SBRT Cyberknife on the NHS

Hello Tedstar 

I am sorry no one on the Community has replied to your question.  The link below may be of some help as it details NHS hospitals offering this treatment:

https://prostatematters.co.uk/treatments-for-in-capsule-diagnoses-t1-t2/where-to-access-sbrt-t1-t2/

I am not sure if anyone had had this treatment - but by me replying your question will be "bumped" back to the top of the forum.

I hope this helps.

Best wishes - Brian.

Hi Tedstar,

I can't give you any information on the outcome / side effects as although I was due to have this treatment at Derriford hospital Plymouth, it turned out from my planning scan that my prostate was too close to my bowels.  Because of the higher dosage in each of the 5 treatments, my consultant advised there was a high risk of getting a perforated bowel.  I did ask whether having Space Oar was possible but was advised that NICE had not approved it for use in the NHS, so ended up having 20 fractions.

When I originally chose SABR over the normal higher number of fractions, I was told that results & side effects from the initial trials were very similar to conventional RT.

Hopefully someone who has had the actual treatment will reply with more information for you.

All the best,

Brian

Hi Brian

Thank you so much for your response. It's much appreciated.

The available information about SABR/SBRT side effects seems quite sparse.

From what I can see, the effects are similar to regular RT with potency and continence problems. 

All the best and thanks again

Thank you for bumping my query.

All the best

Hi Tedstar, 

I'll start with my diagnosis and treatment history:

Gleason 3+4 adenocarcinoma with 3/10 cores - PACE Trial randomised to CyberKnife treatment completed November 2012.
Recurrence in the left seminal vesicle with robotic excision of left seminal vesicle and vas deferens – June 2019 showing Gleason 4+4

PSA 2.0 October 2020

PSA rise to 5.9, repeat PSMA PET/CT scan February 2022 showed no suspicious PSMA avid lesions

May 2023 PSMA PET scan: Low-volume recurrence at left seminal vesicle bed, left pelvic skeletal metastasis.

Plan commenced in July combined androgen blockade, Zolodex and Enzalutamide.

I was in my 50s when diagnosed, did a lot of digging about treatments. My father had PCa and went the radiotherapy route. He heard of Cyberknife in the States and told me about. At the time, only Royal Marsden and Mount Vernon hospitals had it. RMH was running the PACE trial.

I managed to get on the trial. Couple of days at RMH pre-consultation, taking pictures and then v5 days of treatment over two weeks. I was working (office job) throught the treatment and going to the gym. No serious side effects during treatment. About 3 months after treatment, struggled with the fatigue however that improved. 

No issues with bowels, no incontinence, some problems with urgency and frequency but I think those come with the territory. You can see above that I've two recurrences, I call myself "Mr 5%" at hospital visits. But I'm here and doing well 11 years after my treatment.

My main reasons for chosing Cyberknife were; a) I get to keep most of my clothes on during treatment, b) no organs are removed or blood let and c) no need for hormone treatment. I was pleased with how smoothly the treatment went, that it was completed in two weeks and not very disruptive.

I almost made it on b and c. But I can tell you robotic surgery wasn't too bad. THe hormone treatment? I'm coping well. Better than I thought I would. I'm determined to not let this disease define me. That's helped  lot over the past decade.

I'm not promoting Cyberknife, everyone's decision is personal, based on their circumstances. I wish you the best outcome whatever you choose and if I can be of any more help, let me know.

Roger P

Hi Roger

Thanks very much for sharing your experience. It is very helpful to hear.

It sounds like you have coped well considering, and are keeping strong!

My list of questions for my consultations are growing daily.

Long may you stay well.

Thanks again

Best wishes

Hi Tedstar

I am a little late in reply to your post and I can add too much information as I am having my Cyberknife treatment in early January at the Royal Marsden Chelsea. I have just had the final pre-radiation tests with gold seeds applied and two scans completed, on alternate Mondays. We chose to wait until after Christmas although it could have been done in December if I had wanted.

My diagnosis is Gleason 7 (3+4). Strangely my PSA is 1.1 and has been around this level for the past 6 or so years that I have been having PSA tests. I had no reason to have regular tests other than being aware of needing to keep a check on these things. 

I think it is a national scandal that men aren't offered regular MRI scans to check for PC.  

I don't know where you are in terms of deciding on your treatment but I went with CK for many reasons mainly because I wanted to avoid hormone treatment and 20 daily sessions of radiotherapy. 

I was diagnosed with a tumour at Kingston Hospital after a self-funded MRI scan. Kingston does not have the Cyberknife option but I asked to be referred to the RM. Let me know if you have any questions that I can help with. 

I think it is a national scandal that men aren't offered regular MRI scans to check for PC.  .

Couldn’t agree more! Us women get smears and mammograms! You men get nothing! I was at a meeting the other week. There was a GP there. The meeting was nothing to do with PCa but all of a sudden the GP said that more and more men were requesting PSA tests. The message is obviously getting out there and you men are beating your way to your surgeries but I’m still talking to men and wives who do not realise that this test must be done and must be done repeatedly and regularly! It would be so much better if MRI was on offer to all men in the same way as mammogram

Yes, and then when I asked for more regular and frequent tests as my PSA was rising my GP told me that if he gave everyone my age in my situation a PSA test he would soon be bankrupt and refused - I then got a referral back to the urologists - which took over 6 months to get through and had a PSA test with them which was higher than previously and found I had PCa. I wish I had had a private PSA test at the time as would have had treatment sooner but can't go back.  My Oncology consultant believed I should have been referred for biopsy and scans the year previously when my PSA was lower and probably other treatments such as brachytherapy - which my brother had could have been an option.  I do hope there are no GP's using that one nowadays.  If you have a GP who will give you PSA tests then do go for them and please be evangelical about this and tell all your male friends and relatives to have regular PSA tests.

Hi Paulo100

Many thanks for your reply.

I am similar to you. I do not want hormone therapy and have been advised against radiotherapy due to my relatively young age.

I totally agree about the lack of effective testing/scanning. I did see a news article yesterday about a new multi-million pound research campaign called TRANSFORM. Hopefully there will be better diagnostics in a few years from now.

I am now looking at either Radical Prostatectomy (advised) or HIFU (waiting on referral). London Hospitals are not really an option for me (postcode lottery).

Good luck with CK in January. I hope it's successful and the outcomes are positive.

Best wishes