HIFU Focal Therapy

Just as a note, HIFU isn't a place or organisation so when you say "HIFU states ..." what you mean is 'the provider I have spoken to who happens to offer HIFU states ..." As a provider of HIFU, they are likely to tell you how great it is while downplaying the alternatives!

Hi Benny

It’s a difficult time deciding on options and waiting for treatment in these Covid times I know I have just had primary HIFU at UCLH.

All the advice you’re had here is good and I will not repeat. 
But I can give you a actual example of the difference in side effects etc. of HIFU verses HT (hormone)& RT (radio) as my brother was also diagnosed 12 months ago also Gleason 3+4. He went for HT & RT, where as after researching it I went for a HIFU operation.

I can say that one month on I have almost forgotten it
I have virtually no after effects. I am on my bike again. No wee /bowel problems. 
Whereas my brother wishes he had gone my route . He struggled with the hot flushes etc of HT but his worst problems came with the bowel problems of RT.

My op was one day and a week with a catheter, he had months of treatment and months of discomfort.

UCLH do not expect me to have to return for another HIFU but it is possible as you know. And if all else fails I can still have HT/Rt but for me it is worth the risk. The main risk of course is not following up with check ups as at all costs to not let it get to your bones. (When the pain then is the same whether your old or young).

Bill

HIFU should probably be thought of as a delaying tactic rather than a curative treatment. Certainly it has many fewer side-effects than surgery or RT, but those are treatments which have good track records as curative fixes for prostate cancer, which HIFU does not.

Of course with a G6 diagnosis a delaying tactic might well be all that's required; "pure" G6 prostate cancer is vanishingly unlikely to kill you. The problem is, of course, that the biopsy is likely to have missed more aggressive cancer cells. HIFU plus regular PSA tests might well work for you, though, as long as you're aware that it may well need to be repeated or a more aggressive treatment option considered in the future.

Best wishes,

Chris

Cheers,

Chris

Hi, to everyone who has replied and offered such great insights.  I apologise for not answering sooner, I hadn't realised that you had responded. 

I had a call on Saturday from my prospective surgeon (Doctors name edited by moderator) (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 provide these if you're interested.

I was very impressed with (Doctors name edited by moderator) and did not feel like it was the sales pitch, more a professional assessment.  He initially asked a few questions.  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 comments above endorse the fact that there may be more sinister outcomes, I'm yet to discover.

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 tomorrow 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 understand that each individual case is different, with many varied views on treatments.  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 and understand that HIFU is available to me).  I don't want to have reached a 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 and others. 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, albeit I don't think so.

I wish everyone all the best, and thank you again for taking the time to respond, it's greatly appreciated and valuable to me.

I will update you as I progress.

Kind regards

Kenny

Edited by moderator 27 Oct 2020 at 19:28  | Reason: Doctors name mentioned

Hi Chris, thank you for your reply.  Yes I am concerned that only 12 biopsies were taken.  I hope I'm lucky, stay lucky!

Putting on a brave face to my immediate family, have not told friends, playing it down somewhat - especially to my 3 children - but the truth is I'm a bit stressed & have a knot in my stomach.

Thanks for your help & best wishes.

Kenny  

Thanks Simon.  I'm sorry to hear that your diagnosis was more severe than originally thought, but I hope you're doing well now.  Thanks for giving me the heads up that it may not be plain sailing.  I dare say I'll find out soon.

Best wishes,

Kenny

Thanks, that's very positive and the way I am approaching this illness.  I count myself lucky to have discovered PC relatively quickly, and due to a chance comment to my doctor.  Best wishes, Kenny 

Cheers for the kind words Kenny

I’m almost a year on now and pending quarterly PSA blood tests almost back to normal. Continence pretty much where it was pre surgery. Might have a drip if I force wind or have an exceptionally large sneeze without squeezing pelvic floor....mostly that second nature now. Nights are perfect and only get up once for a pee usually. Sex life as before...in fact in some respects better now as don’t need condoms or the pill. 

Pelvic discomfort when sitting on a hard chair all but resolved.

One of things to be mindful with Prostate Cancer is it tends to be multifocal. Sometimes small tumours can be missed with imaging/biopsy. 

Histology showed that in my case had I waited a few more months it’s likely it would have breached the prostate capsule although pre-surgery imaging and biopsy told a different story.

Good luck with whatever route you take. There are no guarantees with any path. My view was try and buy as much quality time as possible in the hope that if their is a reoccurrence that science and immunotherapy will have matured a little.

Please shout me anytime if you have any questions as very happy to help where I can.

simon

Edited by member 31 Oct 2020 at 17:31  | Reason: Not specified

We realised too late that the NHS in our area would not support J because he had the op privately so he had no access to a clinical nurse specialist, district nursing, etc., and we had to fight hard for referral to the NHS ED nurse.

It might be different in Scotland?

Hi LynEyre

Thank you for your comments, Chris you too.  I had not even thought about aftercare.

It's a minefield. I could write a long, boring and contradictory blog on the subject...  wait a minute....?!  

Probably conjecture but I came away from the NHS doctors (1st keyhole lap, 2nd radiotherapy) with the feeling that they were in competition - no doubt conjecture on my part.  However the consultations were recorded and I listened carefully afterwards.  The RT doctor couldn't get his CD player to work, I used my phone.  There were a couple of things that on reflection irked me, and the London doctor (Harley Street) was polite but quizzical on the NHS surgeon's HIFU comments, which he explained were quite erroneous.  The keyhole lap surgeon did say that if I were 50 he would strongly recommend a prostatectomy, if I was 75, HIFU but as I'm an ostensibly fit 66 year old, he said I was in the middle and good luck with the choice.

Apparently the London surgeon (described as a Top Doctor on the web) and his multidisciplinary team discussed my case last Thursday and arrived at what appears to be a more in-depth conclusion than was the case with the NHS.  Who knows, but I have much more confidence with the London doctor and his team.  Ultimately it will boil down to luck but I am trying to make a judgment that I won't regret later. 

Update: Aviva has now responded - the lady has been immensely helpful I must say, but unfortunately there is likely to be a large shortfall (maybe £10k+ and I don't know about aftercare).  She has suggested another surgeon and hospital who are covered and I'll start the process again.  Before emailing me, Aviva kindly checked with the 'new' surgeon's secretary and I can still be scheduled for December.  I'm very keen to move forward quickly although it's clear that the cancer has been there for years - again, sheer luck that through a chance remark to my GP that it came to light.

I also have an old critical illness cover policy which expires next February, after 17 years.  Maybe this will be successful, I'll believe it when I see it but in any case I am lucky to have PMI through a client's group scheme (I'm a consultant - a very old one). 

Onwards and upwards!

Best wishes,

Kenny 

Hi Simon

Thanks - that's great advice.  I am calling the new alternative today to get things going.  The operation would be at the Royal Marsden Hospital in Fulham London.

I'll keep you posted & good luck with everything.

kind regards

Kenny

Thanks Simon, that's reassuring.  I've been mulling over this morning if I was maybe making a mistake in going for the Royal Marsden over Princess Grace (although I know much depends on the surgeon).  Today I'll try to get the process started.

Best wishes,

Kenny

Yes, surgeon skills very key. High volume and good stats are the things to look for. My surgeon was doing 3x the ops as many others with great stats. Obviously like every case they are not always great outcomes. If I’d have left things another few months I would have certainly been in a different place irrespective of who was doing the work.

I started my HT at the Royal Marsden (Sutton), in 2007 within the NHS but had my RT in Germany in 2008 in a trial. The Marsden were a bit miffed but subsequently took me back under their wing as a NHS patient and referred me to UCLH for HIFU in 2014, also as a NHS patient. So I didn't have a problem reverting to the NHS, although some did I understand.