KIDNEY CANCER - Photodynamic therapy (PDT)

Has anyone heard of or been offered the lcancer treatment involving PDT therapy?  I have done a bit of research on it here in UK. Its approved for cancer treatment in diffiuclt areas such as the head a neck / bronchi in UK and there are experimental trials re using it for pancreatic cancer.  So I asked NICE if they had recommended it for kidney cancer, their resposne was that no they had not but that did not mean it could not be used if the relevant authority (Oncologists) felt it should be. Anyway basically its got to involve a tumour you can get a probe to and its effective on tumours under about 1cm as the light can penetrate to that depth however in those cancers it has been used on it can kill the tumour altogether and has done so. So next time I got for my CT I am going to ask about this and therefore if anyone has experience of it could they let me know as I could use that in my discussions. I got for my CT on 29/1/09.

Cheers

Railwayman 

I read on their website it only tackles primary tumours - not sure why, they didn't explain. It's a fascinating prospect though, I agree, and seems very non-invasive. I hope you find out more that is to your good.

Julie

Hi Julie thanks for the response, they are not saying to me its viable in only primaries, they are quite clearly saying its viable according to density/size of the tumour. I also e mailed NICE, they responded to say that whilst it has been recommended/approved for use in those cancers I referred to that that was not to say it could not be used on other cancers if the relevant PCT felt it appropriate - postcode lottery?

Anyway I will keep you posted, the bottom line is we have to be more creative with treatment of MRCC in my view - just playing a waiting game gets us no where really as we trundle along towards the inevitable drug inefficacy unless of course something interrupts the flow!

Railwayman  

Well, that's definitely good news - as I say, I don't know why the UK site on PDT says it's only for primaries, they don't explain why. Maybe it's a question of size and accessibility of the tumour, and because each tumour has to be individually treated, and if there are a lot of mets, that's not possible??

I quite agree with you about 'being inventive' - in the end, whatever works, go for it. It may take a large variety of approaches, some even veering in to the 'lunatic fringe' such as high dose Vit C - but hell, if it works, and doesn't stop something 'orthodox' working, go for it!

I think there is far too much 'parochialism' still in oncology, with, say, surgeons #only believing# in physical removal, oncologists only believing in drugs, etc etc. One of the worst, I think, is the radiation question - from what I can gather those who 'believe' in whole brain radiation dfon't believe in stereotactic, and vice versa. To me, who the hell cares what works so long as it does!

All the very best, especially with getting the funding.....(tsk, tsk for asking for NHS money when you know perfectly well you are supposed to go home and die quietly and let Gordon take your family for inheritance tax......) Julie 

Size and accessibility is an issue but if the probe can get to the tumour then its an option and there has been a lot of questions asked about why this very viable a useful option is  not being utilised by the NHS

Railwayman

I see cyberknife is now availale at Harley Street Clinic - see harleystreetclinic.com or phone 020 7935 7700 - and there is talk of it perhaps becoming a front line treatment for cancer in areas even near vital organs where conventional surgery is not possible. Its targetted and gives a higher does direct to the tumour and can kill cells. BUPA is an option and also private (but you can get it in Turkey at equally as  good a hospital for less) sop I have e mailed about an appointment when I am down for my next CT scan at the end of the month and will let you know what they say.

Railwayman