HIFU advise/experiences

Hi Wayne, I'm a bit surprised some of the regulars haven't replied to you yet. Welcome to our club.

Can you post your psa and if you know how many cores were positive at biopsy, it will help people here to guess how aggressive your cancer is.

I've not had HIFU, so I'll leave it to more experienced people to comment. As far as I know it is not available in many places in the UK, but I'm sure a member here will point you to a hospital which does it. 

Edited by member 08 Jun 2020 at 21:15  | Reason: Grammar

Hi Wayne,

Comparatively few men in the UK have had HIFU rather than the more usual surgery or variations of RT. Furthermore, of those that did have HIFU, the vast majority had it as salvage therapy for failed Radiotherapy or occasionally as with Clare's husband for another failed focal therapy. So it just may be that nobody on this forum has had this niche treatment as a primary one. HIFU works best where there is a rather small tumour on only one side of the Prostate. The procedure can be repeated if necessary or be followed by other forms of treatment.

HIFU as a primary treatment is is usually done as a private treatment. Generally, the patient is anesthetized for the procedure , although occasionally it is done using an epidural. Most men find a couple of hours or so afterwards they can walk away or be driven home. Side effects are also generally less than with Prostatectomy or RT. It seems likely that HIFU is not quite so successful as the usual alternatives and long term data has yet to be assessed.

There is more detail on the HIFI I had as salvage treatment for failed RT here :- https://community.prostatecanceruk.org/posts/t10960-HIFU--my-experience#post133611

Edited by member 09 Jun 2020 at 02:56  | Reason: to highlight link

Hello Clare,

Thanks for sharing your husbands experience with me regarding HIFU.

His story has summed up my hopes and fears at the same time. Keeping all pre-op functionality is high on my agenda so I take the positives on that front from your husbands treatments. My concern is that I haven't read anything about peoples experiences with HIFU that didn't result in a second treatment. In most cases this seems to be a couple of years after the first one. The big question, I guess, is can I live with the chance (or likelihood) that HIFU may not be the cure but a prolonging of the inevitable ie that cancer returns and I am back at the same crossroads with a decision to make.

I hope your husbands recent treatment has done the trick!

Wayne

If you go for it, just keep in mind that it may need to be repeated in the future.

Hi Wayne,

Like you I was REALLY worried about QOL and I was more concerned about that in the early days than getting treatment. But having been on AS I went for a nerve sparing prostectomy in March 2020 when I got to T2a and tumour was 4mm. Everyone is differerent but in all honesty 10 weeks on from the operation I don't feel like QOL is going to be impacted for me in any material way. Incontinence was never much of an issue but is now only the odd leak when I sneeze or something and even that is going. ED for me requires some cialis at least for now but is manageable and again improving. None us know for sure whether further treatment may be required down the road but I felt it gave me the best chance of putting it behind me. My consultant wasn't very keen on the HIFU route but talk to 10 different people and you get 10 differenet views.  Good luck in whatever route you choose

Hi Wayne,

I'm 57 but very fit - lots of cycling/running/hiking

Gleason was 3 + 4 

When I had my biopsy (September 2017) there were 12 cores. 10 clear but 2 on the left were positive (less than 5%)

First 2 MRI's no visible tumour and graded T1a ( Aug 17 and September 18)

Feel free to ask any other questions. A friend of mine was a bit ahead of me in terms of treatment and I found it very reassuring to know what to expect ( although no 2 experiences are exactly the same)