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So who's had HIFU?

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User
Posted 04 Apr 2016 at 12:59

Hi Folks,

 

Well, I got my referral to Harlow for HIFU consultation, and it's on Wednesday. My Brachy consultation is at Addenbrookes on Monday next.

I will then have seen all 3 specialists - those 2, and the RP surgeon. Decision will then have to be thought about.

Just a reminder: Age just 56, PSA 13, Gleason 3+4, 20% tumour in one side only, contained. P.I.N in the other side but no PCa found.

 

HIFU sounds very tempting, but it's what happens in a few years' time...that's my fear, as I am sure it is with us all. RP will probably solve it; other options MAY not.

 

Gosh!

 

David

User
Posted 04 Apr 2016 at 23:04

Hi,

HIFU is more usually given as a salvage treatment but is increasingly being used as a primary treatment also. It is good that a surgeon is very positive about it but in some cases it has to be done again. ( I remember one of the members of the much missed Barry Topgun's local group had to have it repeated). HIFU results are optimised if the cancer is prostate confined and on one side only.

I only had HIFU as a salvage treatment but with no discernible side effects to date, (some 9 months post op).

Barry
User
Posted 30 Apr 2016 at 17:08

Hi,

Just thought I would share my experience for those considering HIFU:-

I had HIFU at 'Essex Urology' (before it was available on NHS at Harlow) in October 2013, due to a PSA of 3.6 which prompted a T3 MRI scan and a Template guided biopsy. These 'specialised' private diagnostics resulted in the discovery of a small amount of Gleason 3+3 cancer in the left side, which the HIFU supposedly removed.

I've had PSA tests every 3 months since, none of which were below 2! In February this year, my PSA jumped to 4.86 from the 2.6 it was three months earlier. I was then recommended to have a 'Focal Template Biopsy' which revealed that half of my remaining prostate is now infected with Gleason 4+4 cancer!!! Being a self pay patient, I was told to transfer back to the NHS for surgery or radiotherapy as further HIFU treatment was not recommended and salvage would be too expensive. 

This all resulted in a total cost to me of over £17,000, a lot of pain, anguish and anticipation in that 2.5 years, only to find myself totally skint and in a far worse position than when I first started!

The claims of 'no incontinence' and 'no ED' with HIFU were certainly true, but utterly useless when it gives you such a false sense of security and puts you squarely back in the danger zone in less than 3 years after treatment!

Best of luck,

Gary

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User
Posted 04 Apr 2016 at 15:32

Hi Dave
we are also going to see someone about HIFU tomorrow. Though my OH has cancer on both sides (and top and bottom) and is scheduled for RLP in about 3 weeks, I still want to ensure, like you, that we have covered ALL options. We can compare notes!
Good luck
B

User
Posted 04 Apr 2016 at 15:41

Yes - let me know what is said.....where are you seeing someone? What's OH?  I must be thick, but don't know!

User
Posted 04 Apr 2016 at 15:44

Durr...other half...sorry!

User
Posted 04 Apr 2016 at 15:45

OH=other half! You're not thick! It's just short-hand :-)
We are seeing someone in Harley Street
B

User
Posted 04 Apr 2016 at 16:15
Hello. I expect you'll see the same chap as us at Addenbrookes. When asked what happens if it he prostate cancer returns he said it won't! Be interesting if he says the same to you. Once we made a decision to have brachy it was only a week or so to wait. Though as it was December we waited a few more till after Christmas. My OH was 57 when he had brachy. Only 3+3 Gleason though. Good luck.
User
Posted 04 Apr 2016 at 23:04

Hi,

HIFU is more usually given as a salvage treatment but is increasingly being used as a primary treatment also. It is good that a surgeon is very positive about it but in some cases it has to be done again. ( I remember one of the members of the much missed Barry Topgun's local group had to have it repeated). HIFU results are optimised if the cancer is prostate confined and on one side only.

I only had HIFU as a salvage treatment but with no discernible side effects to date, (some 9 months post op).

Barry
User
Posted 08 Apr 2016 at 23:06

Similar to me ..... considered brachy?

dl

 

Originally Posted by: Online Community Member

Hi Folks,

 

Well, I got my referral to Harlow for HIFU consultation, and it's on Wednesday. My Brachy consultation is at Addenbrookes on Monday next.

I will then have seen all 3 specialists - those 2, and the RP surgeon. Decision will then have to be thought about.

Just a reminder: Age just 56, PSA 13, Gleason 3+4, 20% tumour in one side only, contained. P.I.N in the other side but no PCa found.

 

HIFU sounds very tempting, but it's what happens in a few years' time...that's my fear, as I am sure it is with us all. RP will probably solve it; other options MAY not.

 

Gosh!

 

David

User
Posted 10 Apr 2016 at 22:24

Hi again, David.
We were interested in HIFU but it turned out not to be suitable because my 4+3 was too close to the edge.
The surgery is not a guarantee any more than HIFU is, really. You will still need PSAs repeatedly to see what's happened.
The HIFU does offer lower likelihood of ED and Incontinence, which are inevitable after the op. ( following which it is a matter of if they return and - if so - when). Of course you can get both those effects from HIFU.
I am generally pro less rather than more treatment in the absence of actual symptoms.
Good luck with your decision!
Henry

User
Posted 30 Apr 2016 at 17:08

Hi,

Just thought I would share my experience for those considering HIFU:-

I had HIFU at 'Essex Urology' (before it was available on NHS at Harlow) in October 2013, due to a PSA of 3.6 which prompted a T3 MRI scan and a Template guided biopsy. These 'specialised' private diagnostics resulted in the discovery of a small amount of Gleason 3+3 cancer in the left side, which the HIFU supposedly removed.

I've had PSA tests every 3 months since, none of which were below 2! In February this year, my PSA jumped to 4.86 from the 2.6 it was three months earlier. I was then recommended to have a 'Focal Template Biopsy' which revealed that half of my remaining prostate is now infected with Gleason 4+4 cancer!!! Being a self pay patient, I was told to transfer back to the NHS for surgery or radiotherapy as further HIFU treatment was not recommended and salvage would be too expensive. 

This all resulted in a total cost to me of over £17,000, a lot of pain, anguish and anticipation in that 2.5 years, only to find myself totally skint and in a far worse position than when I first started!

The claims of 'no incontinence' and 'no ED' with HIFU were certainly true, but utterly useless when it gives you such a false sense of security and puts you squarely back in the danger zone in less than 3 years after treatment!

Best of luck,

Gary

User
Posted 01 May 2016 at 02:45

Hi Gary,

I think you need to be optimistic when undergoing any treatment but at the same time accept that there is no certainty that any one treatment will end PCa for you. I was like you in a sense. After much research, I decided to have my RT in Germany in 2008 where in addition to providing IMRT, it also included hadron particle therapy (carbon ions). Furthermore, I received more Gys than would be given in the UK. This was within a study. For a couple of years my PSA remained very low but then gradually began to rise slowly at each test. It transpired that the cancer had regrown on one side and lasy year I had HIFU as a salvage treatment, again within a study - minimal cost and well monitored. None of any of this treatment was painful and I am not sorry I gave myself the opportunity to try it. Will it eradicate the cancer, only time will tell? As with any treatment, you cannot reasonably say it is useless because it did not work for you. Had it worked for you no doubt you would have considered it money well spent. Long term results for HIFU remain to be assessed but for suitable candidates short to medium results are comperable with other treatments.

I hope you will be able to find treatment that will work long term for you.

Barry
 
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