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User
Posted 09 Nov 2019 at 16:35

Does anyone have any info on regional differences in therapy, and possibly the best and worst places to live from the point of view of treatment quality or success?

 

User
Posted 11 Nov 2019 at 10:31

Hi,  That's a good question.  Often people comment on treatment and it's a personal experience, it isn't often we hear of consistently bad surgeons or consistently long delays and on here pointers to such might not be allowed.

I only looked at hospitals in my own region and the records of surgeons on the BAUS (The British Association of Urological Surgeons) website.   I knew that one hospital not too far away had a robot which at the time I thought would be better. 

In the end the surgeon I had at the nearest hospital was a person of long experience and I was pretty confident whatever method he used.  That hospital now has a robot and I wondered if performance could go down if someone who'd done non-robot laparoscopic suddenly went to robot.

There is an element of fortune and each case is a bit different.  Some surgeons are more choosy about who they operate on and might have great results but only done easy ones.

From your profile it seems you're worried about the consultant appointments and perhaps that's partly why you're asking.  I only saw the consultant once during diagnosis and met the surgeon once.  All other appointments were handled by doctors or nurses.

If my assumption above about time between appointments is true perhaps you could say a bit more.  Some people do look around for different places and different surgeons.  There are also different types of operation and you can get into debates about the merits of them.

All the best,
Peter

 

Edited by member 11 Nov 2019 at 10:33  | Reason: Not specified

User
Posted 11 Nov 2019 at 13:25
My personal experience was that my local hospitals and group does not have any robots for use in RP and does not do brachytherapy.

I had no alternative but to travel out of area to have brachytherapy. I went to the Royal Berkshire Hospital and had excellent treatment.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 11 Nov 2019 at 15:25

You're quite probably correct thinking treatment away from major centres isn't as good.   We live in Lancashire and people in distant parts of Cumbria have to travel to Blackburn for prostate surgery.  Whereas people much nearer in Blackpool travel to Preston which is nearer to Cumbria.   At least that was the case 3 years ago.   Also Brachytherapy wasn't available at all.  Manchester would be the place I presume for that.

I'd have been irritated if I'd had to travel to Blackburn which isn't a place I know at all and for my wife to drive there in mid December would have been a worry.  Blackburn was the place with a robot at the time.

North Wales has no major centres as far as I know.  I'd think Birkenhead, Chester or Liverpool would be nearest.  There is a regular writer on here with knowledge of that area.    However not moving seems wise until your situation has stabilised at least.

Edited by member 11 Nov 2019 at 15:28  | Reason: Not specified

User
Posted 11 Nov 2019 at 16:40
I had great treatment at the Royal Surrey County Hospital in Guildford. Get an appointment there for a second opinion with the surgeon, Professor Whocannotbenamedhere, a world authority on PCa.

Moreover, there is also a world-renowned oncologist specialising in PCa at the Royal Marsden, down your way (who also cannot be named here). Talk to him as well and you’ve covered all bases.

Best of luck.

Cheers, John.

User
Posted 11 Nov 2019 at 17:20

I know of a good prof in Chester, he did not treat my husband,  but he is very well respected. I met him at a conference and he communicated very well, has a good “bed side manner” I am also aware of men who have been treated by him, both NHS and privately, and they speak highly of him. 

 

 

User
Posted 11 Nov 2019 at 18:03
I was a patient of the Royal Marsden at Sutton but moved to North Devon for family reasons. I did ask to be monitored still by the Marsden and they agreed to this but they referred me to UCLH in London for a HIFU salvage procedure within a trial for failed RT and UCLH now monitor me. It does mean that apart from telephone consultations, I have had to go back to London for scans and a biopsy and possibly for further scans in future. I have reason to believe that there is not the level of expertise here in North Devon so would have to go to Exeter or Bristol and whilst doing that might as well go to London where top people are located and play a large part in participating in National and International trials. Certainly, there are centres of excellence in other major towns too.

Follow up PSA tests can usually be done locally at your GP's surgery but a very significant number of men need follow up treatment at some stage and it would be prudent to ascertain how this might affect you should the need arise in future when considering moving house.

Barry
User
Posted 11 Nov 2019 at 18:04
I was a patient of the Royal Marsden at Sutton but moved to North Devon for family reasons. I did ask to be monitored still by the Marsden and they agreed to this but they referred me to UCLH in London for a HIFU salvage procedure within a trial for failed RT and UCLH now monitor me. It does mean that apart from telephone consultations, I have had to go back to London for scans and a biopsy and possibly for further scans in future. I have reason to believe that there is not the level of expertise here in North Devon so would have to go to Exeter or Bristol and whilst doing that might as well go to London where top people are located and play a large part in participating in National and International trials. Certainly, there are centres of excellence in other major towns too.

Follow up PSA tests can usually be done locally at your GP's surgery but a very significant number of men need follow up treatment at some stage and it would be prudent to ascertain how this might affect you should the need arise in future when considering moving house.

Barry
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User
Posted 11 Nov 2019 at 10:31

Hi,  That's a good question.  Often people comment on treatment and it's a personal experience, it isn't often we hear of consistently bad surgeons or consistently long delays and on here pointers to such might not be allowed.

I only looked at hospitals in my own region and the records of surgeons on the BAUS (The British Association of Urological Surgeons) website.   I knew that one hospital not too far away had a robot which at the time I thought would be better. 

In the end the surgeon I had at the nearest hospital was a person of long experience and I was pretty confident whatever method he used.  That hospital now has a robot and I wondered if performance could go down if someone who'd done non-robot laparoscopic suddenly went to robot.

There is an element of fortune and each case is a bit different.  Some surgeons are more choosy about who they operate on and might have great results but only done easy ones.

From your profile it seems you're worried about the consultant appointments and perhaps that's partly why you're asking.  I only saw the consultant once during diagnosis and met the surgeon once.  All other appointments were handled by doctors or nurses.

If my assumption above about time between appointments is true perhaps you could say a bit more.  Some people do look around for different places and different surgeons.  There are also different types of operation and you can get into debates about the merits of them.

All the best,
Peter

 

Edited by member 11 Nov 2019 at 10:33  | Reason: Not specified

User
Posted 11 Nov 2019 at 11:30

Thanks Peter,

Although not impressed by the consultant appointments to date I’m hopeful that they will improve - my issue was with poor communication rather than anything else. They’re fully aware that I’m not happy so hopefully the next one will be better! (The oncology nurses have been very helpful).

My reason for asking wasn’t to do with that issue. We’ve been considering a move from Surrey (where the Royal Marsden has a good reputation) to north Wales, but those plans are now on hold. I’ve seen some negative news items about healthcare in north Wales, and wondered if in general there was a postcode lottery around the country when it comes to cancer outcomes.

 

User
Posted 11 Nov 2019 at 13:25
My personal experience was that my local hospitals and group does not have any robots for use in RP and does not do brachytherapy.

I had no alternative but to travel out of area to have brachytherapy. I went to the Royal Berkshire Hospital and had excellent treatment.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23  <0.01

User
Posted 11 Nov 2019 at 15:25

You're quite probably correct thinking treatment away from major centres isn't as good.   We live in Lancashire and people in distant parts of Cumbria have to travel to Blackburn for prostate surgery.  Whereas people much nearer in Blackpool travel to Preston which is nearer to Cumbria.   At least that was the case 3 years ago.   Also Brachytherapy wasn't available at all.  Manchester would be the place I presume for that.

I'd have been irritated if I'd had to travel to Blackburn which isn't a place I know at all and for my wife to drive there in mid December would have been a worry.  Blackburn was the place with a robot at the time.

North Wales has no major centres as far as I know.  I'd think Birkenhead, Chester or Liverpool would be nearest.  There is a regular writer on here with knowledge of that area.    However not moving seems wise until your situation has stabilised at least.

Edited by member 11 Nov 2019 at 15:28  | Reason: Not specified

User
Posted 11 Nov 2019 at 16:40
I had great treatment at the Royal Surrey County Hospital in Guildford. Get an appointment there for a second opinion with the surgeon, Professor Whocannotbenamedhere, a world authority on PCa.

Moreover, there is also a world-renowned oncologist specialising in PCa at the Royal Marsden, down your way (who also cannot be named here). Talk to him as well and you’ve covered all bases.

Best of luck.

Cheers, John.

User
Posted 11 Nov 2019 at 17:20

I know of a good prof in Chester, he did not treat my husband,  but he is very well respected. I met him at a conference and he communicated very well, has a good “bed side manner” I am also aware of men who have been treated by him, both NHS and privately, and they speak highly of him. 

 

 

User
Posted 11 Nov 2019 at 18:03
I was a patient of the Royal Marsden at Sutton but moved to North Devon for family reasons. I did ask to be monitored still by the Marsden and they agreed to this but they referred me to UCLH in London for a HIFU salvage procedure within a trial for failed RT and UCLH now monitor me. It does mean that apart from telephone consultations, I have had to go back to London for scans and a biopsy and possibly for further scans in future. I have reason to believe that there is not the level of expertise here in North Devon so would have to go to Exeter or Bristol and whilst doing that might as well go to London where top people are located and play a large part in participating in National and International trials. Certainly, there are centres of excellence in other major towns too.

Follow up PSA tests can usually be done locally at your GP's surgery but a very significant number of men need follow up treatment at some stage and it would be prudent to ascertain how this might affect you should the need arise in future when considering moving house.

Barry
User
Posted 11 Nov 2019 at 18:04
I was a patient of the Royal Marsden at Sutton but moved to North Devon for family reasons. I did ask to be monitored still by the Marsden and they agreed to this but they referred me to UCLH in London for a HIFU salvage procedure within a trial for failed RT and UCLH now monitor me. It does mean that apart from telephone consultations, I have had to go back to London for scans and a biopsy and possibly for further scans in future. I have reason to believe that there is not the level of expertise here in North Devon so would have to go to Exeter or Bristol and whilst doing that might as well go to London where top people are located and play a large part in participating in National and International trials. Certainly, there are centres of excellence in other major towns too.

Follow up PSA tests can usually be done locally at your GP's surgery but a very significant number of men need follow up treatment at some stage and it would be prudent to ascertain how this might affect you should the need arise in future when considering moving house.

Barry
 
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