I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Proton Beam Treatment in Prague

User
Posted 28 October 2017 12:15:26(UTC)

Hi

I was diagnosed in Jan 2017 and have been trying to get funding from the NHS for Proton Beam treatment in Prague. Unfortunately the NHS showed no interest in funding it even though it would save money over the Surgury and other treatments. I have tried other organisations seeking funding but as of today I have no luck there either. I finally put my house up for sale but with no takers yet I am being forced to go back to the NHS. Not sure if Prostate UK or Cancer UK part fund and feel a bit embarrassed asking. I have searched this site for Proton Beam treatment and get no hits.

When I first got the news about my cancer I visited a clinic in San Diego as I was there at the time and a friend of mine suggested I visit the clinic as I was only staying 5 minutes away. Proton Beam treatment is the number one method of treatment in the USA for Cancer in the Prostate. The price is high but the facilities are really amazing. I searched online and found the clinic in Prague and their prices for the same treatment are about a third of the USA prices. I also learnt that the NHS often send children to the USA instead of Prague preferring to pay higher prices for probably the same treatment.

I wondered if anyone on this forum had been to Prague and how they got on with their treatment.

Lastly when diagnosed my PSA was 12.5, my PSA is now 10. I put this down to taking Metformin 500mg twice a day. Not prescribed rather my own researched in the anti ageing field. Metformin helps control glucose levels in the body and have been mentioned as helping prevent most cancers in the body. To be fair Prostate cancer is not one of those it is supposed to help however a general controlling of glucose levels can only help.

Thanks

User
Posted 28 October 2017 13:45:37(UTC)

I think you have had some duff info. Proton beam therapy has not had good results as a primary treatment for prostate cancer although it is looking very effective as a salvage treatment when other primary treatments have failed. There will be NHS proton beam machines in 2018 but only for the cancers where international trial results have been good (eye cancers, some child brain tumours, etc)

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


User
Posted 28 October 2017 13:54:15(UTC)

PS you are playing with fire taking metformin without a prescription. While some trials are looking at whether metformin can slow down prostate cancer, there is also a large scale project in the USA looking at whether men on metformin are more likely to get high grade aggressive version. So be aware that there is no clear science on whether the metformin could be falsely lowering your PSA and therefore making it unreliable. Specialists might be wary of treating a man whose PSA result may be compromised.

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


User
Posted 28 October 2017 15:44:41(UTC)

Hi Trashman,

Welcome but sorry you join us due to your PCa diagnosis.

As regards Proton Beam Therapy, threads have been started on this several times and it has been brought up in threads on treatment generally. (I am not surprised you were unable to find anything on it here because the search facility on this site is hopeless being packed with a lot of irrelevant information and omitting relevant information contributed by members. A recent thread reiterated this unsatisfactory state). I looked into the possibility of having Proton Beam therapy in the USA following my diagnosis in 2007 and my second opinion who was an expert on radiation including particle therapy told me that all things considered it would cost of the order of £90.000 then so probably in excess of £100,000 in present day figures. However, I believe it is now possible to have fewer fractions of a higher dose Proton Beam in a similar way that hypofractionated IMRT is gradually being rolled out following trials in the UK and elsewhere. So fewer fractions over a shorter period could significantly reduce the cost but as you say for comparable treatment in Prague it would be a lot cheaper. As to the effectiveness of it, the aforementioned expert considered it marginally better than the Photon Beam for PCa, particularly as regards reduced side effects because the vast majority of the dose is deposited on the tumour (the so called 'Bragg Peak') and little before or after, unlike Photons which a cause significant damage on the way to and after the tumour. This is of even greater importance where cancer is in the head or neck and for this reason my second opinion secured funding for children especially to be treated in the USA but for PCa not a chance! The Prague facility does not have the experience of the USA hospitals although Ashya King ( you may recall his story), has apparently done well having been treated for head cancer there that was not available in the UK. Prague is certainly worth investigating if you decide on Proton Beam treatment and you are a suitable candidate - not every man is.  Insurance companies invariably pay the lowest amount they can for good treatment.  Proton Beam is considerably more expensive than IMRT.  Bearing this in mind, it must say something for Proton Beam therapy that American Insurers agree to pay for it extensively for PCa  over less expensive Photon radiation.

If you click on my Avatar you will see from my Profile/Bio that I had IMRT with Carbon Ion Boost in Germany. (Carbon Ions pack more punch than even Protons). My treatment was within a study and Heidelberg University Hospital bore the cost of the carbon Ion element (done at GSI Darmstadt, a forerunner to the hospital's own facility) and made a reduced charge for the IMRT. I did manage to get reimbursed with the cost of the latter but the funding was given on condition I didn't divulge the source and I am legally bound not to do so.

I know Heidelberg were evaluating Proton and Carbon Ion therapy as a boost to IMRT in trials which include Prostate, although I am not sure whether these are still underway. You could contact the hospital if interested through details on their website. However, I doubt you would be treated for PCa there with just Protons or Carbon Ions, the demand on the facility is so great that they have to turn some people away I'm told. https://www.youtube.com/watch?v=LeApaY7ctMo

PS.  There are other Proton Beam centres in Europe you could try, Munich has one for example.

 

 

Barry
User
Posted 28 October 2017 16:28:59(UTC)
Hi I don't know hardly anything about proton beam therapy other the thinking goes that it is better targeted and there is possibly less collateral damage? I did read an an article about a year ago I think( but can't remember where) about a UK man who went to Prague, paid £16000 and was very pleased. I suppose only time will tell
Whether the outcome is better than radiotherapy. Do they give hormone treatment at the same time with the proton beam therapy?
User
Posted 28 October 2017 19:23:07(UTC)

The reasoning is the same with Hadron Therapy of which Proton Beam is one example, as with Photon RT. The idea is for HT to shrink the tumour thereby reducing the treatment target to concentrate the beam.

Can't remember any of our members going to Prague for Proton Beam with PCa, although I read elsewhere of someone who went there for 'Cyberknife' radiation treatment for PCa. That was before Cyberknife became available at a few hospitals in the UK.

Barry
 
©2018 Prostate Cancer UK