Prostate cancer
posted by Dublinman
03 November 2022

Newly diagnosed

Last reply: 28 January 2024 22:23

Hi, My consultant advised me for prostectomy since my gleeson score is 7. My psa level is 4.8. He mentioned that it might be localised mostly. Is there any alternative treatment like Nanoknife (Irreversible Electroporation) in Dublin ? I have been UK london university hospital offered this? Any advise?

19 comments

Comments

commented by JL
04 November 2022

04 November 2022 08:59

Hi Tough time but we will get through it. I received same diagnosis this week and Urologist also strongly recommended Prostectomy

I have asked Urologist to refer me to medical oncologist and radiation oncologist so that I can review both options. Not sure if I will be any the wiser as both are probably an option. But I think it is worth doing

commented by Cancer Nurse
08 November 2022

08 November 2022 15:13

Dear ‘Dublinman’

 

Thank you for your post on our online community. I hope you will hear from others and their experience of different treatments.

I am sorry to hear that you have been diagnosed with prostate cancer. It is an anxious time for you. We would recommend that you speak to your urologist about the pros and cons of having the Nanoknife treatment done in the UK. He will be familiar with it, and he will also have the details of your test results to date and any other relevant medical history and will be able to advise you accordingly. The Nanoknife treatment is not available in Ireland.

As commented by ‘JL’ your urologist may also arrange for you to see a radiotherapist for his opinion regarding treatment options. This is another opportunity to discuss with a consultant who specializes in prostate cancer, newer treatments that you may be considering elsewhere.

If you would find it helpful to speak to a nurse do phone us at 1800 200 700. Our cancer nurses are here Mon- Fri 9-5pm and would very much like to support you through this.

Kind regards

Anne Marie

commented by dataq
15 November 2022

15 November 2022 15:38

Hi Dublinman
I was diagnosed in January with a Gleeson score of 4/3 early stage 2. Like you I did plenty of research into the various options and I came to what appeared to be the same conclusion that the Nanoknife seemed to be the best option. Having been brought up to always listen to both sides of any argument before making a decision I listened to the experts and the main thing that came out of it was if you have this procedure you cannot have robotic surgery to remove your prostate at a later date. This is based on evidence from those that have carried this out, due to the level of tissue damage that might occur during the treatment.
I was given 3 options if I wanted to have my treatment in Ireland.
The first was Robotic surgery (removal) which has at this stage because of the quantity being carried out similar outcomes to Nanoknife in terms of recovery side effects.
The second was Radiotherapy every day for four to six weeks which seems to offer a slightly quicker recovery time than surgery.
The third was Brachytherapy similar to Nanoknife in terms of not being able to have Robotic surgery afterwards but the initial recovery and side effects are much shorter.
At this point I was unsure so I researched all of the above and the one thing that came out of it was the medium to long terms outcome of them all are very similar in terms of delayed side effects. The risks are similar in different ways and this is what you have to weigh up, sit down and go through what you would like at the end of this.
I opted for Brachytherapy because the initial recovery time appeared to be the shortest. I had the surgery and returned to work after two weeks having been told I had to rest by my company (I spent most of it sleeping). Another 2 weeks later and the effects start to kick in. Tiredness and mind fog were probably the worse. Having been through this with my wife I had seen some of the effects radiation can have on your body she assured me it would get better and it has. I am not sure if this will help in any way I would be happy to answer any question you might have if you want to post them.
Whatever you choose I wish you the best of luck in choosing a good surgeon no matter what option you go with.

commented by JL
28 December 2022

28 December 2022 02:05

Hi

I have had a similar diagnosis and like you explored all the options and was encouraged to go with robotic surgery by Radiation Oncologist and Urology Surgeon. They both felt it gave me best long term options should I have a reoccurance I had the surgery on Dec 9th and recovering well.
I would consider my self fit and am a bit surprised how tired I am and how much rest I need. Once I accepted this it is ok
My main challenge now is trying to regain urinary continence which I am finding mentally and physically challenging. Have been advised that it can take time and that I need to be patient. Fingers crossed it will happen sooner than later.
Best of luck with everything.

commented by parky
04 January 2023

04 January 2023 00:53

Hey, I received my diagnosis mid November. I have a Gleason score of 7. Like above I was given the 3 options available. It was a lot for us to take in and digest. The urologist suggested that for my score of 7 that perhaps the Brachytherapy would be my better option. He said that he would need to discuss my case with the oncologist I Galway to see what his advice would be. Two weeks later we returned to see the urologist in Sligo, he informed us the his colleague in Galway would be happy to offer me that treatment. Mid December we met with the radiation oncologist in Galway. He talked us through the three options agin, their side effects and possible risks. By the end of the consultation we agreed on the brachytherapy, he then did an ultrasound of the prostate to map it. ( I have to say being put in stirrups was most undignified)
So now the waiting game for treatment, he said possibly February or March. Any advice on what to expect post procedure would be most appreciated.
I am feeling very anxious about everything.

commented by JL
07 January 2023

07 January 2023 17:23

Hi Dublinman
Hope your surgery went well on December 30th and that you are comfortable

If you have any questions that you think I can help you with let me know.

Next step is getting Cathera out. For me this was straight forward, minor discomfort.

You will need pads. I bought them through Amazon / incontince store in UK. They are much better value. Delivery takes a couple of days
Not sure where you surgery. I booked appointment with specialist physio in Mater Private for incontinence and ED. Had first sesion on Thursday and would highly recommend doing. Book ASAP as she is very busy.

commented by Coneyboro
09 May 2023

09 May 2023 00:16

Hi Friends,
I've also recently been diagnosed (March 2023) with prostate cancer: T2N0Mx; Gleason 7, 3+4; CAPRA 5 - Intermediate Risk; Clinically localised.

Like dataq mentioned above, I've been given a choice of three treatments: radical prostatectomy, external beam, or LDR brachytherapy (seeds). All appear to have quite negative side-effects - in particular loss of sexual function / ED. And all appear to be similarly effective regarding the likely recurrence of cancer.

However what I have read about Nano Knife treatment indicates that it causes fewer of these side-effects;
and the commentaries suggest that surgery / prostatectomy IS a possibility if the cancer recurs - because the Nano Knife treatment does not involve the tissue damage caused by the radio / radioactive treatments (which apparently do preclude 'salvage' surgery).

Has anybody else heard more about this Nano Knife treatment, and / or the possibilities of 'salvage' treatment if cancer recurs?

It's not available in Ireland, but has started to be available on the NHS in University Hospital London - as well as in private clinics in Germany and elsewhere.

All the best to everybody dealing with this sort of thing!

commented by RM808
06 July 2023

06 July 2023 16:06

Hi.
I wanted to share my story with you in the hopes that it might assist. In 2021 I was diagnosed with a 3+4 tumour on my prostate – 5mm. I am in my mid 40s so I was considered young to have this and I was terrified, firstly, at having cancer and secondly at being told I “had” to have a surgery that could lead to all sorts of side effects. I set about doing my own research and that was where I came across Focal Therapy and nanoknife. What I quickly realised is that Ireland, compared to UK, US, Germany, France etc. is much further behind in terms of their thinking and approach to prostate cancer. Through my research I came across two brilliant men, Dr. Jonathan Coleman in MSK New York and Professor Mark Emberton in London. Both of these men are pioneers in the field of prostate cancer and in particular, focal therapy. I shared all of my files with them and I received an opinion from both. Both said I was favourable for nanoknife.

Following this I had my first consultation with Mark Emberton over Zoom. Mark came back to me and said that I was a suitable candidate for Nanoknife and he was sure that he could help me. In Nov 2021, I travelled to London for my surgery. It was a one day procedure followed by a few unpleasant days with a catheter etc. However, 3 days later the catheter was removed and I had full urinary function immediately. I was back working the next day with no problems. I had an MRI scan afterwards and it showed “complete ablation” of the tumour. 6 months later I had my first PSA and it was at 0.7. It had been at 2.1. In December 2022, my PSA was at 0.6. That same month I travelled once again to London and had follow up scans consisting of MRI and PSMA. Mark reviewed my scans and confirmed to me that all cancer was completely gone and I was in remission. A joyous day indeed.

I can confirm that there were absolutely no side effects from the procedure, which was fully proven when myself and my wife welcomed our third child in April of this year, through fully natural means! If you have been diagnosed with Prostate Cancer I would encourage you to have a fully investigate your options. In the UK, focal therapy is now a fully recognised option on the NHS. Also, there is a comment in this thread which states that you cannot have robotic surgery after nanoknife. I was told this by an Irish doctor but it is untrue. Because nanoknife does not use heat, tissue is undamaged so should there ever be a recurrence, all options still remain open to you.

commented by Joe
29 September 2023

29 September 2023 14:07

Hi RM808,
I have been diagnosed with prostate cancer and am reviewing my options.
I have read your post on this treatment, and would like to make contact with you if possible.
Regards Joe.

commented by RM808
13 December 2023

13 December 2023 13:50

Hi Joe. Sorry for the delay in responding - I had not looked at this thread in a while. Just by way of update, I recently had my 2 year MRI scan in London. PSA is stable at 0.59 and the MRI is showing all clear with no evidence of recurrence. So overall to date this has been a complete success. I will have another year of close monitoring which means 6 month PSA tests and I will get another MRI in 12 months. But so far so good. Let me know if you have made any progress. I am conscious it is some months since you left this message and my apologies for not seeing this. I know how stressful this time can be.

commented by Joe
22 December 2023

22 December 2023 22:06

Hi RM808,
My story so far, 56yrs old went for routine blood test and was informed my PSA were up and need to check further. Sent for MRI then biopsy and was diagnosed in June 2023, with 2cm tumour RHS 3+4 confined in prostate with no symptoms. I was given 3 option, surgery (robot surgery), Brachytherapy & AS. Spoke to my GP and he told me in 25 yrs. in practice everyman that he sent for the above treatment suffered from ED and incontinence afterwards. This was something I wanted to try and avoid so I started researching and came across your story.
I contacted King Edward V11 private hospital and had a zoom call with Prof Emberton who reviewed my MRI and taught I was worst than what I was told. He offered to do an MRI with a higher magnitude machine to get a clearer picture. We then travelled to London in September and had the MRI done. 2 weeks later had another zoom call with Prof. Emberton with my MRI results and confirmed that all was OK and that I would be a suitable candidate for Nanoknife and explained the procedure in detail and was booked in for Nov. 23.
Travelled over again in Nov. had the operation done on the Friday (day case) @ 9.00a.m. back in the room @ 10.00 a.m. and left the hospital @ 1.30p.m. and walked back to the hotel with a catheter in place. Walked around London Saturday & Sunday then back to the hospital on the Monday to get catheter removed relief as this was uncomfortable for the few days and another MRI. Otherwise, was feeling good. Flew home on the Wednesday. 6 weeks on and I am doing great. No incontinence or ED all working fine.
I know its early day for me, but I am absolutely delighted with the treatment so far.
To anybody who is reading this my advice is DO your research. This treatment targets the tumour only and is suitable for certain PSA and Gleeson sores and can be repeated if needed. It is not available in Ireland.
RM808, I would like to add, it was reading your story which was in great details about your journey, and your outcome afterwards sent me on this road and for that I am truly grateful.
I am delighted to hear you are doing well 2 years on and wishing you and your family all the best.
Thanks Again.
Regards Joe.

commented by RM808
18 January 2024

18 January 2024 11:03

Hi Joe,

Just saw your story here and it sounds like a mirror copy of my experience. I am really delighted to hear all has gone well for you and I am confident that it will continue that way. Mark Emberton really is not only a great surgeon, but a terrific guy and it is fantastic having him in your corner. I am also delighted that my story helped in some small way so thanks for reaching out.

Best of luck going forward
Neil

commented by wazzuckoz
12 October 2023

12 October 2023 09:26

Hi All

I'd strongly recommend looking at Nanoknife before opting for more invasive procedures. Not all folk are appropriate for the treatment of course, but if you are, it's a bloody good option considering the side effect profile.

I'm 50, with GL6 ( but older brother has more advanced now, so considering striking early ).

I'd be keen to hear of anyone who had it done, and how they've gone further done the line with side-effect now that scar tissue would have settled in etc.

commented by RM808
13 December 2023

13 December 2023 13:54

Hi Wazzuckoz. I just left a response to Joe above. As you will see I am 2 years out and all has gone well. No cancer and no side effects. One more year of close monitoring to go but the Doc is very happy with where we are. It is well worth looking at.

commented by jfaf
15 January 2024

15 January 2024 17:09

Hi all,
Many thanks for all the info. Can anyone give any advice on the cost of the nanoknife?

commented by RM808
18 January 2024

18 January 2024 10:58

Hi Jfaf

The cost for the procedure in London is somewhere around the £22k mark, excluding scans, travel/accommodation expenses etc. My Irish insurance covered me for "the closest equivalent treatment" in Ireland, which is prostatectomy. So basically your insurer should give you the cost of a prostatectomy towards your nanoknife procedure. This covered the vast majority of the procedure.

commented by Joe
19 January 2024

19 January 2024 14:54

Hi,
Just to comments on RM808 message above because, I tried to claim from my insurance company VHI and they refused.

Reason given were:

1. Based on the information available to VHI, Nanoknife electroporation does not met Vhi’s definition as a 'proven form of treatment’ and as such, no benefit will be paid.

2. In addition, as the treatment took place before approval was sought and granted, you do not satisfy the criteria for treatment abroad criteria as set out in rule 6c 25) of the Terms and Conditions of your membership.

(I didn't get approved before travelling, because Kind Edwards V11 private hospital computer system got hacked and was shut down for a few weeks so they were unable to sent it back in the time frame that VHI requested. On my return, I did sent the form to VHI to which there response was 1 & 2 above.)

Regards
Joe

commented by sineadt
28 January 2024

28 January 2024 22:23

Hi Neil,

Thank you so much for sharing your story and findings regarding Nanoknife. My Dad has recently been diagnosed with prostate cancer and the only treatment his consultants here in Ireland want to refer him for is a prostatectomy. After a lot of research and a pet-scan he has been deemed suitable for Nanoknife in London. The problem we are having is that his Insurance company want a letter from his Irish-based consultant to recommend this treatment but one of his urologist consultants here has already said he doesn't know enough about this treatment to recommend him for it. We are trying to schedule an appointment with his other consultant to see if he will write the recommendation but we may have to wait for this appointment and the outcome. Would you mind telling me which Insurance company covered your procedure in the UK and if you also had to get an Irish-based consultant to recommend you for the treatment? If so, who was your consultant? Apologies for asking for so much information, we are desperate at this stage to get this treatment done.

commented by jfaf
20 January 2024

20 January 2024 22:47

Thanks a million RM808, I'm with laya so hopefully they would offer that.

That's a tough one Joe, sorry to hear that.

Jfaf

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