Prostate cancer

A support group for anyone affected by prostate cancer to come together, share experiences, and ask questions.

NanoKnife

worriedfather
Posted by

Advice and info please...... my son of 36 has recently been diagnosed with prostate cancer and as a father I obviously want to do whatever is best for him. I’ve read up on DaVinci and the best place seems to be Hamburg but he’s only 36 and is really really freaked out by the highly likely side effects even though their success rate at preserving the nerves etc is pretty good . He lives in the UK but I live in Germany near Frankfurt and came across Vitus in Offenbach. I would be very very grateful if anyone that has any experience of NanoKnife,

Grundo
Posted by

Hi WF and welcome.

There are a couple of people on here who have had the Nanoknife, let's hope that they see the post.

Do u have any more stats ie psa , Gleeson score etc?

Regards

Steve

worriedfather
Posted by

Thanks, I hope so too. I don’t have the data but can get it. Would it be helpful to publish it here?

Grundo
Posted by

It's just that the more info u can give can help people on here give the best advice.

I really didn't think that you could get PC at such a young age.

Hope that u get some other posts soon

Steve

singer63
Posted by

Hi worriedfather

I had Nanoknife ablation for PCa in the UK back in early June.  I'm 55.

Dx: May 2019,Gleason 3+4 (7), localised 5mm adenocarcinoma in left transitional zone of prostate
Tests: PSA (4.7), MRI, post MRI 13 core trans-perenial template guided biopsy, 2 out of 7 cores from suspect region positive for PCa
I did some research on PCa treatments, and like the approach of Prof Emberton who has helped pioneer MRI diagnosis and new treatments for PCa in the UK and further afield.
Prior to the final diagnosis (i.e. prior to biopsy) the options on the table included, HiFU, Nanoknife as well as the traditional conservative approach: DaVinci surgical removal.  HiFU has a longer history and is more widely used than Nanoknife, which is fairly new, however due to the location of my tumor HiFU wasn't suitable so Prof Emberton recommended Nanoknife.
Main reasons for that were that at 55 I'm "still falrly young" (!!) and this would give me the best outcome, retaining as much function as possible while treating the disease. I was told that 87% of people with my Dx treated this way could expect 10 yrs without needing re-treatment, with 10% then needing a repeat procedure and 5% crossover to conventional surgery / radiotherapy.
The procedure was a fairly straightforward day case.  I was left with a catheter and bag for a week (which I found very uncomfortable).  Have to say that the discomfort continued after removal, so was probably related to the op rather than the catheter.  I had blood in my semen for > 1 month following treatment, although I'm now basically "dry" (which I was warned would happen prior to treatment due to treatment location).  Little if any effect on erections thankfully.  Urination is slightly more frequent than before (although it has improved with time), and I do get some "urgency" when I need to go, which I didn't exist before.  Other than that things are looking good so far!
Hope that helps a bit - good luck with the decision making and let me know if you need any further details.
All the best
Don
worriedfather
Posted by

Thanks so much Don, that’s really helpful and encouraging.

My son has his next appointment with the NHS consultant in Bristol Sept 17 which I’m pretty sure it will be all about da Vinci and I would like to  be able to give him as much info as possible re nanoknife options prior.

If you are willing it would save me a lot of time and effort if you could let me know who I should contact and speak to about my sons case

Again, many thanks

Kind regards

Simon

singer63
Posted by

Hi Simon

No problem at all.  Everyone is has their own disease/presentation which will differ in severity and spread, so please get all the opinions you can before making a decision (I’m sure you’re already doing that).

I should also mention that NanoKnife is only available privately in the UK as it’s not approved by NICE yet. 

Mark Emberton is based at UCH, and works privately through London Urology Associates. I had my biopsy, MRI and Op at or near the Princess Grace Hospital which is based near Harley St.

All the best to you both.

Don 

mcquik
Posted by

Hi WF,

36 is very young. Can you give me some details, eg, PSA, Gleeson score, location in his prostrate, where he was diagnosed. I underwent Nanoknife with a chemo injection in Offenbach at the beginning of July for a Gleeson 8 localised carcinoma with a PSA of 10. I then spent the next 6 weeks with a catheter in place, tried twice to remove it once after 14 days, then 1 week later but couldn't void, so decided to wait another 3 weeks on advice of my doctor. I am now 3 weeks without the catheter and back and work. Before undergoing Nanoknife I underwent a Gallium 68 psma pet scan in Hamburg to determine whether the cancer had spread beyond the prostrate, thankfully it hadn't: check my posts as I have documented my experience. You will find some useful info and links that can help with your decision in my posts. When I was looking at surgery options I was advised to go with the surgeon with the most experience and the highest number of procedures. Dr Stehling main concern is quality of life: he is very honest and upfront about the disease and its prognosis; he spent over an hour with me thoroughly explaining my cancer, treatment options and side effects. When I weighed up the alternatives offered by my Irish consultant prostatectomy or radiology with a 35-40 % chance of recurrence, impact to EF and possible incontinence, it was a no brainer. After a painful 2 weeks post catheter I can report no incontinence, almost full EF (95%) and this is after IRE treatment with a chemo injection to 1/4 of my prostrate. I also suffered from BPH, chronic prostatitis ( 2 years of pain and discomfort) and epididymitis - like someone pushing a stick into your bladder while getting slapped between the legs by a plastic ball when you were a 15 yr old - any these seem to be cured as well. I am not pain free but its an 80% improvement on what it was, and I seem to be improving daily. Dr Stehling has published his findings, but also have a look at a paper published by Dr Stricker who has achieved remarkable results using Nanoknife on Gleeson 7, PSA < 10, localised to the prostrate.

www.phillipstricker.com.au/

If you want to talk please send me a private message and we can talk on the phone.

All the best Steve