't savvy back then!

If you can afford it I would start with a private consult, the big benefit with seeing them privately is the time you get to ask questions. It gave me the chance to ask what the best path for diagnosis was in his opinion (rather than cheapest or what is available on NHS) he stated MRI with some enhancement followed by targeted biopsy if anomalies detected (I had no symptoms or lumpy bits). I think the whole diagnosis cost about 3k as I had the biopsy privately too.

User
Posted 17 Oct 2018 at 20:01
Bollinge & francij1 - Many thanks for the info. £3k for a scan & biopsy is a lot of hard earned cash, I need to think hard about that one.
User
Posted 17 Oct 2018 at 22:31
Most of mine was paid for by insurance. The private consultations are worth it just for the free coffee!
User
Posted 17 Oct 2018 at 23:20

I think you are getting spooked unnecessarily - your PSA is fairly steady* rather than showing a rapid rise so 10 weeks isn't a long time to wait and it means you can get another PSA test just before Christmas which may allay your worries or increase your weaponry when asking for a scan. 

If you are very anxious, why not just call the urology department or the urologist's secretary and ask whether the appointment can be brought forward?

 

*Your doubling time is more than 3 years and your PSA increase is less than 0.1 per month which I suppose technically could simply be down to enlargement. That may be part of why your appointment is 10 weeks away. 

Edited by member 17 Oct 2018 at 23:25  | Reason: To add info

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

User
Posted 17 Oct 2018 at 23:44
LynEyre - good point, thank you.
 
Forum Jump  
©2019 Prostate Cancer UK