HIFU or radiotherapy

Hi SumZaf,

Over the last year I can think of two members of the forum who have had HIFU recently, and I think there are a few more who have had it a few years ago. 

HIFU used to be rare on the NHS, but the topic is coming up on this forum more frequently as of late. I think that HIFU didn't have a long enough track record to be recommended by the NHS but that must have changed recently. 

If you had asked this question a few years ago the general consensus amongst members would have been that HIFU will probably knock the cancer out but it will probably recurr within a few years and another treatment will be required. 

I guess as the NHS are starting to recommend it, then it may be considered more reliable than previously. The effects of RT are not too troublesome for most, so I think you have a reasonable chance of living a happy life after whichever treatment you choose. 

How old are you? If you are in your 50s—60s you might be concerned about recurrence in the next 10years. If you're in your 80s then you will probably die of something else before the cancer recurrs, so HIFU with its lesser side effects might be a better choice.

Hopefully some others will chip in shortly. 

Thank you Barry and Dave for your responses. 

I am in my early 60's so long term side effects is something I would consider. I am being offered HIFU by my private healthcare plan however when I spoke to my NHS doctor about HIFU (who originally only offered me external beam radiotherapy) also then offered HIFU (with a longer waiting list). 

Barry as you have had both treatments, how would you compare both side effects on yourself? I understand everyone reacts differently but it's nice to hear from another person rather than facts. 

I have my full report of diagnosis, what other information would be useful to share?

I am getting the feeling from this thread that with HIFU there are higher chances of it returning, the nurses explained to be there only 5% more chance of it returning compared to radiotherapy. 

I have read the toolkit and shared it with my family, very useful. Thank you. 

Hi SZ,

Whilst I am happy to relate my own experiences, my initial treatment was with 30 fractions of IMRT each of 2gy plus a boost of 6 fractions of Carbon Ion each of 3gy, in a study in Germany; So more radiation and more intensive than you would get combined in the UK. (In fact this is so rare that my GP asked me to do a presentation on this to some students and also on HIFU). So my personal experience may be further removed from somebody having the 72 fractions each of 2gy or 20 fractions each of 3gy that seem to be what is generally administered in the UK nowadays as primary treatment for PCa. As the amount of radiation is increased it is more effective in dealing with the cancer but with greater chance of more intense side effects. Differences can be compounded by HT most men have before and during RT and how they relate to this element. The main downside for me was premature tiredness. The RT and particle treatment led to me having to get up to have a pee up to 8 times a night for a time although this gradually reduced to my pre treatment level of once or twice nightly by about 10 weeks post treatment. ED gradually increased and perhaps I should have done more to help stop atrophy at the time which might have delayed this. I also had mucus in my stools for about 6 months post treatment and sometimes 'wet farts', so some tissue and a spare pair of pants accompanied me. I also got a Coveen system for use when there was no convenient toilet when out while frequency and urgency was a problem. I think the RT added to my tiredness but not by much. I did get a sore bum for a time due to RT but this improved with Bepanthen cream being lightly dabbed on. I did force myself to take a long walk each day even if it was at funerial pace. Long term the RT + particle therapy hasn't produced any other significant side effects and I resumed playing short tennis and golf until I was 75 and competitive table tennis until 80 or so. Most men continue with HT for anything up to 3 years after RT but I have rejected this so far.

Unfortunately, another slow growing tumour started in my Prostate and in 2015, I had HIFU for this which knocked the cancer back but it is getting to the point where I might be recommended HIFU again and/or start HT. You might glean some information of my experience here, although it was done as a salvage treatment for failed RT rather than as a Primary Treatment. As it happens I have a consultation with UCLH next month to discuss my recent MRI. https://community.prostatecanceruk.org/posts/t10960-HIFU--my-experience

NB. I note some of the links I referred to in the above thread have since been pulled.

HIFU can be a good treatment for suitable men and a week or two after my procedure when swelling had gone down it was as though I hadn't even had it.  Covid travel restrictions probably prevent travelling to Germany  at present but if I was contemplating HIFU as a primary treatment for PCa I would investigate the possibility of having the latest type of HIFU.  This would be TULSA_PRO in Heidelberg, a place I know well. http://www.profoundmedical.com/wp-content/uploads/2015/05/Phase1ResultsPresentationFUS_London2015_pdf.pdf

Edited by member 11 Mar 2021 at 21:59  | Reason: to highlight link