HIFU (High Intensity Focused Ultrasound) Experience

Thank you (Tedstar) 

This thread will be a very useful resource for future questions on HIFU treatment.

Best wishes - Brian.

Hi Tedstar,

Brilliant post. So informative.

L

Thank you for posting this, Tedstar; this is interesting news and may, just possibly, be an 'interim answer' to my own situation.  My position is very similar to yours, with the same Gleason score; the major difference being that I am 15 years older than you. 

I think this HIFU is an avenue I ought to explore because my own experience with 'Prostap' (a chemical injection which - as I understand it - stops the growth of the cancer for a while by preventing the prostate from making testosterone upon which the cancer feeds.  The uncomfortable but not-as-bad-as-I-feared perineal biopsy showed a strong but "contained" evidence of cancer on one side of the prostate only, but the answer seems to be remove the whole thing.  It is only through the experience of the Prostap that I have learned how much the body needs its testosterone to function normally, experiencing effects which - in my case, anyway - appear to have the effect that, putting it simply, 'That all my get-up-and-go has got up and gone'...   I'm sleeping much more fitfully than previously, my strength and energy had reduced by about 25%-40% (I lift weights and both the keeness to do so and the ability have dropped dramatically this last 6 months since taking it), so any 'path' which enables me to retain some prostate function for a few years more is something I'm very keen to pursue.  This may, perhaps, be an avenue I can take myself.  Thanks again !

Hi Pareidolia

Sorry to hear about your lack of energy and strength. I did read that testosterone is required for the cancer to grow and that's why hormone therapies and even orchidectomy is an option.

My understanding is that HIFU can be a very effective treatment with only a 5% increased chance of recurrence. Even if it comes back, HIFU or other focal treatment could be a secondary/salvage treatment, or a radical prostatectomy, if needed. If you have localised peripheral cancer then it is worth investigating.

Good luck and I hope you manage to find the best pathway.

My husband is having this treatment at Charing Cross in London through Imperial College. He had an initial nurse telephone conversation without me. I will be there on the day. He's told me about the nurse conversation, but I really feel unprepared for how to support him. As someone who has had the treatment, do you have any advice. 

The HIFU procedure was straightforward and painless. I was in and out the same day. The most uncomfortable part for me was the two weeks after treatment with the catheter in. Mobility is a bit limited with the bag. The sense of urgency (needing to pee) was frequent and emptying the night bag caused me some bladder spasms which were painful at times but the best advice is to relax as much as possible. After the catheter was out it did take three months to feel like things had settled and healed. Just being on hand as much as possible to help with the catheter will be a great support for him. I hope it goes well for you both. 

Do let me know if there’s anything specific you want advice on. Good luck.

Thanks.  I'm glad it has settled for you. It also helpful to know it took a while to feel normal. We were thinking about travelling in January, but waiting until February might be better.

Hi, I think delaying travelling might be a good idea. It certainly took many weeks to feel there was improvement. It is a slow process. I was back to work after 2 weeks but was needing extra toilet access for another month or so. Good luck. I hope it all goes well.