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User
Posted 25 Dec 2017 at 01:18

Hi folks,

Some of you may remember that earlier this year I had an appointment with Professor E who in charge of the 'FORECAST' HIFU trial at UCLH for salvage treatment for men who had failed RT.  (I had HIFU there in July 2015).  I asked if my PSA continued to rise would he authorize a further scan, possibly the 68 Gallium or another advanced scan so the source could perhaps be confirmed. (UCLH had already advised that they believed the uptake of Choline in an iliac node indicated it was cancerous and an area of the Prostate was equivical). Professor E said he would not authorize any further scans because the treatment would be only HT regardless as the two major treatments I had had already were enough.  I asked if this was because of my age and was told it was not.

In the interim, I had sent the aforementioned scans on disc to the Royal Marsden, to my RT treating Hospital in Heidelberg  and to the QE in Birmingham where I originally had a second opinion in 2007/8, all of whom said they were not convinced from the scans that there was any cancer.  However. the Marsden said that if my PSA continued to rise my GP could refer me back to them and University Hospital Heidelberg recommended a 68 Gallium PSMA scan if my PSA reached 0.7 and depending on results held out the possibility of some further HT/RT. (PSA continues to rise and was last tested at 0.99 so already above the suggested level for the scan).

I wrote to UCLH last month and asked if they would reconsider giving me the scan as others were holding out the possibility of further radical treatment and I would have thought UCLH would have wanted to know if it was shown more definitively how well the HIFU they gave me had worked.  Unfortunately, they have declined, although I was told that if I had the scan done elsewhere they would be interested in the outcome!

So I can go to plan 'B' and get my GP to refer me back to the Marsden and see what they will offer in terms of a scan and possible treatment or go to plan 'C' and go to Heidelberg, where the latter would have to be as a private patient.  It is possible that UCLH would give me the scan as a private patient but most unlikely in view of the foregoing that they would provide treatment other than HT so I would have to go elsewhere for treatment.

From a previous meeting I had with my GP, I know he is leaving the way forward to me.  Hmmmmm!

 

Edited by member 25 Dec 2017 at 14:57  | Reason: Not specified

Barry
User
Posted 25 Dec 2017 at 01:18

Hi folks,

Some of you may remember that earlier this year I had an appointment with Professor E who in charge of the 'FORECAST' HIFU trial at UCLH for salvage treatment for men who had failed RT.  (I had HIFU there in July 2015).  I asked if my PSA continued to rise would he authorize a further scan, possibly the 68 Gallium or another advanced scan so the source could perhaps be confirmed. (UCLH had already advised that they believed the uptake of Choline in an iliac node indicated it was cancerous and an area of the Prostate was equivical). Professor E said he would not authorize any further scans because the treatment would be only HT regardless as the two major treatments I had had already were enough.  I asked if this was because of my age and was told it was not.

In the interim, I had sent the aforementioned scans on disc to the Royal Marsden, to my RT treating Hospital in Heidelberg  and to the QE in Birmingham where I originally had a second opinion in 2007/8, all of whom said they were not convinced from the scans that there was any cancer.  However. the Marsden said that if my PSA continued to rise my GP could refer me back to them and University Hospital Heidelberg recommended a 68 Gallium PSMA scan if my PSA reached 0.7 and depending on results held out the possibility of some further HT/RT. (PSA continues to rise and was last tested at 0.99 so already above the suggested level for the scan).

I wrote to UCLH last month and asked if they would reconsider giving me the scan as others were holding out the possibility of further radical treatment and I would have thought UCLH would have wanted to know if it was shown more definitively how well the HIFU they gave me had worked.  Unfortunately, they have declined, although I was told that if I had the scan done elsewhere they would be interested in the outcome!

So I can go to plan 'B' and get my GP to refer me back to the Marsden and see what they will offer in terms of a scan and possible treatment or go to plan 'C' and go to Heidelberg, where the latter would have to be as a private patient.  It is possible that UCLH would give me the scan as a private patient but most unlikely in view of the foregoing that they would provide treatment other than HT so I would have to go elsewhere for treatment.

From a previous meeting I had with my GP, I know he is leaving the way forward to me.  Hmmmmm!

 

Edited by member 25 Dec 2017 at 14:57  | Reason: Not specified

Barry
User
Posted 25 Dec 2017 at 15:58

Yes Ian, scans are very expensive in Europe especially the more advanced ones and there is indeed a shortage of trained staff and lack of state of art equipment in the UK in particular, I did read a report that scans was one of the areas hospitals were being asked to cut back on and another was delaying not urgent operations to enable hospitals cope with extra A&E need over winter. I think that unless the NHS is much better resourced, the situation will get worse and people will increasingly have to take out private insurance cover or self fund if they want prompt and cutting edge treatment, in some cases going abroad. This already is the case with dentistry although good work can be done in the UK at a price. Several years ago my dentist told me that the NHS was only providing a basic service and due to the very high cost of private treatment in the UK, I had dental work done in Budapest which was much less expensive. Of course, due to the fall in the value of the pound, even this is becoming an increasingly costly option.

Barry
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User
Posted 25 Dec 2017 at 12:19
Hi Barry, it is frustrating that there seems to be a scanning issue in the UK due to a lack of funds and trained radiographers.

I have looked at a couple of videos recently where it is clear that scanning is the best way to determine what is going on and decide further treatment. One of the videos showed that patients can have cancer progress without PSA rising.

I intend to ask my oncologist for a further scan in February when I see him. I would like scan evidence of how my salvage radiotherapy has gone etc.

Ian.

Ido4

User
Posted 25 Dec 2017 at 15:58

Yes Ian, scans are very expensive in Europe especially the more advanced ones and there is indeed a shortage of trained staff and lack of state of art equipment in the UK in particular, I did read a report that scans was one of the areas hospitals were being asked to cut back on and another was delaying not urgent operations to enable hospitals cope with extra A&E need over winter. I think that unless the NHS is much better resourced, the situation will get worse and people will increasingly have to take out private insurance cover or self fund if they want prompt and cutting edge treatment, in some cases going abroad. This already is the case with dentistry although good work can be done in the UK at a price. Several years ago my dentist told me that the NHS was only providing a basic service and due to the very high cost of private treatment in the UK, I had dental work done in Budapest which was much less expensive. Of course, due to the fall in the value of the pound, even this is becoming an increasingly costly option.

Barry
User
Posted 25 Dec 2017 at 22:01

Barry,
Can I just say that is a very good and detailed post, looks like it is all about money, I would not have got my six Dox/Chemo on my recurrence had I not paid for a private consultation with my own Onco at the @@ had I not paid £3@@ for about a twenty minute chat

Prior to the chat I was only offered HT on recurrence , but a friend on the forum who is getting private treatment told me about treatment for recurrent Prostate Cancer


Barry

Edited by member 25 Dec 2017 at 22:06  | Reason: Not specified

 
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