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Moving up North

User
Posted 09 Feb 2023 at 18:56

Hello,

Can ask if anyone on PCUK may have moved from  one NHS Trust to another whilst still being Treated/monitored

And if so how easy was the transfer from one Trust to the other.

Next month i will be 2 years post RALP and currently having PSA Tested every 6 months, and as from last week 0.1.

we are moving from Kent to North Yorkshire, and hoping this process of Trust swapping will be straight forward.

kind regards Van

User
Posted 09 Feb 2023 at 23:29
Okay - you should be able yo transfer to a urologist at Harrogate District hospital or York hospital, even if only nominally and your new GP takes on your PSA monitoring. If you move to York and then have a recurrence in the future, there is a minibus service to Leeds for treatment. Harrogate patients also get sent to Leeds for RT although I don't think they have a minibus!

Also worth noting that your PSA may not be exactly the same after you move as different labs can have small variations in testing.

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

User
Posted 10 Feb 2023 at 10:30

Lyn is right about variation in results from different labs. Just for information: My 'private' hospital PSA was steady at 'less' than 0.003 for eight years until we moved and the NHS test results were 0.05 and 0.07 over two years. I was obviously concerned, went back to the 'private' hospital and it confirmed my PSA was still 'less' than 0.003. Also it may be useful to some members know that the critical level of PSA is 0.1 when you have to consider salvage radiation-therapy if you have had prostatectomy. In my experience, I have found that getting information from medics can be like pulling teeth! Sorry medics, most of you do a great job.

 

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 14 Feb 2023 at 13:23

I moved NHS Trusts following my diagnosis, I would have to change hospitals for treatment, but didn't like the one offered & changing Trusts would get me nearer to home for ongoing

The actual process was very easy with me being seen by my new Urology Consultant within 3-4 weeks, with surgery 2 weeks later. If there was any delay, it was down to getting the Urology Consultant at the first hospital writing to the new Consultant.

I hope all goes well for you.

Steve

                  

Edited by member 14 Feb 2023 at 13:29  | Reason: Spacings

User
Posted 02 Mar 2023 at 16:49
My experience may not be typical so cannot be relied on to set a president but aspects of it may be of interest to Van.

I was diagnosed with PCa in 2007 whilst living in Surrey and started HT at the Royal Marsden in Sutton with the expectation of having RT there. In the event, I decided to have non standard RT in Germany within a study. with follow up there for three years. However, the Royal Marsden agreed to continue to monitor me, even after I moved to Devon. Several years later and following an MRI scan it was decided I needed further treatment as a (new?) tumour was growing within my Prostate. The Royal Marsden then referred me to UCLH treatment with HIFU or Cryotherapy as suitable within a Trial in 2014. I was given HIFU in 2015. Following this, UCLH suggested I might wish to be monitored by an Oncologist in Devon rather than by them. However, I considered the range of treatment available in Devon and the level of expertise here to be less than in UCLH and they agreed to continue to monitor me. So I had PSA tests done locally but continued to be monitored by phone and I attended UCLH in London for MRI. This proved to have been a good decision because after an initial drop my PSA again began to slowly increase to the point that further treatment was needed. Had I been monitored by a local Oncologist, I am sure I would only have been offered HT but still being under the aegis of UCLH I pressed for a repeat HIFU which was done in December 2021.

There are of course other centres of excellence and I would suggest anybody with PCa thinking of moving to an area lacking reasonable access investigate how easily they can be cared for elsewhere. My situation may have been helped by having taken part in trials and follow up from them.

On another aspect raised in this thread, not wishing to treat older men , particularly with robotic surgery, can be due to the unusual load positioning on the patient imposed by the procedure and other more likely contraindications.

There is doubt about the usefulness of super sensitive tests and some of the top hospitals who have both private and NHS patients subscribe to this view so I don't think it illustrates hospitals who use super sensitive tests are superior to NHS labs who don't.

There does appear to be considerable disparity in diagnosis in the case mentioned which requires further clarification but sometimes it can be a matter of different interpretation. For example UCLH considered from a Choline scan that I had that an iliac Lymph Node affected by cancer which would have meant no repeat HIFU. However, 3 other hospitals I sent the scan to doubted this. I then paid for a 68 Gallium PSMA scan which showed no cancer in it and eventually got my repeat HIFU. So interpretation can be very important although sometimes differently assessed.

Barry
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User
Posted 09 Feb 2023 at 21:57
It should be fairly straightforward but depends a bit on where in N Yorks you are going. If you need further treatment in the future, you may have to travel ... some NY and York men have to come to Leeds, those in the North East part might be sent to Teeside, those in the West / North West might end up at Lancaster. I think Selby residents go to Pinderfields in Wakefield?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 09 Feb 2023 at 23:17

Hello Lyn,

Thanks for your reply, it will probably be Knaresborough, although Harrogate or York may be possibilities aswell .

regards van 

User
Posted 09 Feb 2023 at 23:29
Okay - you should be able yo transfer to a urologist at Harrogate District hospital or York hospital, even if only nominally and your new GP takes on your PSA monitoring. If you move to York and then have a recurrence in the future, there is a minibus service to Leeds for treatment. Harrogate patients also get sent to Leeds for RT although I don't think they have a minibus!

Also worth noting that your PSA may not be exactly the same after you move as different labs can have small variations in testing.

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

User
Posted 10 Feb 2023 at 10:30

Lyn is right about variation in results from different labs. Just for information: My 'private' hospital PSA was steady at 'less' than 0.003 for eight years until we moved and the NHS test results were 0.05 and 0.07 over two years. I was obviously concerned, went back to the 'private' hospital and it confirmed my PSA was still 'less' than 0.003. Also it may be useful to some members know that the critical level of PSA is 0.1 when you have to consider salvage radiation-therapy if you have had prostatectomy. In my experience, I have found that getting information from medics can be like pulling teeth! Sorry medics, most of you do a great job.

 

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 14 Feb 2023 at 13:23

I moved NHS Trusts following my diagnosis, I would have to change hospitals for treatment, but didn't like the one offered & changing Trusts would get me nearer to home for ongoing

The actual process was very easy with me being seen by my new Urology Consultant within 3-4 weeks, with surgery 2 weeks later. If there was any delay, it was down to getting the Urology Consultant at the first hospital writing to the new Consultant.

I hope all goes well for you.

Steve

                  

Edited by member 14 Feb 2023 at 13:29  | Reason: Spacings

User
Posted 20 Feb 2023 at 18:11

Hi Pratap

Having read in your post that a PSA level of 0.1 is considered 'Critical and in need of salvage radiation therapy ' I am now totally confused.  I had a PSA level of 2 for around eight years and wasn't even under 'Active Surveillance ' I just went every second year for Blood PSA as and when I wanted to keep track. It wasn't until it reach PSA 3 that I was sent to a Urologist. Am I confusing two different Gradings or is my GP too laid back?

Scott

 

 

User
Posted 20 Feb 2023 at 19:10

Originally Posted by: Online Community Member

Hi Pratap

Having read in your post that a PSA level of 0.1 is considered 'Critical and in need of salvage radiation therapy ' I am now totally confused.  I had a PSA level of 2 for around eight years and wasn't even under 'Active Surveillance ' I just went every second year for Blood PSA as and when I wanted to keep track. It wasn't until it reach PSA 3 that I was sent to a Urologist. Am I confusing two different Gradings or is my GP too laid back?

Scott

Pratap has already had his prostate removed so should have a very low PSA reading - less than 0.2 

You have a prostate so a reading up to 3.0 would be considered normal

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

User
Posted 21 Feb 2023 at 14:10

Hi Scott

I am confused about your confusion! Let me check if we are on the same page. I assume from you 'CV' that you are trying to decide on what treatment to choose. Have you had a diagnosis yet? If so what are the numbers for Gleason score etc?  Do not confuse your PSA pre-treatment  which is likely to be in the range 3.9 to 5.6  or even lower depending on age. Your PSA of 2 and 3 is well below the 'critical' value before you would worry about it. I was talking about PSA values after treatment; the critical values for any follow up treatment is  0.1  to. 0.2 when recurrence of cancer is suspected depending on the treatment. I hasten to add that I have no medical knowledge; what I know is through my research when I was diagnosed 12 years ago. I hope this is helpful

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 01 Mar 2023 at 00:38
Hi Pratap

Sorry for delay in replying, having had a zoom consultation with a Private Consultant believe it or not he is even more confused than both of us! He said my PSA Report and Blood results don't match up, plus MRI report is so badly written it seems to be about two different patients! One report seems to suggest possible spread whilst other suggests it's contained. He is asking to view actual MRI but thinks I may need PET Scan and Bloods redone. That will involve flying South for PET scan, flying back home and later flying South for Treatment and then back home!

So one step forward and 3 back!

User
Posted 01 Mar 2023 at 14:19
Hi Scott

It seems to me that you have decided to undergo HIFU treatment which is available only in a private clinic in London. Have you ruled out robotic assisted prostatectomy which is now available quite widely. I know from my experience it is very difficult to choose. I opted for surgery because my urologist was very confident that the cancer was well contained with good margins and in spite of my age (then 71) he was happy to take me on. Robotic prostatectomy is not a bad option if all the conditions are right. I am lucky that now at 84 I am still free of cancer. Specialists tend to recommend their own treatment, so be careful. Hope things get sorted out soon.

Warm regards

Pratap

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 01 Mar 2023 at 15:43
Thanks for that advice Pratap and you're certainly a great advert for the De vinci Prostactomy Treatment! That was what I originally spoke to my NHS Consultant about but it was immediately dismissed and when I asked why, I was told that no surgery is performed on a man aged 74 too risky, which is patently nonsense. I said I agreed that if a man was obese; heavy smoker and drinker he would be a risk, but even at 50 he'd be a risk! I'm slim; never smoked; only have an occasional glass of a fine single Malt and have always kept fit, I thought their Protocol was Agest! Didn't go down well. What was being offered was Rads and Hormone Treatment, I've left the offer on the table to explore Private HIFU which seems less invasive; quick recovery; less risk of incontinence and I get to keep my sex life! But now this Private Consultant is casting doubt on NHS Test results. I just don't know what to think.

Scott

User
Posted 02 Mar 2023 at 11:58

Sometimes good advice is very difficult to come by. I have just listened to a recording of a Zoom meeting organised by Bob Tarbet via PCUK where a well known consultant was talking about prostatectomy and other treatments. You may like to listen to it. It seems to me that if the cancer is well confined with clear margin then prostatectomy is probably a very good option. Focal therapy, like HIFU, is targeted and on the face of it is a great option because it has minimal side effect with respect to ED and incontinence. But because it relies on very accurate location of cancer in the gland it is possible that not all 'targets' are seen in MRI images and therefore they may be cancer cell floating around. Also there is the danger of collateral damage to bladder and/or bowel area.

I am not surprised that your Private Consultant is casting doubt on the NHS results. I hope you can get the state of your prostate assessed properly so that you can make the right decision. The NHS does it best but sometimes it is second best. For example, my PSA over the past 12 years has been less than 0.003 done privately compared with the NHS at 0.07 because the NHS does not use laboratories which carry out 'super sensitive' tests!
'
There is little doubt that if you go private you will be able to choose the best consultants but be aware that the post surgery care may be very poor as I found. I had my surgery carried out at the Wellington Hospital in London and the after care was non-existent.

Warm regards
Pratap

 

Edited by member 03 Mar 2023 at 12:08  | Reason: Not specified

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 02 Mar 2023 at 16:49
My experience may not be typical so cannot be relied on to set a president but aspects of it may be of interest to Van.

I was diagnosed with PCa in 2007 whilst living in Surrey and started HT at the Royal Marsden in Sutton with the expectation of having RT there. In the event, I decided to have non standard RT in Germany within a study. with follow up there for three years. However, the Royal Marsden agreed to continue to monitor me, even after I moved to Devon. Several years later and following an MRI scan it was decided I needed further treatment as a (new?) tumour was growing within my Prostate. The Royal Marsden then referred me to UCLH treatment with HIFU or Cryotherapy as suitable within a Trial in 2014. I was given HIFU in 2015. Following this, UCLH suggested I might wish to be monitored by an Oncologist in Devon rather than by them. However, I considered the range of treatment available in Devon and the level of expertise here to be less than in UCLH and they agreed to continue to monitor me. So I had PSA tests done locally but continued to be monitored by phone and I attended UCLH in London for MRI. This proved to have been a good decision because after an initial drop my PSA again began to slowly increase to the point that further treatment was needed. Had I been monitored by a local Oncologist, I am sure I would only have been offered HT but still being under the aegis of UCLH I pressed for a repeat HIFU which was done in December 2021.

There are of course other centres of excellence and I would suggest anybody with PCa thinking of moving to an area lacking reasonable access investigate how easily they can be cared for elsewhere. My situation may have been helped by having taken part in trials and follow up from them.

On another aspect raised in this thread, not wishing to treat older men , particularly with robotic surgery, can be due to the unusual load positioning on the patient imposed by the procedure and other more likely contraindications.

There is doubt about the usefulness of super sensitive tests and some of the top hospitals who have both private and NHS patients subscribe to this view so I don't think it illustrates hospitals who use super sensitive tests are superior to NHS labs who don't.

There does appear to be considerable disparity in diagnosis in the case mentioned which requires further clarification but sometimes it can be a matter of different interpretation. For example UCLH considered from a Choline scan that I had that an iliac Lymph Node affected by cancer which would have meant no repeat HIFU. However, 3 other hospitals I sent the scan to doubted this. I then paid for a 68 Gallium PSMA scan which showed no cancer in it and eventually got my repeat HIFU. So interpretation can be very important although sometimes differently assessed.

Barry
 
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