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IRE

User
Posted 17 Jan 2022 at 22:30

My suggestion is you look at IRE as an option . Best to discuss with the Germans, Vitus, who have considerable experience . The fact NICE have not approved the technique is because the data is not long enough. Given there is little to no major work on this in the U.K. this is unlikely to change. 
The data from Germany suggests reoccurrence rates similar to RP without the side effects. 

User
Posted 17 Jan 2022 at 22:43
Who are you suggesting that to, Paul? Everyone in the thread has already had their radical / primary treatment.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jan 2022 at 17:03
Hi I am a new member to this site. Looking at where to go next in terms of potential treatments. Looking at the posts is seems that there is no clear winner in terms of treatment for localised PC. Is that correct? Also i gather there is a lot of work looking at targetted gene and drug therapies. Some unsing Nano bots. Does any one know of any developments in these areas?

User
Posted 18 Jan 2022 at 18:46
I have responded on your own thread Martin.

For clarity, you could copy and paste your comment / questions here across to your own thread.

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

User
Posted 20 Jan 2022 at 15:28

Hi Paul,

 I have read your thread with great interest. I am seriously considering going down this route. I was diagnosed last August with a Gleason 4-3  Stage T2c  with localised PC. 26 cores taken and only 1 with PC and only 30% of that core cancerous. It is in the middle of prostate also. According to everything I have read It is possible that I meet the criteria required. I don't know if size of prostate is relevant as mine is quite large, 99cc. Could this be a problem?

UCHL London being a Foundation Trust are, or have been conducting trials for Nanoknife. I have been in touch with them and they request my hospital forward my details which they have done. So I await their reply. I know Mark Emberton at King Edward 7th London is performing this at a cost of £12,500 plus Mri's etc extra, which if trials are not being conducted at present I am seriously thinking about as I want this out and don't fancy HT/RT. Could you let me know the total price you paid for everything in Germany if that ok? Also what were your PC details? Prostate size, how many cores, where were they, your stage/Gleason etc... Also what age when you had treatment?

Many thanks,

John.

 

 

User
Posted 20 Jan 2022 at 17:08

Hi John

my prostate tumour measured 15mm on the left hand side of my prostrate near the capsular wall. There was no breach outside fortunately.
My Gleason score was 3+ 4 with some elements of 4 in the largest cell.

If you decide to go down the IRE route and can afford it then Germany is the place. My understanding is UCLA refer their difficult cases for IRE to Germany where they have been undertaking IRE treatment far longer. The cost depends on the number of Nanoknife elements required.They are expansive at 1000 Euro each- I needed 4 , bit more commonly 7 are required. 
In terms of cost this was €20000, this covered all travel , treatment and hospital stay( I was there two nights). Whilst I appreciate this is a sum many cannot afford, for me it was an investment in a treatment with fast recovery, fewer side effects ,comparable success rates with RP, and optionality in you can have additional treatments ( unlike RP, radiation treatments).

Travel to Germany is easier than a trip to London! 
The Germans also incorporate Electrochemotherapy  to run alongside IRE which is a novel way of providing additional cancer treatment on adjacent cells . Germany would be far and away the centre of excellence in IRE. 

Vitus who undertake this in Germany have an informative web site and can also send you additional information 

I hope this helps but let me know if I can comment further?

paul 

 

User
Posted 20 Jan 2022 at 17:13

Apologies john

I am 66 and my prostrate is smaller 40. I am not aware prostate size is a key consideration. My biopsy only showed cancer in one area having taken over 20 core samples 

User
Posted 20 Jan 2022 at 18:54

Originally Posted by: Online Community Member

Hi Paul,

 I have read your thread with great interest. I am seriously considering going down this route. I was diagnosed last August with a Gleason 4-3  Stage T2c  with localised PC. 26 cores taken and only 1 with PC and only 30% of that core cancerous. It is in the middle of prostate also. 

Many thanks,

John.

Can you check your diagnostic stats? You can't be T2c and only one positive core. T2c means they found cancer in both sides of your prostate? 

30% of a core being positive is a lot - not 'only 30%'. Will be interesting to see what focal specialists say but it looks to me like you have an intermediate risk cancer snd need radical treatment, not focal therapy. 

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

User
Posted 20 Jan 2022 at 18:57
Having checked your profile, you were diagnosed with T2a not T2c, I think.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Jan 2022 at 19:55

Hi Paul,

i was originally told by my oncologist back in August that I was a T2a. I had an appointment in late Nov with the consultant radiologist. her report was only received by me yesterday stating a T2c. This shocked me so I emailed hospital and a nurse rang me today and had the MRI/biopsy reports in front of her. She confirmed that a T2c was correct. She then proceeded to confirm that out of 26 cores taken, 25 were completely clear and only one was cancerous and of that one only 30% contained the cancer. The MRI showed only in one core slightly right of centre. I'm currently on AS and back for a PSA in March. My last PSA was 9.15.  I am 80 next April and my hospital wouldn't dream of RP because of my age. It grows more slowly as we age and as you know testosterone feeds the tumour and my levels are quite low. I guess I could die of something other than PC they recon. When you say diagnostic stats do you mean ask about the size?

John

 

User
Posted 20 Jan 2022 at 22:05

Hi John

i am sorry your biopsy was not communicated correctly earlier

It is not for me to suggest the best option for you. I have only outlined my treatment of IRE as there is little knowledge in the U.K. yet the treatment offers many advantages over more conventional therapies. Given it’s less invasive and given your age it is certainly worth exploring . 

 

User
Posted 07 Apr 2022 at 17:13

Hi All

 

I outlined in my early post an alternative focal therapy treatment option for prostate cancer called IRE or Nano-knife. This is not a treatment generally offered in the Uk and there is only one research centre at Kings which offers this as private option although a few have been undertaken recently on the NHS. This treatment method was highlighted in the newspapers recently but sadly bad journalism gave the indication is was a treatment method being made available to all which sadly it is not.

I outlined my decision to undergo this treatment which you can read above but in short was probably the least invasive prostate operation, particularly compared with radical prostatectomy or radiation therapy options, recovery was very quick, the side effects were significantly lower and it had optionality should their be a reoccurrence.

 

I had my operation in Germany which is by far and away the leading place of expertise in December of 2021. I have just returned from my three month post operation follow up

 

In terms of the operation this was a one hour procedure and I was eating two hours after the operation. The catheter was my only issue was some small and short lived stomach spasms caused by the electrical currents used. I travelled by plane they after my operation and walked through the airport. Whilst the two weeks with a catheter attached were uncomfortable, once this was removed I was able to pee normally. To date there have been no cases of incontinence using the IRE method and I am please to say that I have suffered no changes to my urinary functions at all.

In terms of erectile function I am pleased to say this is good. Its probably not as strong as before but still good. The consultant informed me their experience is that the nerves repair themselves after 6 to 9 months as with IRE there is no heat to breakdown in the treatment field so adjacent nerves and blood vessels are saved compared with HIFU for example which uses heat.

My three month check in Germany showed my PSA had dropped from 8 to 2.4. The MRI imaging showed all the tumour had been removed and there was no evidence of cancer elsewhere in nodes etc. Naturally I am delighted.

Physically there is no adverse effects and I am now back to full time training.

I have another assessment in Germany in three months time and will update on my results.

Whilst I have previously indicated IRE is not a silver bullet to treating prostate cancer it is an option that should be considered. The fact that it is not available on the NHS is incredibly disappointing and is a result of both legacy issues of conventionally therapies as well as only small data samples being available to satisfy NICE for inclusion on the NHS.

I have lobbied my UK urologist who is looking at my data to see if they should conduct trails using IRE to run along side their conventional treatment options. From my perspective my treatment option has so far been successful and I still have optionality of having the treatment done again should there be a reoccurance which conventional treatment methods don't allows as well as there attendant significant side effects. Interestingly the Germans indicate the reoccurance rate is the same as that of radical prostatectomy!

Sadly most UK Urologists will not identify IRE  as a potential treatment option due in the main to ignorance. It is therefore important you undertake your own research and see if this is suitable for you and put into the mix of options when discussing treatment options.

Happy to answer any questions.

User
Posted 08 Apr 2022 at 11:15

Hi Paul,

Just a follow up to my chat with you in Jan and your last thread..As my PC is localised T2c (confirmed) I saw that UCHL were offering Nanoknife on NHS at this hospital. I contacted them and they requested my urology dept send them all my details. i.e. MTI, biopsies, MRI etc....this they duly did. On Feb 24th I received a call from *Doctors name removed by moderator*, who is the main man in this field in UK. He informed me that due to the position of the cancer...to near the sphincter to the bladder, that he couldn't get access so sadly I was not suitable. As I am Gleason 4-3 he suggested I start treatment...HT (bicalutamide for a month) and then 3/4 months of stomach implants (my first next Tuesday) before RT. I have an appointment with Radiologist 6th May. She said on last appointment she didn't think I would need further HT after RT.

So, in conclusion Nanoknife is now available on NHS at this hospital only.

 

Regards, John.

 

https://www.uclh.nhs.uk/patients-and-visitors/patient-information-pages/irreversible-electroporation-prostate-cancer-ire-or-nanoknifetm

 

 

Edited by moderator 08 Apr 2022 at 15:27  | Reason: Medical professional named. Please remember group rules.

User
Posted 08 Apr 2022 at 11:22

Thank you John

It may be useful to contact Vitus in Germany. They informed me they do a lot of IRE near the bladder and have many referrals from *Doctors name removed by moderator* who declines these more difficult operations. 
Thank you for the update and wish you well on your treatment 

Edited by moderator 08 Apr 2022 at 15:16  | Reason: Medical professional named. Please remember group rules. https://prostatecanceruk.org/get-support/us

User
Posted 08 Apr 2022 at 11:39

Hi Paul,

I asked *Doctors name removed by moderator* if I had gone private would it have made any difference and he said no. I did think about contacting Vitus but I have decided to go down traditional route  as he suggested it ASAP. As I have also had prostatitis (which alerted the PC) the radiologist said it is more difficult to treat. As my prostate is quite large 99cc she needs to shrink it first, hence HT for a few months. I will see how this goes and what MRI later in the year shows. If PC not completely cleared I will then contact Vitus. Does that sound like a plan?

John.

 

 

Edited by moderator 08 Apr 2022 at 15:21  | Reason: Medical professional named. Please remember group rules.

User
Posted 08 Apr 2022 at 11:48

Hi Paul,

On second thoughts, I will contact *Doctors name removed by moderator* at UCHL and ask him why I wasn't referred. See what he says.

 

John

 

 

Edited by moderator 08 Apr 2022 at 15:19  | Reason: Not specified

User
Posted 08 Apr 2022 at 12:04

Hi john

All I can advise is you seek opinions then make your decision 

let me know what happens?

User
Posted 08 Apr 2022 at 12:11

Will do.

John

 

User
Posted 08 Apr 2022 at 15:24

Hi all, 

Please remember to respect the House Rules and not name medical professionals. 

"Don’t share the names of healthcare professionals who are treating you, or disparage particular hospitals or GP surgeries – publishing that information could be considered libel." 

Thanks and have a good weekend

User
Posted 08 Apr 2022 at 15:28

Apologies...I wasn't aware...

 

John

 
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