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so confused need guidance please

Posted 28 Jun 2018 at 01:59

Hello other prostate people , Hi my name is Nils  I live in Australia  first week in May I was diagnosed with a Gleeson 7 prostrate cancer   being a 3 plus 4 , my PSI was a 5.97   anyway after  the biopsy test and the subsequent PET scan  they said I need to have my entire prostrate removed. I did get a second opinion from another oncologist  who said the same thing. IT appears that if I do that  I will 80 % plus loose erectile function and have incontinence issues   so I started looking at  alternatives and research has lead me to the proton therapy clinic in Prague.. after a few days they responded last night confirming that I am a suitable candidate for the treatment. which is fantastic.  If anyone has had this done or is about to please talk to me, I really want some feedback on this   as I also have some questions that I cannot seem to find answers on. love to hear from you  Regards Nils  

Posted 28 Jun 2018 at 07:05

Hi Nils,

I think the reason that proton beam, Nano Knife and other new-fangled treatments for PCa are not customarily used is because medics in general regard them as “unproven”.

However, if you are totally against radical prostatectomy and are prepared to pay, you might consider Nano Knife (a similar operation to template biopsy), available in London at the Princess Grace Hospital @ £20,000 or Offenbach, Germany @ €16,000. There is a very good chance of success with a small localised tumour with minimal side effects. Moreover, that procedure does not preclude other subsequent ones if not a total success.

I had a Retzius sparing robotic laparoscopic prostatectomy three weeks ago and have no continence problem at all, but they don’t tell you your dick might shrink by up to two inches! Allegedly, most of the length is supposed to return after a year, and potentially erectile function as well. No sign of any of that yet though, so we live in hope!

Best of luck whichever path you choose.

Cheers, John


Edited by member 28 Jun 2018 at 07:30  | Reason: Not specified

Posted 28 Jun 2018 at 11:32

Hi Nils,

Actually, Proton Beam is not a new fangled treatment for treating cancer. The first patient was treated in 1954 and it really took off in the US in 1990 at Loma Linda. Since then many facilities have opened in the US where they have the greatest experience and in more recent years in other countries too where PCa has been one of the cancers treated. In the UK there is a low powered Proton Beam machine at Clatterbridge which was opened in 1989 but is only able to treat eyes. Two new high powered facilities are being built in the UK but it is very unlikely that these will be used for PCa as other cancers that benefit more are likely to be prioritised.

One of the major reasons why Proton Beam has not been adopted more widely is the high cost of providing a cycletron and the small number of patients it can treat compared to having many linacs for the money being able to treat many more people. Prague is a far less expensive centre than going to the US. In theory Proton Beam for PCa should provide more effective treatment with less side effects but in practice, it has not shown the very considerable benefits over photon radiation that have applied to some other cancers according to some reports

There are other treatments such as Nanoknife (Irreversable electroporation) as John has mentiond as well as HIFU, Cryotherapy and FLA for suitable patients if you research and are prepared to widen your investigation.

There is a very good Australian site which was started by the late Terry Hebert. It's called YANA, which stands for 'You Are Not Alone now'. It has mentors and members from all over the world and apart from other aspects gives a breakdown of treatments it's members have had. I recommend.

Edited by member 28 Jun 2018 at 11:39  | Reason: My spell checker isn't working

Posted 28 Jun 2018 at 13:05

I read somewhere that the Oz government give grants of up to AUD $250,000 to citizens for medical treatment overseas if that procedure is not available in Australia.

Is such a grant available in your case?

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