HIFU Focal Therapy

Hi Robin,

HI Robin, and Frankie (who was also interested, and very helpful). 

I had a call on Saturday from Marc Laniado (I can't put a link on here but you could Google him, he gets good reviews).  He has completed about 150 HIFU operations he says, in London.  The call lasted about 30mins and I had a big list of questions ready.  I can send these if you're interested.

I was very impressed with Mr Laniado and did not feel like it was the sales pitch, more a professional assessment.  He initially asked a few questions.  Like you I've been swinging to and fro on what to do, however I have reached a conclusion and that is HIFU, if I qualify (he said it was likely but he will confirm soon).

The upshot is that he did not have my MRI results to-hand, is expecting these from my hospital this week, is discussing my case on Thursday with his colleagues after which he'll get back to me.  I mentioned that it was difficult to get stats on longer term survivors, and also wanted to know whether the technology had improved over the years, which he confirmed was the case.  The stats are impressive, but ultimately it depends on luck.  Don't we know it.

I am leaning towards HIFU as it is the least invasive, and the side effects seem much reduced.  This is important as I have a small business with my son and do not wish to be off work for long.  I am 66 but keep fit and extremely keen to keep it going.  Later on, should there be a repeat (or a new cancer) I can still fall back on HIFU if localised, and subsequently, other treatments.  Also, I have confidence in the surgeon and this I think was pivotal in my decision to-date.

I must stress that each individual is different, and you'll have seen the many varied views above.  The nurses from the various sites stress that you should listen to your doctors and would not make any recommendation on the types of treatments available, which of course is understandable.  

I am continuing to go through the motions and will still see the NHS urologist tomorrow, and the oncologist on Monday (fortunately I have private health cover through my business).   I don't want to have a reached pre-conceived conclusion, and will be asking the specialists why I should adopt their treatments rather than HIFU. 

I have gathered a great deal of information on the subject, including very helpful comments on this site (much more so than other cancer community websites), and the experience of Saturday's conversation and review of the surgeon thereafter has only served to confirm my thoughts that HIFU, if possible, is the way forward for me.  I'm keen to get something done now, asap, but I suppose that's natural.

Then again, by this time next week I may have changed my mind, but somehow I don't think so.

I wish you all the best.  Let's keep in touch, I'm interested to hear how you get on (and Frankie, thank you so much for your comments).

Kind regards

Kenny

Hi Kenny

Many thanks for the reply. Very useful and yes I would be interested in your list of questions, if you could PM them over or perhaps it would be easier if I PM'd my email address.

Let me share where my head is.  I have met the surgeon, but as the diagnosis of PC was sprung on me at the meeting I was unprepared, so need to request another meeting. I am meeting the oncologist next Wednesday and spoke to the HIFU salesman last night.  

I would love for HIFU to be the solution, but at a 4+3 assessment my gut feeling is that my cancer albeit contained is more aggressive than yours, so my decision will be very pivotal on what the oncologist says.  I  will then probably get a consultation with a HIFU consultant (at £250 another professional opinion is IMO well worth it). 

If after these discussions I do need a more 'permanent' solution, then at the moment, I think surgery will be the first choice due to the better % of outcomes, less potential rectal damage and the fact that surgery after radiotherapy looks a poor choice.  No doubt, this decision making process will change!

My father was diagnosed with PC at a similar age to me, he underwent radiotherapy but never  complained of any problems and appeared to carry on quite normal. My only regret is that I never asked!  It did however  resolve the PC as he died aged 96.

I think one of my big issues at the moment is that I really have not faced up to the diagnosis, still acting like an 18 year old. Of course a positive attitude is essential and I just hope I can maintain it. 

Please do keep in touch with every decision made and I will do likewise. I'll also PM my email over.

Wishing you and everyone else effected by PC a massive dose of luck and you will all be in my prayers.

All the very best 

Robin

P.S. Working with your son must be great and with what you have said, combined with your diagnosis, I would be taking the HIFU route.

For some reason I cannot get the PM to go. Could you PM me? Thanks

Hi Robin, Thanks for your email.   I could not get PM to work either and can't give you my email here.  From the raft of alternative approaches, if HIFU is a non-starter (I certainly hope not) I will unless persuaded otherwise go for robotic surgery.  My cancer is close to the nerves, it was explained as being at 4:00pm when the nerves are at 5:00pm.  I was going to say was that before the clocks changed, but probably not constructive!  I agree, it's hard to take it all in.  But it is imperative to deal with it and not to look back with regret on a poor decision / outcome.  It is as yet uncertain that I've got off relatively lightly, as it seems the NHS only did a spot check on the right  side of the prostate.  At the moment, I'm looking at the best case scenario.  Here are the list of questions - nothing scientific by the way:

1. Am I T2?
2. What was my PSA and escalation?
3. Would you be the surgeon?
4. How many operations have you done?  And for how long?
5. Is the cancer near the nerves?
6. And on one side only?
7. How would you propose to burn the cancer?
8. The studies seem dated - is there something more recent and looking at more than 5 years results?
9. If so how do these compare with radiotherapy and robotic surgery?
10. Has the HIFU technology improved and with it the success rate ?
11. If the cancer comes back, what are the risks that the cancer will mestasise before treatment?
12. Where would the operation occur?  London?
13. Can I / should I stay overnight?
14. When?
15. How long would I be off work?
16. Next steps?

Yes let's keep in touch.  Next up is the urologist tomorrow, I'll drop you a line.  Best wishes, Kenny

Thanks Kenny and good luck from tomorrow.  The clock reference did make me laugh.

Regarding the spot check, I did think the number of biopsies taken for you was low compared to my 19 (4 of which were bad).  I guess it depends what they see on the MRI, but I just thought I would mention it so that you can ask further questions

Thanks Robin I'll ask about the biopsies tomorrow.  cheers, Kenny

Benny & Robin, I think you have to be "Friends" on this forum to be able to send a PM. Try clicking on one or others profile and send a friend request.

Good luck with your journies.

Thanks Seamus. Yes we are 'Friends' but still didn't work. Happily now working!

Just read your Journey Seamus. Thank you so much for documenting it, full of good information.  Hope you are still doing well.