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Your experiences of HIFU?

User
Posted 18 Jun 2015 at 12:21

Hi all,

I am a 44 year old British male, diagnosed in April 2014 with localised prostate cancer gleason 3+3 in three areas of my prostate  For the past year I have been on active surveillance with quarterly PSA tests (typically 3.2 to 4.2) and MRI scans. I am otherwise fit, healthy and normal weight.

I had a 2nd biopsy done a few weeks back which found a small amount of gleason 3+4 (3% of the total) so after discussions with my consultant I'm having HIFU treatment at the end of June.

Does anyone else have experience of this treatment?  I am particulalrly interested in how you felt after the treatment and what the first week or so following treatment ws like - especially having a catheter in post-op.  I'm also very keen to hear from anyone who had the treatement a while back and how your quality fo life is now and whether there has been any recurrence?

Finally for those of you who are not familiar with HIFU check it out. It's a less aggressive form of treatement than RP, brachytherapy or radiotherapy, with fewer side effects.  I wasn't aware of it until a few weeks ago.

Thanks, Steve.

User
Posted 20 Jun 2015 at 01:02

Hi Steve,

See you have not had any replies to your post but this may be because HIFU is not a widely used therapy in the UK. NICE were not recommending it for a number of years other than in trials or as a salvage treatment so not many have had this treatment in the UK and it is still regarded as experimental. We have had men on the forum who have had it but members sometimes leave, particularly if there treatment of whatever kind seems to have been successful.

I did consider HIFU in late 2007 when I was first diagnosed. This was before NICE blew cold on it. I asked my oncologist at the Marsden about it and he said - and I still have his letter - that he thought the side effects were worse than IMRT without proving more effective and there was a lack of long term outcomes. He said the Marsden regarded it as a salvage treatment but nevertheless would refer me to the leading HIFU man if I wished. Also, in my case I was diagnosed as a T3A so the the cancer was in the process of escaping the capsule so IMRT had a better chance of reaching all the cancer. I therefore opted for IMRT as the main component of my treatment.

Well fast forward to November 2014 and a preliminary scan showed I had a new tumour in my prostate and the Marsden agreed to refer me to UCLH for HIFU. I have been told unofficially that my Gleason is 3+4, with the cancer only found in one area of the Prostate. Bone scan is clear. The thinking is that I will be offered AS or HIFU. The MDT were due to discuss my case on Monday last so I await confirmation. As a proactive person I will opt for HIFU which like other treatment has become more refined since I looked into it back in 2007. I am also very interested in how men respond to HIFU and the side effects they experience. My concern is that debris can sometimes plug the flow on one or more occasions necessitating medical help which would restrict my movement. There is a small risk of a stricture and the need for a further operation. There is also a small risk of incontinence but much less than Postatectomy which after RT poses a challenge to surgeons and further increases the risk of incontinence. HIFU can in need be repeated which is a plus. It is not clear whether your cancer though in 3 parts of the Prostate is all on one side as mine is. It is thought that better outcomes result if only one side has to be treated.

Very interested in your experience as you will be having your HIFU before me.

Barry
User
Posted 20 Jun 2015 at 10:27

I was on the list to have this treatment, had scans etc ,waited months for the appointment with the consultant at UCHL only to be told sorry we cant do you as the cancer is too close the the sphincter muscle, there is a high risk that I could be made inconitent, so I had RP instead

so I guess my advice is be prepared and have a plan B....but good luck

User
Posted 28 Jun 2015 at 17:36

Thank you both for your replies.  

 

I am in to hospital tomorrow so will let you know later this week how I got on.

 

Regards, Steve.

User
Posted 28 Jun 2015 at 23:58

Hope all goes well Steve. Look forward to reading your progress reports.

Barry
User
Posted 03 Jul 2015 at 09:39

Hi Barry,

Here's my update. I had HIFU treatment four days ago and have to say it went well.  About 30% of the prostate with 3+4 Gleason score was treated.  A very small separate area of 3+3 was left untreated as consultant was not concerned about its growth and said any treatment is a trade off between pros (clearing cancer) and cons (potential incontinence and ED).  

I went into hospital and prior to op I was given an enema to clear my bowels (not painful, just a bit unpleasant) then down to surgery, general anaesthetic and about 90 minute op.  Catheter fitted during the op, then back to the room and an overnight stay. I was given oral morphine for the discomfort which wasn't too bad at all and managed some decent sleep.  I was discharged the next day with painkillers and antibiotics. I then spent next two days recovering at home with the catheter in.  To be honest the catheter was the bit I was most concerned about but it wasn't at all bad really.  You have the tube coming out of the end of you penis with a tap on it and went you need to pee, you just turn the tap on (without using your muscles) and it empties your bladder. I was able during those two days to eat and drink normally and sleep ok.  I did nothing energetic, literally just sitting on the sofa watching the tennis which was a bonus!

Catheter was removed yesterday back at hosptial (so only 72 hours of needing it) and that was a bit unpleasant.  It only takes 5-10 seconds to remove it but it's quite a sharp pain.  I then had to show nurses I could pee normally which I did 3 times and was then allowed to go home a couple of hours later.

So here I am on Friday after the op on Monday.  Walking around as normal, no noticeable side effects except a little bit of soreness when peeing.  Urine is clear with no blood.  Certainly no pain in the rectum where they put the probe in to do the HIFU.  No incontinence or dripping either.  Hard to say on erectile dysfunction yet but it doesn't feel as if it's going to be an issue.  All in all I feel about 90% back to normal already.  Next step is MRI scan on Monday to check on the success of the op.  

Obviously I have no other treatment to compare it with but I'd recommend it.  Minimally invasive, not really painful, no obvious side effects, recovering really quickly.  If any other men are reading this I would seriously consider it as an alternative to prostate removal, radiotherapy, brachytherapy etc.  The success rate is same as other treatments and with fewer side effects it seems an obvious choice.  Definitely look up HIFU treatment.

I'll post again when I get the MRI results.  Looking back on the whole experience it was fine.  I'd recommend it to anyone who is a suitable candidate.

All the best, Steve.

User
Posted 03 Jul 2015 at 12:48

Hi Steve,

Thank you for your detailed update which is a very interesting as we don't get much posted on HIFU experience. Pleased for you that it has gone well, at least so far. My HIFU is scheduled for the end of this month and my concern is about the possibility of incontinence and potential plugging of the urine flow due to debris which can arise for a few weeks after the procedure.

It would be interesting to receive a further progress report in due course.

Barry
User
Posted 03 Jul 2015 at 15:04

Good luck Barry.  I'll update you next week.  Certainly no experiences from me with debris or blockages.  The water works are function normally!  

Steve. 

User
Posted 05 Jul 2015 at 11:09

Hi Ken, we don't have many rules on here but naming doctors or nurses is a big no-no. Best amend your post before the moderators come along and do it for you. Most of us would put "seeing Mr D" or something like that

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Jul 2015 at 16:39

Cheers new at this as you can probably guess

 
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