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Bracing ourselves

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User
Posted 27 Jul 2018 at 09:23

My husband (He is 67, I am 59) went for a routine blood test for cholestorol in early July 2018 which resulted in a letter from GP asking him to come in (‘nothing to worry about’).  GP Appointment duly made and transpires he has a PSA of 8.3.  DH had a DSE and GP thought prostate seemed a little elongated and said he needed to be referred.  He went to see a Urologist on 20 July who said his prostate felt hard and he would need a TRUS biopsy.  The Urologist said that the hospital did not offer scans before biopsy on cost grounds.  After researching on PCUK and other UK charity sites, DH and I decided he should pay for a multi parametric MRI and we have found a hospital in North Wales which offers this and he is going for the scan in a couple of days time with results available 7-10 days.  I know these scans can still miss things but at end of day we have to go by our instincts.  For the last few years he has been having PSA tests via a local Lions charity and never had any problems with results but we missed the last one in 2017 as we were away unfortunately .... did we give that a second thought at the time - course not!  We are both trying to remain positive - he is blessed with a strong and stoical personality - unlike me, total opposite.  For info, he’s has always been fit and healthy - only 4/5 days off sick in total from work in 36 years.  He’s always had to get up and go to the loo in the night for last 20 years so no new symptoms.  As a newbie I would just like to thank you all for your posts - I have found this particular community to be a source of positively and strength.  

Liz

User
Posted 27 Jul 2018 at 10:48

Sounds like are doing all the right things (MPMRI then biopsy). PSA is still pretty low so hopefully IF it is PCA you will have all options available to you.

If you do get a + diagnosis there are a bunch of useful nomogram here to play around with :
https://www.mskcc.org/nomograms/prostate

 

Fingers crossed for your MPMRI results

User
Posted 27 Jul 2018 at 11:10

I think it is scandalous that you will have to pay to go privately for what I assume is a mpMRI scan.

I know there seems to be an issue in Wales with this in particular, but many hospitals in England also don't offet a scan first.

In my case I didn't fit my local hospitals criteria for a scan first, but stood my ground (see my bio) and my local hospital eventually relented.

The below link from this website is also relevant albeit too late for you.

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

I very much hope all goes well for you.

 

 

User
Posted 27 Jul 2018 at 11:15
Hi Liz,

Sorry you join us due to your OH's symptoms (he has not had PCa confirmed so far although this is a possibility).

The TRUS biopsy is usually of 8-12 cores and the chances of finding any cancer will be much improved with the benefit of the mpMRI, although even this scan is not 100% in showing cancer.

Symptoms of PCa are not always evident and more frequent need to urinate is often taken as being a weakening of muscles and bladder as indeed can sometimes be the case.

Should PCa be confirmed, consideration will have to be given regarding treatment. In some cases it may be felt that this may be deferred along with potential side effects that result for treatment. In such cases a man is actively monitored. However, where radical treatment it thought more appropriate, the urologist and oncologist may suggest what they feel is best or leave it to the patient to decide which treatment option open to him he wants to adopt.

I would suggest that if not now, if/when you receive a possitive PCa diagnosis, you download or obtain a hard copy of the 'Toolkit' from the publications section of this charity.

Barry
User
Posted 27 Jul 2018 at 11:22

Shocking that he was denied an mpMRI. Where do you live?

If you don’t mind me asking, how much will the MRI cost.? Is the machine 3T resolution? (Similar to Hi-Def or 4K resolution on a telly, which is what you need to go for, not the inferior 1.5T).

I think my mate had his 3T mpMRI at a prestigious private London prostate clinic and his was £1500, his template biopsy around £4,500 and if he has to have the op, a snip at £19,950.

I got all of the above on the NHS, just by asking. Try asking again for an MRI first. People here have said they got what they wanted by being slightly awkward, some making complaints to the Head of Urology and to the gaffers at the hospital.

Best of luck for hubby’s outcome.

Cheers, John.

Here’s a hyper-link to John01’s suggestion above: mpMRI before biopsy

Edited by member 27 Jul 2018 at 11:28  | Reason: Not specified

User
Posted 27 Jul 2018 at 13:57

Originally Posted by: Online Community Member

Shocking that he was denied an mpMRI. Where do you live?

***************

I got all of the above on the NHS, just by asking. Try asking again for an MRI first. People here have said they got what they wanted by being slightly awkward, some making complaints to the Head of Urology and to the gaffers at the hospital.

 

<<sigh>> 

 

Have you actually looked at the inter-active map and seen how few areas actually deliver mpMRI as standard, and more significant, how many areas they don't even have the equipment? No point banging on about it to people who don't have the option - being 'awkward' isn't going to magically make the CCG go out and buy the stuff / train the staff. Perhaps do like some of the rest of us, get involved in fundraising, help local hospitals to buy the equipment they need, raise funds for PCUK to keep on lobbying instead of keeping on advising people how wonderful the thing they can't have is. 

 

Liz, £900 seems like a bargain! Be aware though that template biopsy has its down side - perhaps not make a decision about which kind of biopsy might be best until after you have the scan results.  

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

User
Posted 27 Jul 2018 at 14:29

Hi Matron (Lyn),

Of course I have looked at the MRI map, and Wales (with a socialist devolved government) seems to have a paucity of MRI scanners of whatever resolution. But they do get free prescriptions....

I thought Liz lived there, whereas it turns out she is in Shropshire, where there are loads of scanners within an hour or so’s drive, think Brum or even here in Coventry. I went to Guildford for my operation, 115 miles away. Can’t her husband be referred to somewhere with the proper facilities?

Re. Template biopsy - I was forewarned by two friends not to be “palmed off” with a TRUS biopsy, both having had one and then being recalled for a much more accurate template biopsy, and these pages are littered with comments from other men with the same experience. I cannot say either way as I eschewed the offer of a TRUS. In any event, both would still have found my cancer.

I am all for fundraising and raising awareness for this now very personal cause, and will be organising two events to that end later this year.

Cheers, John

https://www.nihr.ac.uk/news-and-events/news/archive-news.htm?postid=5220

Edited by member 27 Jul 2018 at 14:41  | Reason: Not specified

User
Posted 27 Jul 2018 at 14:56

A link to the interactive map was provided and I'm sorry but it is a scandal that a scan is not provided  before a biopsy.

In my case I stood my ground and got the scan. My oncologist advised me that this was a crucial decision which had greatly assisted the multi disciplinary team in deciding on treatment options.

It is appreciated that not all areas of the country can conduct scans before biopsy just yet, but the more people who ask the question will mean greater effort is made to improve on the current poor situation.

 

User
Posted 31 Jul 2018 at 14:07
Hi Liz,

Any ‘tweaking’ of the prostate or other stimulation such as ejaculation, DRE, prostate G-spot milking, anal sex, biopsies, etc, etc,, inevitably increase PSA levels, albeit temporarily.

Personally, if I was your old feller, I would hang out for a template biopsy rather than a TRUS.

If you like, read my other posts on this subject.

No doubt Matron will admonish me for advocating wasting our NHS hundreds of thousands of pounds, but where is the economy of a TRUS biopsy, having to be followed by a template biopsy shortly afterwards?

Hope it turns out OK for you both.

Cheers, John

User
Posted 31 Jul 2018 at 14:40
G spot milking? Really annoying how you find out all this stuff when it's too late! !

Or maybe not as I have no idea what it is - urban dictionary here I come!!

Re template biopsy - If you have a definite target from an MPMRI a template is probably not worth the additional risk.

Show Most Thanked Posts
User
Posted 27 Jul 2018 at 10:48

Sounds like are doing all the right things (MPMRI then biopsy). PSA is still pretty low so hopefully IF it is PCA you will have all options available to you.

If you do get a + diagnosis there are a bunch of useful nomogram here to play around with :
https://www.mskcc.org/nomograms/prostate

 

Fingers crossed for your MPMRI results

User
Posted 27 Jul 2018 at 11:10

I think it is scandalous that you will have to pay to go privately for what I assume is a mpMRI scan.

I know there seems to be an issue in Wales with this in particular, but many hospitals in England also don't offet a scan first.

In my case I didn't fit my local hospitals criteria for a scan first, but stood my ground (see my bio) and my local hospital eventually relented.

The below link from this website is also relevant albeit too late for you.

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

I very much hope all goes well for you.

 

 

User
Posted 27 Jul 2018 at 11:15
Hi Liz,

Sorry you join us due to your OH's symptoms (he has not had PCa confirmed so far although this is a possibility).

The TRUS biopsy is usually of 8-12 cores and the chances of finding any cancer will be much improved with the benefit of the mpMRI, although even this scan is not 100% in showing cancer.

Symptoms of PCa are not always evident and more frequent need to urinate is often taken as being a weakening of muscles and bladder as indeed can sometimes be the case.

Should PCa be confirmed, consideration will have to be given regarding treatment. In some cases it may be felt that this may be deferred along with potential side effects that result for treatment. In such cases a man is actively monitored. However, where radical treatment it thought more appropriate, the urologist and oncologist may suggest what they feel is best or leave it to the patient to decide which treatment option open to him he wants to adopt.

I would suggest that if not now, if/when you receive a possitive PCa diagnosis, you download or obtain a hard copy of the 'Toolkit' from the publications section of this charity.

Barry
User
Posted 27 Jul 2018 at 11:22

Shocking that he was denied an mpMRI. Where do you live?

If you don’t mind me asking, how much will the MRI cost.? Is the machine 3T resolution? (Similar to Hi-Def or 4K resolution on a telly, which is what you need to go for, not the inferior 1.5T).

I think my mate had his 3T mpMRI at a prestigious private London prostate clinic and his was £1500, his template biopsy around £4,500 and if he has to have the op, a snip at £19,950.

I got all of the above on the NHS, just by asking. Try asking again for an MRI first. People here have said they got what they wanted by being slightly awkward, some making complaints to the Head of Urology and to the gaffers at the hospital.

Best of luck for hubby’s outcome.

Cheers, John.

Here’s a hyper-link to John01’s suggestion above: mpMRI before biopsy

Edited by member 27 Jul 2018 at 11:28  | Reason: Not specified

User
Posted 27 Jul 2018 at 13:57

Originally Posted by: Online Community Member

Shocking that he was denied an mpMRI. Where do you live?

***************

I got all of the above on the NHS, just by asking. Try asking again for an MRI first. People here have said they got what they wanted by being slightly awkward, some making complaints to the Head of Urology and to the gaffers at the hospital.

 

<<sigh>> 

 

Have you actually looked at the inter-active map and seen how few areas actually deliver mpMRI as standard, and more significant, how many areas they don't even have the equipment? No point banging on about it to people who don't have the option - being 'awkward' isn't going to magically make the CCG go out and buy the stuff / train the staff. Perhaps do like some of the rest of us, get involved in fundraising, help local hospitals to buy the equipment they need, raise funds for PCUK to keep on lobbying instead of keeping on advising people how wonderful the thing they can't have is. 

 

Liz, £900 seems like a bargain! Be aware though that template biopsy has its down side - perhaps not make a decision about which kind of biopsy might be best until after you have the scan results.  

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

User
Posted 27 Jul 2018 at 14:29

Hi Matron (Lyn),

Of course I have looked at the MRI map, and Wales (with a socialist devolved government) seems to have a paucity of MRI scanners of whatever resolution. But they do get free prescriptions....

I thought Liz lived there, whereas it turns out she is in Shropshire, where there are loads of scanners within an hour or so’s drive, think Brum or even here in Coventry. I went to Guildford for my operation, 115 miles away. Can’t her husband be referred to somewhere with the proper facilities?

Re. Template biopsy - I was forewarned by two friends not to be “palmed off” with a TRUS biopsy, both having had one and then being recalled for a much more accurate template biopsy, and these pages are littered with comments from other men with the same experience. I cannot say either way as I eschewed the offer of a TRUS. In any event, both would still have found my cancer.

I am all for fundraising and raising awareness for this now very personal cause, and will be organising two events to that end later this year.

Cheers, John

https://www.nihr.ac.uk/news-and-events/news/archive-news.htm?postid=5220

Edited by member 27 Jul 2018 at 14:41  | Reason: Not specified

User
Posted 27 Jul 2018 at 14:56

A link to the interactive map was provided and I'm sorry but it is a scandal that a scan is not provided  before a biopsy.

In my case I stood my ground and got the scan. My oncologist advised me that this was a crucial decision which had greatly assisted the multi disciplinary team in deciding on treatment options.

It is appreciated that not all areas of the country can conduct scans before biopsy just yet, but the more people who ask the question will mean greater effort is made to improve on the current poor situation.

 

User
Posted 27 Jul 2018 at 16:01

When my local hospital advised me that I didn't meet the criteria for a scan before biopsy, I went back to my local GP and asked to be referred to another hospital not far away which followed the PROMIS criteria of scan before biopsy. (See my bio)

This ultimately resulted in my local hospital changing their minds and conducting a mpMRI before biopsy.

It also helped with the biopsy as instead of having a saturation biospy (40 plus needles), I had a targeted mri fusion biopsy (transperineal biopsy) with 12 needles and a lot less discomfort (actually none at all) thereafter.

User
Posted 28 Jul 2018 at 08:53

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Shocking that he was denied an mpMRI. Where do you live?

***************

I got all of the above on the NHS, just by asking. Try asking again for an MRI first. People here have said they got what they wanted by being slightly awkward, some making complaints to the Head of Urology and to the gaffers at the hospital.

 

<<sigh>> 

 

Have you actually looked at the inter-active map and seen how few areas actually deliver mpMRI as standard, and more significant, how many areas they don't even have the equipment? No point banging on about it to people who don't have the option - being 'awkward' isn't going to magically make the CCG go out and buy the stuff / train the staff. Perhaps do like some of the rest of us, get involved in fundraising, help local hospitals to buy the equipment they need, raise funds for PCUK to keep on lobbying instead of keeping on advising people how wonderful the thing they can't have is. 

 

Liz, £900 seems like a bargain! Be aware though that template biopsy has its down side - perhaps not make a decision about which kind of biopsy might be best until after you have the scan results.  

 

Nothwithstand the wonderful work that local fundraisers do it is my experience that in order to get excellent results from the NHS you have to be both proactive and sometimes beligerent.

If you don't you risk poor service (The NHS is a service not a charity paid for by tax payers) and at worst life threatening incompetence.

This has been observed through several family and friends illnesses.

Edited by member 28 Jul 2018 at 08:54  | Reason: Not specified

User
Posted 31 Jul 2018 at 13:02

They should do blood tests before DRE Or wait a few days after.

 

Ido4

User
Posted 31 Jul 2018 at 14:07
Hi Liz,

Any ‘tweaking’ of the prostate or other stimulation such as ejaculation, DRE, prostate G-spot milking, anal sex, biopsies, etc, etc,, inevitably increase PSA levels, albeit temporarily.

Personally, if I was your old feller, I would hang out for a template biopsy rather than a TRUS.

If you like, read my other posts on this subject.

No doubt Matron will admonish me for advocating wasting our NHS hundreds of thousands of pounds, but where is the economy of a TRUS biopsy, having to be followed by a template biopsy shortly afterwards?

Hope it turns out OK for you both.

Cheers, John

User
Posted 31 Jul 2018 at 14:40
G spot milking? Really annoying how you find out all this stuff when it's too late! !

Or maybe not as I have no idea what it is - urban dictionary here I come!!

Re template biopsy - If you have a definite target from an MPMRI a template is probably not worth the additional risk.

 
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