HIFU Focal Therapy

Thanks for the update Kenny. 

So decisions made, surgeries booked and like you I just want to get it done.

I will certainly keep you posted. 

Hi Kenny

Just wanted to wish you good luck for Monday. I presume you will be spending the weekend in London, so take the opportunity to maybe do a bit of sightseeing, to take your mind of it. Having worked in London for most of my career, I can give you some recommendations if you want.

My mini TURP, took place on the 9th December and according to the Prof. was a complete success and so far recovery has been good.

I received great care at The Nuffield in Guildford but even though private, their staffing levels are under strain no doubt due to Covid. This results in the use of more agency staff who are not great for continuity of care.  All I would say is that as a patient, you need to take an active part in your care if you can.  For me this was post op, alerting them when the bags of saline that were washing through bladder/catheter either ran out or the run through was set at the wrong rate and on one occasion when the catheter was blocked by a clot. It was not a problem, but you just need to be the extra pair of eyes and question everything.

Let me know how you get on.  My next op for the seeds is 19th Feb.

Kind regards

Robin

Hi Robin,

Good to hear from you and I’m pleased things went well with the TURP.

Thank you for thinking of me, it’s appreciated.  

I’m on my own, I told my wife I would be fine.  She’s up to the nines as it is.  Our 3 kids (all adults) came up this morning to see me off, bearing gifts of aspirin & headphones!

I’m on the train to London now, almost there.  Hospital tomorrow for pre-op, then early Monday admission.

Fingers crossed it all goes to plan.  I’ll keep you posted, probably late next week.

I know London quite well, I travelled to see clients & head office very regularly, an age ago now though.

Thanks for your advice, I’ll bear that in mind, hadn’t thought of that.

Good luck in February.

Best wishes,

Kenny

My husband had HIFU, as a secondary treatment, in 2006. Our local health authority wouldn't pay for any more treatment so we paid for it privately. He was referred by his consultant to another consultant, who had a vested interest in HIFU. Unfortunately, because the recurred cancer was on the seminal vesicle, something that was known at the time, the treatment didn't work. Be very careful that you know HIFU will cure your cancer before going ahead with it. As far as I know, it will only work if the cancer is confined in the prostate. Get two opinions if you're not sure. Mar.

Thanks Marianne for your post, very helpful and sorry it didn't work for your husband.

All I know from my research is that HIFU sounds great, being less invasive, but the jury is still out. My cancer is confined to the prostate but was talked out of HIFU by one of the best consultants in the UK, who had previously offered/conducted HIFU but alongside Brachy the results were just not as good, so he stopped HIFU. So whilst HIFU clearly works, I was convinced it is just not as effective as Brachy.

I'm sorry to hear this.

One small point:

Unknown said:

Be very careful that you know HIFU will cure your cancer before going ahead with it.

HIFU doesn't cure ANY PCa. No-one has the right to claim a PCa 'cure' as the result of a five year trial - especially as active surveillance patients should all expect to be alive after 5 years, and 7% requiring "either a radical prostatectomy or radiotherapy within 5 years" is not much different to AS patients who have had no treatment at all.

All the research I've seen seems to be on men who would otherwise have remained on 'active surveillance': not one has matched subjects in order to compare outcomes, or even side effects - with either surgery or radiotherapy. Not one.

Hi Robin & Anyone interested in post-op situation 

Just an update on where I am just now.  I had the operation on 21/12, had hiccups for 24hours or coming to - thankfully these stopped as soon as they started.  A word of warning for anyone in similar course - when I became conscious after the op my back was killing me as I had been lying square on my back, ok for most I guess but anathema for me.  This was an old issue where I have weekly treatment from a biomechanic and 3 weekly osteopathic.  I should have made it clear to the nurses, my own fault.  Took quite a few days to get back to usual state of discomfort.  

I returned from the London Clinic to Scotland and then back on 4th Jan to have the catheter removed.  Unfortunately I contracted an infection - a problem of logistics I suppose given the distances, I could not easily visit the London hospital.  I was given the wrong antibiotics and the infection worsened to the extent that I was rushed into A&E in Edinburgh.  They put me on penicillin and my surgeon supplemented this with other medicine.  Anyway I have now recovered, working full-on and getting fitter / stronger all the time.  Out for a run this morning followed by gym (which I’ll pay for over the next few days!).

Issues at this stage:

1. Leakage continues but is getting better.  I use the smaller pads.  I am continuing with pelvic floor exercises.

2,  On a more personal issue, erections are back but are sore at the base and not that great.  Penis is a bit smaller but I’m not bothered about that.  I’m just pleased that something is happening down there!

I am going to ask the London Clinic for advice / treatment.

I feel enormously lucky to have found the London surgeon who was brilliant, empathetic as was his PAs.  I sent them a hamper with Scottish stuff, smoked salmon etc by way of thanks, they probably don’t get too much haggis sent by way of gratitude I suppose......!  

My next step is a PSA test which I’ll arrange with my GP soon.  Bit apprehensive but with no prostate now, well, should be ok.

I hope you are ok.  Please keep me posted, I emailed you but didn’t hear back.

Best wishes 

Kenny

Hi Kenny

Yes I did reply on the 20th Jan but must have got lost in the ether.  Anyway, glad to hear you are making progress and my reply I sent is below as it may help someone else.

Great to hear from you and glad you’re making progress, albeit with a few hiccups. Remember it is early days.

I went back to Guildford Urology Unit yesterday for a post op/pre op check.  I am pleased to say that the HT has reduced the prostate in size by 30% and that the gland remains very smooth, so hopefully no breakout and the cancer remains contained. Also had the histology back from the bit of prostate removed during the mini TURP – all OK, so that’s a relief and so far so good. Mind you the HT has been draining – tiredness, a bit of depression, irritable.  Exercise does help, but you end up sleeping more, but it is all a means to an end.

I have to say that having the mini TURP was a good decision as the improvement in urinary flow has been great – flow test showed an 80% improvement.  However, I am under no illusion that post Brachy, this will deteriorate, but hopefully will recover after 6 months.

So now my Brachy surgery will take place on the 19^th February. Hopefully it will not be postponed as Guildford have their own operating theatre in the Urology unit and is a ‘Green Zone’ away from the main hospital. They did say though that a lot of cancer surgery has been postponed, so you are very lucky to have private cover.

The surgery itself should be straightforward and the Prof. has fitted me in as an early op, so hopefully no overnight stay.  Guildford also has access to funding to use a protective gel (£3.5k per application) that is inserted around the prostate and dissolves into the body after 6 months, which hopefully will reduce any toxicity/side effects to the bowel & bladder.

Having said that, I am preparing myself for a 6 month recovery period.

I hope you continue to make good progress and do keep in touch.

Kind regards

Robin

Hi Robin

Thanks - I didn’t see your note.  Good luck with your brachytherapy operation and your recovery.  I’m sorry that you’ve had issues with the HT.  This was an aspect that added to my decision to go for radical surgery.  There’s no easy way unless you’re in the wait and see camp, which was not an option for me given the size of the cancer.  Yes I’ve been enormously lucky to have PMI cover through a client’s group scheme and also CIC, not huge but has been a silver lining.  Aviva were very helpful and paid out promptly.  Also very lucky in that the policy expires this month anyway.  I took it out 17 years ago to help with kids’ education if something happened to me.  Now, they’ve had something added to the funds to buy a property (1 from 3 has a flat (he gets a new shower room) and none are married).  Bank of Mum and Dad, the best bank in town.

I hope your operation proceeds on schedule and that you see through the marathon.  I’ve dealt with it by addressing And focusing on each part as it happens.  I hope I’m on the home run now, I don’t want to have doubts.  I’m moving on.

Best wishes and please keep in touch.   

Kenny

Quick update on the HT. 

About 6 months ago I was diagnosed with slightly high BP and was prescribed 10mg lercanidipine.  Well, I didn't take them preferring to try and make some lifestyle changes.  I  had some success, but with the HT this was derailed, however I still didn't take the medication, particularly as it can exacerbate the side effects of HT.

However 2 weeks away from my op, I decided I should take the lercanidipine. First day, sure enough it wiped me out, but now on day 3 I am feeling like normal, maybe a little tired but so much better.

Good luck with the recovery