IRE

Hi Paul,

Well done, it's always good to read of people having different treatments.  I've never heard of IRE but notice UCLH offer it for pancreatic cancer.    I haven't got as far as looking why NICE don't offer it for PCa but as you say it could be that existing treatments are regarded adequate bearing in mind other factors such as cost and skills.  Also does Germany offer it on their health system or is that a private arrangement?

A couple of minor points.  The ability to have an orgasm isn't usually effected it's the erection that is reduced.  Also do private hospitals only offer what NICE recommends?

It's also good that you say the procedure can be repeated.

Keep us posted.

Regards
Peter

As I said treatment options are a personal decision. After extensive research this option offers lower side effects and optionality if there is a reoccurrence 

I self funded this do suspect private medical cover will not cover this. 
The Vitus centre treats people from all over the world who like me seek a more focused therapy. When I was there there was a patient from Egypt!

Whilst the NHS has many positives it does tend to preserve existing treatments and newer treatment methods may be disadvantaged. 

It is always interesting to hear about overseas treatment though and for those who can afford it, worth considering. We have members like you and Barry who went to Germany for treatments, SS who went to America for FLA and I can't remember the name of the member who went to Prague for Proton beam therapy.

Thank you for highlighting the Nanoknife experience of “Dodgy”. Have to say that sounds awful and supports going to the experts in Germany rather than this UK research establishment. Results from Germany are very impressive and this should be looked at when evaluating treatment options rather than what “Dodgy” sadly experienced. 
If your urologist dies not know about this suggest he and you look at the research findings. 
whilst not a treatment option open to everyone it’s one worth considering as it has optionality which sadly you can’t get with RP or radiation treatments . 

Thank you Barry

Wishing you a happy New Year 

With all of these focal treatments, you need data on retreatment rates and side effects thereof. HIFU does seem pretty good in that regard: IRE might be the same. But these are short series and we have a chronic condition (often two, including BPH)  with focal treatments attracting a younger patient base. I would want to know the German experience before I committed, personally.

I understand that Nanoknife and HIFU are mostly suitable for low/intermediate PCa stages T1 and T2. Possibly higher on a case by case basis. My pre-RALP MRI and biopsies gave a diagnosis of stage T2b but my post-RALP pathology confirmed T3a and I understand these upgrades are not too rare but are accurate. Is there a danger with the focal treatments that the true T stage may remain undiscovered resulting in a higher risk of cancerous cells being left behind? 

... and that's why I came off AS and had RALP. 

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 

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. 

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

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

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

Will do.

John

Hi Lyn...I guess when you have this decease you look for any thing that might be able to sort it. I have taken what Paul said...perhaps he can let us know where he got any further info from. I do know Vitus have been doing this treatment for many yrs prior to the said surgeon. 

Paul?

It's too near the sphincter to the bladder not bowel..

I do not wish to get into any conversations on what treatment methods you should accept. I am real and my only aim is to make people aware of a treatment option that appears to have significantly lower side effects and better outcomes than conventional treatments currently offered in the U.K. There are legacy issues and long term data issues which prevent NICE offering on the NHS. It does not however stop patients researching and coming to there own informed decision. 

I won’t dignify giving a response as to my aims and legitimism - unnecessary and offensive   

I would never intend to offend you Paul. I am grateful for all your threads on Nanoknife having experienced it yourself.  I have just looked on the surgeon's comments on a page from King Edward V11 hospital (not NHS) and he says " around 20% of men with localised PC benefit from it. It's useful for treatment of anterior tumours which would previously have been hard to treat. However it may not be suitable for all patients as the position of the tumour may mean other treatments are more appropriate" .....20% is a small amount relatively speaking.

Let's see what his reply to me is regarding referral to Vitus.