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Treatment options especially interested in Nanoknife

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User
Posted 15 May 2024 at 22:03

My Dad (64) was diagnosed with prostate cancer in April 2024 when he met with a CNS. The experience wasn't great (I don't think I can give specifics as I can see others have been warned about liable). But my Dad says he was told the cancer is localised to one lobe and he has a Gleeson score of 7 (4+3). He is currently awaiting a bone scan to ensure it hasn't spread and will have his first appointment with an oncologist in the beginning of June. Obviously all of this research into treatment is on the assumption on the fact that his cancer is localised to just one lobe of the prostate, hasn't spread and that his Gleeson score is correct. His last PSA test was in March and it was 6.4. He had it retested at the GP 2 weeks ago and it came back as 0! The GP said it must've been a mistake so he's had it retested today (the soonest they could get him in for a blood test).

He has just received a letter from the hospital to say that his score is 8 (4+3) (those maths don't add up to me) and that he'd agreed to surgery including precautionary lymphadenectomy (he says he didn't agree to this). My Mum has requested his notes but he was told this isn't possible and to speak to his oncologist in June (my Dad has given approval to the hospital to speak to my Mum because he works in a very noisy environment and can't speak to them when he's at work).

He wants to be fully informed and explore all treatment options, especially any that have lower risk of side effects. My uncle (my Dad's brother-in-law) had Proton Beam Therapy for prostate cancer at The Rutherford in 2018 which was hugely successful and my uncle has had no side effects. Unfortunately the Rutherford went into administration since then and so is no longer an option. My uncle is quite well read on treatments for prostate cancer due to his own diagnosis and has suggested my Dad considers Nanoknife as it has fewer side effects. I think from my research that only King Edward VII and Focal Therapy Clinic offer this privately in the UK (my Dad's NHS trust don't offer this) but I can see someone on these forums mentioned a German clinic a few years ago as they are more experienced than UK clinics.

I wondered if anyone had any recent experience of Nanoknife in the UK or abroad that they could share. I think I read that Focal Therapy Clinic mentioned a cost of £15-£16k, but I don't know if that's accurate? All positive and negative experiences are welcome. I just want to help my Dad be as informed as possible regarding treatment options and be able to act quickly one he's had the result of his bone scan. I'd also welcome people's experiences of other treatments, including proton beam at clinics other than the Rutherford. 

User
Posted 16 May 2024 at 22:01

Originally Posted by: Online Community Member
Your Dad is a comparatively young man. One thing to bear in mind about focal treatments such as this is that they have an extremely poor track record as a permanent fix; from the stories I've read here the cancer always seems to come back after a few years, which is probably the reason that the NHS doesn't offer it. Radical treatments such as RP and RT, although they do indeed have more side effects, have an excellent success rate for permanently getting rid of the cancer.

Best wishes,

Chris

Chris, I think you would do well to report conclusions from trials and leading Consultants rather than your impressions based on some of the 'stories' of some men who have posted on this forum.

Firstly, Focal treatments do not have an extremely poor track record as a permanent fix but experience has shown that it sometimes requires two applications to get results that are comparable with RT or Surgery and overall side effects are generally far less.  You may find this interesting.  It reports from some of the most highly regarded Consultants in the PCa world, three of them involved in my case.  https://discovery.ucl.ac.uk/id/eprint/10128675/1/Emberton_Focal_therapy_compared_to_radical_prostatectomy_for_non-metastatic_prostate_cancer_a_propensity_matched_study.pdf

Secondly, Nanoknife (Irreversible Electroporation) is now available on the NHS like other Focal Treatments such as HIFU and Cryotherapy are but only at specialist Centres. https://www.uclh.nhs.uk/news/uclh-first-nhs-use-nanoknife-prostate-cancer It has been shown that Focal Therapy is superior to both Prostatectomy and RT in terms of cost/QOLY so it is likely that it will become more frequently administered in future. https://discovery.ucl.ac.uk/id/eprint/10176254/1/Focal%20therapy%20versus%20radical%20prostatectomy%20and%20external%20beam%20radiotherapy%20as%20primary%20treatment%20options%20for%20non-metastatic%20prostate%20cancer%20%20results%20of%20.pdf

Thirdly, you say that RP and RT have excellent permanent success rates.  However, these treatments eventually fail in about a third of cases, which I wouldn't describe as excellent!  https://www.nature.com/articles/s41391-023-00712-z

If the OP is interested in Focal Treatment, I suggest he discusses this with UCLH in London who could best advise on his suitability, as they have the most experience with various types of Focal Treatment in the UK.

Edited by member 16 May 2024 at 22:23  | Reason: spelling and update

Barry
User
Posted 17 May 2024 at 19:55

Hi Richard,

It is unfortunate that the Rutherford Proton Beam facilities proved not to be viable because there are are some cancers where it is the best solution particularly for the head and neck. The USA, where Proton Beam was first developed, have seen the greatest number of centres and a good proportion of those treated has been for PCa. However, although opinion on it's effectiveness for treating PCa varies, with a dearth of comparison on it compared to other forms of RT, it has not generally proved to be significantly more effective than other forms of RT, which have in any case improved greatly over recent years. Like almost everything else there is a market for used medical equipment and it may well go abroad or be used in research, the UK which is being served by the Proton Centres at The Christie in Manchester and at UCLH in London.

It is difficult to compare treatments for a number of reasons. Research and improvements in techniques and equipment as well as scans are an ongoing process and it takes years to assess by how much patients have benefitted over a meaningful period. At one time Surgery was considered the 'Golden Standard' for treating PCa but RT is now challenging this concept. Indeed some Oncologists argue they can do as much as a Surgeon by using RT and can in fact go beyond where a Surgeon can cut. Results will also be affected by patient selection as Oncologists are often left was the more difficult cases that Surgeons wish to avoid. Other forms of treatment like Focal are also becoming more practised. As regards trials, these have historically been done by small teams with a limited number of men and using their own criteria. Unsurprisingly, results sometimes differed considerably. Today there is more effort to harmonise criteria such as for example accessing as certain times after treatment and having wider involvement, even multinational trials.

You asked why a third of men was the figure given as the Biochemical failure rate? This partly goes back to the last paragraph. It will in reality depend on the age, and staging of the cohorts studied and a number of other factors that lead to differences. At a quick check I searched the net and the lowest number I saw I believe was 11% and the highest 55%. This is such a large disparity due to various differences that to get a more averaged figure, a third is sometimes quoted.

 

Edited by member 17 May 2024 at 22:35  | Reason: Not specified

Barry
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User
Posted 16 May 2024 at 07:37

Hi, 

I don't have any experience of Nanoknife so bumping this up and hopefully someone else will comment. 

Wishing your dad good luck. 

Kev.

User
Posted 16 May 2024 at 15:51
Your Dad is a comparatively young man. One thing to bear in mind about focal treatments such as this is that they have an extremely poor track record as a permanent fix; from the stories I've read here the cancer always seems to come back after a few years, which is probably the reason that the NHS doesn't offer it. Radical treatments such as RP and RT, although they do indeed have more side effects, have an excellent success rate for permanently getting rid of the cancer.

Best wishes,

Chris

User
Posted 16 May 2024 at 22:01

Originally Posted by: Online Community Member
Your Dad is a comparatively young man. One thing to bear in mind about focal treatments such as this is that they have an extremely poor track record as a permanent fix; from the stories I've read here the cancer always seems to come back after a few years, which is probably the reason that the NHS doesn't offer it. Radical treatments such as RP and RT, although they do indeed have more side effects, have an excellent success rate for permanently getting rid of the cancer.

Best wishes,

Chris

Chris, I think you would do well to report conclusions from trials and leading Consultants rather than your impressions based on some of the 'stories' of some men who have posted on this forum.

Firstly, Focal treatments do not have an extremely poor track record as a permanent fix but experience has shown that it sometimes requires two applications to get results that are comparable with RT or Surgery and overall side effects are generally far less.  You may find this interesting.  It reports from some of the most highly regarded Consultants in the PCa world, three of them involved in my case.  https://discovery.ucl.ac.uk/id/eprint/10128675/1/Emberton_Focal_therapy_compared_to_radical_prostatectomy_for_non-metastatic_prostate_cancer_a_propensity_matched_study.pdf

Secondly, Nanoknife (Irreversible Electroporation) is now available on the NHS like other Focal Treatments such as HIFU and Cryotherapy are but only at specialist Centres. https://www.uclh.nhs.uk/news/uclh-first-nhs-use-nanoknife-prostate-cancer It has been shown that Focal Therapy is superior to both Prostatectomy and RT in terms of cost/QOLY so it is likely that it will become more frequently administered in future. https://discovery.ucl.ac.uk/id/eprint/10176254/1/Focal%20therapy%20versus%20radical%20prostatectomy%20and%20external%20beam%20radiotherapy%20as%20primary%20treatment%20options%20for%20non-metastatic%20prostate%20cancer%20%20results%20of%20.pdf

Thirdly, you say that RP and RT have excellent permanent success rates.  However, these treatments eventually fail in about a third of cases, which I wouldn't describe as excellent!  https://www.nature.com/articles/s41391-023-00712-z

If the OP is interested in Focal Treatment, I suggest he discusses this with UCLH in London who could best advise on his suitability, as they have the most experience with various types of Focal Treatment in the UK.

Edited by member 16 May 2024 at 22:23  | Reason: spelling and update

Barry
User
Posted 16 May 2024 at 23:23

I definitely think he/she/you need to get hold of his notes. The fact they think he has agreed to surgery but he hasn't is worrying. I would be checking that the dates and times they have recorded for the meetings/procedures are in agreement with the appointment times your dad actuy attended. 4+3=8 needs to be clarified, also the two PSA results being completely different. Keep every letter, and sign up with the GP online service so you can see all correspondence between the GP and hospital and vice versa.

Mistakes in record keeping should not happen in the NHS, but it does happen, so you need to be on top of it. A locum at my GP surgery did not put my PSA (28) on the letter to the consultant, the consultant was about to send me on my way home without any further tests, until I mentioned the 28 PSA, fortunately that resulted in me being diagnosed rather than being sent home.

Once you are sure you have the correct diagnosis, then start thinking about treatment options.

Dave

User
Posted 17 May 2024 at 07:02

Hot Flush o'clock already:(

I notice the frequent use of Flash instead of Flush on the forum, not sure if this is an adoption of an Americanism or an attempt to differentiate our suffering from that which our women folk have been complaining about for many years, but I think they're pretty much one and the same.

 

Pandatoffee,

Hopefully you'll get full access to the notes shortly, presumably these will include an MRI report which should help with regards to pursuing options and indicate why they plan on removing nodes.

 

Does anyone know what happened to the Proton beam machinery from The Rutherford?

I don't recall it featuring on Can't pay? We'll take it away!

 

Barry,

I'm not great at analysing Scientific papers, but the first one you referenced looks to be of the highest quality and does indicate slightly better outcomes with less side effects in like for like low risk Pca, I did wonder if it would have been possible for them to do a similar comparison with RT options, perhaps Brachy or the data from the 5 fraction no HT EBRT trials that were carried out before it's roll out in the NHS.

It would also have been interesting to hear an opinion on the study from the feather ruffling Oncologist who drifted through the forum choosing to have RP for his low risk Pca.

 

The cost analysis paper I found hard work and I have doubts about the NHS's ability to accurately cost things, for example the unit costs of EBRT, which I'd have thought would vary greatly between the large multi LINAC centres which sound to process people in a production line kind of way and smaller RT departments, also the on going switch to 5 fractions will presumably save costs.

 

The Biochemical recurrence paper I struggled with, I'm not convinced about their data scraping.

Why couldn't they put percentage figures for each of the radical options as opposed to using the oft quoted, “just under a third?"

 

 

Edited by member 17 May 2024 at 07:27  | Reason: Not specified

User
Posted 17 May 2024 at 19:55

Hi Richard,

It is unfortunate that the Rutherford Proton Beam facilities proved not to be viable because there are are some cancers where it is the best solution particularly for the head and neck. The USA, where Proton Beam was first developed, have seen the greatest number of centres and a good proportion of those treated has been for PCa. However, although opinion on it's effectiveness for treating PCa varies, with a dearth of comparison on it compared to other forms of RT, it has not generally proved to be significantly more effective than other forms of RT, which have in any case improved greatly over recent years. Like almost everything else there is a market for used medical equipment and it may well go abroad or be used in research, the UK which is being served by the Proton Centres at The Christie in Manchester and at UCLH in London.

It is difficult to compare treatments for a number of reasons. Research and improvements in techniques and equipment as well as scans are an ongoing process and it takes years to assess by how much patients have benefitted over a meaningful period. At one time Surgery was considered the 'Golden Standard' for treating PCa but RT is now challenging this concept. Indeed some Oncologists argue they can do as much as a Surgeon by using RT and can in fact go beyond where a Surgeon can cut. Results will also be affected by patient selection as Oncologists are often left was the more difficult cases that Surgeons wish to avoid. Other forms of treatment like Focal are also becoming more practised. As regards trials, these have historically been done by small teams with a limited number of men and using their own criteria. Unsurprisingly, results sometimes differed considerably. Today there is more effort to harmonise criteria such as for example accessing as certain times after treatment and having wider involvement, even multinational trials.

You asked why a third of men was the figure given as the Biochemical failure rate? This partly goes back to the last paragraph. It will in reality depend on the age, and staging of the cohorts studied and a number of other factors that lead to differences. At a quick check I searched the net and the lowest number I saw I believe was 11% and the highest 55%. This is such a large disparity due to various differences that to get a more averaged figure, a third is sometimes quoted.

 

Edited by member 17 May 2024 at 22:35  | Reason: Not specified

Barry
User
Posted 18 May 2024 at 21:49

I know a chap over near Oxford who had proton beam therapy around your dad’s age. Shame to see the facility closed down. Ref the bloods (PSA)…always ask for a copy of the blood report that the lab sends through as they will have it. I learnt this fairly early on as saves stress from various interpretation/filtering en route. I pick mine up in person to simplify the process. I used to get results like ‘normal’ or ‘<0.01’ when the actual number was <0.006 etc. if asked why you want it just say for medical records. I maintain my own as so many medics can be involved with potential for slow communications I carry a copy of my medical dossier for anyone new in the process.

Edited by member 18 May 2024 at 21:53  | Reason: Not specified

User
Posted 17 Aug 2024 at 15:28

Hi

77 yo  Gleason 3+5, PSA 6.54, PHI 39.28 PI-RAD 4 (all tumors on one side) Prior to NanoKnife procedure in March 2024.

Currently PSA 1.96

Everyone has different outcome goals and I believe that should be part of any discussion. From what I understand all procedures have the risk of requiring some future treatment. Some more than others.

At 77 , I personally was seeking and was willing to take some additional risk with this newer procedure based on my age and QOL (Quality of Life) considerations. I was seeking to minimize the side effects that present with other procedures. My hope was for an outcome that would land me in the Active Surveillance pool where my condition could be monitored regularly if and until I may or may never need to have additional treatment. Time will tell.

I was also intrigued with the “claims” that this procedure was less destructive, could be repeated, and potentially left most other procedures available if needed in the future.

There are other Focal therapies that have been around longer that may be available at lower or no cost. You’ll find more info about them on this site.

Cost in the US, Canada, and UK are very similar…about $20,000 US. 
Your Father and Grandfather are lucky to have you advocating for them…Good luck

 

 

User
Posted 17 Aug 2024 at 15:42

UCLH does Nanoknife on the NHS I think.
Imperial might too, also have a significant focal therapy centre.

 
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