Well I am pretty much on the far side of my Prostate Cancer.

A very interesting post..

Thank you

Keep on getting better!

Interesting indeed, thank you for the post and the informative content.

Wishing you well

KrisPy

Hello Crippo2 

Thank you for your update. It's great to read you are doing so well.

Sadly this treatment isn't available to all of us.

Best wishes - Brian.

Hi Crippo2 - yes, very interesting- you certainly did your research.   AW

I suppose t I would add onto the words ' ...available to all of us' the words 'as yet'.

Proton treatment on NHS in UK is generally reserved for the very young and, for the slightly older, difficult to reach parts of the upper body. Head/brain/eyes for example.

But looking forward Proton therapy is seen and frequently acknowledged as a gold standard which should become more widely available to all.

Traditionally installation costs have been prohibitive. Enormous complex structures and highly sensitive kit obliged a huge entry level cost.

But, the results really can be impressive, and it is this which is now tending to drive the research into improvements both in terms of structure and delivery.

Lower entry costs can be achieved by repurposing existing treatment facilities, rather than building new. Treatment times (both in terms of numbers and dose delivery) can be radically reduced – there is even talk about treatment (and this is all for prostate cancer) being reduced to one visit and a dose period of less that a second. Not today, not next year but an aspiration to facilitate better treatment at a substantially reduced cost. Achieving this should allow much greater insurer involvement, with, in consequence, much greater patient participation.

I accept that I am on the inside of the proton tent looking out, but there is no doubt that greater opportunities for less invasive treatments are coming. Shame the science does not appear to be being done in the UK!

Finally check out: Mevion Medical Systems for the next generation of proton kit, and ask yourself why you should not have an opportunity for treatment by it.

Hi Crippo2 , in an ideal world we would have enough resource to do this sort of research, but with limited funds it’s just too early to throw more money at it.  I just wanted to throw in the counter argument that there needs to be more evidence of outcomes as shown in this quote below:

Unless further clinical trials are carried out to show that proton beam therapy will benefit men with prostate cancer through increased overall survival or the reduction of side effects, Prostate Cancer UK does not actively encourage men to pay for this treatment or seek it abroad.

Where is the evidence that this is currently the gold standard and PCUK have got it wrong? 

Thankyou for the interesting post Crippo2,

I looked into Proton therapy too as it seemed much more user friendly than surgery or radiotherapy both of which I have had now so can tell you that your experience would have been far different if you had gone the trad route with the NHS.

Your delay in getting an MRI sounds shocking so I am not surprised you looked elsewhere.

Cost wise I was quoted around 20k ish (is that about what you paid?) and the centre was handy for Euston which would have worked.

I was told by two oncologists at different sites that Proton Beam therapy does not work at all for the Prostate as gas in the tissues surrounding it made setting the destination of the Bragg peak tricky.

How did they set the target for the Bragg Peak for you? MRI or PSMA PET scan perhaps?

How did they position you for treatment, Skin tatoos or metal inserts as guides or other?

It seems sensible to me that your PSA result is the actual number rather than the <0.025 that is the lowest most NHS hospitals have decided to give now even though their machines can generally go down to 0.001.

I note that your PSA is gently rising and is far from the 0.175 or 0.2 that triggers a diagnosis of BCR and hopefully it will not reach that.

If it should reach that threshold have they said what the plan is and whether a repeat PBT course can be given to any area that might need attention?

I am particularly interested if PBT can be used for salvage cases after surgery and/or radiotherapy. 

Well done on setting your own course.

I think that whilst approaches like PBT and Lutetium 177 are routinely dismissed as having no evidence base they do show promise and could ultimately be used much earlier to eliminate PC with far fewer side effects and possibly better cure rates than modalities currently in use with fewer side effects.

Due to the expense involved we will have to leave it to other countries to provide the evidence for these treatments as currently this country is not even prepared to go to the expense of allowing men to have PSA tests unless they have a positive BRCA 1 or 2 test which they omit to say they don't offer either.

Catch 22 strikes again.

Best wishes

Albert

Albert

I have replied in Bold

Thankyou for the interesting post Crippo2,

I looked into Proton therapy too as it seemed much more user friendly than surgery or radiotherapy both of which I have had now so can tell you that your experience would have been far different if you had gone the trad route with the NHS.

My PBT was in an NHS hospital, to a Protocol created to cover the extent of my disease and all technology was operated by NHS staff.

Your delay in getting an MRI sounds shocking so I am not surprised you looked elsewhere.

I have pacing wires in me which put fear into the MRI dept. I had bone and PSMA Pet scans and had to wait many months before having a private MRI scan.

Cost wise I was quoted around 20k ish (is that about what you paid?) and the centre was handy for Euston which would have worked.

Because of the extent of spread, I paid a lot more; My house was on the line to cover the cost, but, hey, I was accepting that the post treatment quality of life was most important to my family

I was told by two oncologists at different sites that Proton Beam therapy does not work at all for the Prostate as gas in the tissues surrounding it made setting the destination of the Bragg peak tricky.

You get told what they want you to hear. NHS is hugely invested in Photon, and so it should be, but not to the extent of shutting eyes to alternatives. Also for many, radiation is not necessarily the best choice, and it is really good to see the profile and skills of alternatives becoming so accepted.

How did they set the target for the Bragg Peak for you? MRI or PSMA PET scan perhaps?

Finally, from scans both in NHS and elsewhere – the whole enchilada!

How did they position you for treatment, Skin tatoos or metal inserts as guides or other?

tattoos

It seems sensible to me that your PSA result is the actual number rather than the <0.025 that is the lowest most NHS hospitals have decided to give now even though their machines can generally go down to 0.001.

I note that your PSA is gently rising and is far from the 0.175 or 0.2 that triggers a diagnosis of BCR and hopefully it will not reach that.

If it should reach that threshold have they said what the plan is and whether a repeat PBT course can be given to any area that might need attention?

My age is such that if cancer returns I am likely to die with it than from it, so I am pretty relaxed about it returning. And, who knows treatments will have evolved over the next few years and, guess wot PBT may play a larger part!

I am particularly interested if PBT can be used for salvage cases after surgery and/or radiotherapy. 

Well done on setting your own course.

I think that whilst approaches like PBT and Lutetium 177 are routinely dismissed as having no evidence base they do show promise and could ultimately be used much earlier to eliminate PC with far fewer side effects and possibly better cure rates than modalities currently in use with fewer side effects.

Due to the expense involved we will have to leave it to other countries to provide the evidence for these treatments as currently this country is not even prepared to go to the expense of allowing men to have PSA tests unless they have a positive BRCA 1 or 2 test which they omit to say they don't offer either.

Exactly. As ever the problem is money. We are becoming a poorer country, less able (and possibly less willing) to invest in forward leaning stuff. Certainly there will be few in UK willing to cough up the R&D budget for a customer which takes a highly risk averse attitude to expensive change (my own opinion here)

I believe there is hope for the future. Younger brains, more hungry brains, more innovative brains (not all of them necessarily human) could strike fresh, beneficial pathways

Catch 22 strikes again.

Best wishes

Albert

Albert thanks for the contribution.

I am likely to sign off here. I absolutely do not want to wind the community up by being an outlier to the commonly trod pathways. I just want everyone to make the best choices for themselves, rather than for the institution.

David

I would love to answer this properly, but unapproved links are not allowed. Lets just leave it that some views are forward looking whilst others play for safety. Proton treatment for prostate cancer has been with us for many years and since 2000 there are many thousand successes.

I belong to a group where those treated with PBT (well over 15k now) share their overwhelmingly positive experiences, and learn about all the technological advances coming down the line  I draw my positivity about the treatment from that as well as my own limited experience.

The prime objective is surely that all patients get the best suitable treatment using the best available technology, and to get that, all involved need to approach the situation positively.

Crippo2

Hi Crippo2 ,

I agree totally with you that we want the best possible treatments.  Don’t get me wrong, I’m not against change, I just want evidence before the reasonably successful treatments are replaced.  I certainly support research to find best treatments and a cure.