Cyberknife treatment

Hi  SJ and welcome.

I don't think that Cyber knife is readily available on the NHS although I believe that Royal Marsden in London has a machine and is available in certain cases.

Also Mount Vernon in West London but when I went there in 2017 for RT, Cyber knife was private only 

It would be worth contacting these two centres to find out more.

If it's any help I was on active surveillance for 4 years and had the RT in 2017.  Fours years later I have no side effects.

Best wishes

Steve

Ok thanks Grundo what is RT by the way

• External beam Radiotherapy , the main treatment apart from surgery.

Surgery and Radiotherapy roughly the same success rates 70-80%

S

Sure radiotherapy would be my choice will see what my next psa value is in June 

S.J. said:

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Hi S.J.

I too have a Gleason 6 prostate cancer. I've been on active surveillance for almost 4 years.

I have researched treatments in case active surveillance becomes no longer possible for me. Cyberknife was one of them. There are some threads about it on this site. Some people have reported success but others have had recurrences.

Proton beam therapy is also available in the UK. It is available privately at the Rutherford cancer centres and I heard the NHS now has 2 machines.

There were NHS clinical trials of immunotherapy but COVID seems to have stopped them for now.

A good thing about active surveillance is that you can wait for better treatments to come along.

All the best

David

Hi David,

Many thanks for the information my thoughts also if on active surveillance hopefully better treatments will become available for us all.

My psa was 6 last time, how is your psa , mine has fluctuated between 4.85 and 6.30, so apparently no cause for concern at present 

Hi S.J.

Same here. My PSA fluctuates a bit.

I've had almost 20 PSA tests throughout my active surveillance. The Patient Access app generates a graph of PSA against time, which my urologist thinks is excellent. The graph shows a general slow rising trend, except for a very big spike after the biopsy. 

When I was in my mid 50s my PSA was around 3.5 on average (pre biopsy). Now, in my late 50s, it's averaging around 4.5. Apparently that's OK. 

I have an MRI every year (non NHS).

Cheers

David

Hi David, thanks for the communication. My psa started at 3.8 about 3 years ago now fluctuates between 4.5 and 6.5 let's say. 

My active surveillance is now 6 monthly psa blood tests. MRI stopped for time being as treats showed no significant change in prostate size and no abnormalities.

My urine flow is as normal and I do not have to go during the night, so I suppose everything is steady.

Plan is if psa test results do no show any significant upward trend  to stay with active surveillance.

Do you eat normally or do you control your diet. Do you still drink alcohol

Hi SJ

I was diagnosed in 2011 and received Cyberknife treatment in 2012 at Royal Marsden Hospital. I didn't go private, I was able to get on the PACE Clinical trial and lucky enough to make it as one of the patients to receive Cyberknife, which was being compared to conventional radiotherapy with a view to having NICE approve Cyberknife as an NHS treatment. 

I had five treatments, each session about 40-45 minutes, over a two week period. I was 55 years old at the time. I continued to go to the gym and work as normal. I didn't have any significant side effects until around 4-5 months after the treatment when I began to experience fatigue and had some urgency issues. But I think you'll find that's normal for radiotherapy. 

I was then put on three monthly cycles for PSA tests and examinations at Royal Marsden for the first two years, then a six monthly cycle up to five years. In 2019 my PSA began to rise and scans showed a very minute recurrence in one seminal vesicle, which hadn't been treated. It happens in about 5% of cases. I had that surgically removed, my PSA dropped back to a very low figure and I now am back to getting PSA tests every 3 months to monitor my situation. 

My experience wiht Cyberknife and Royal Marsden has been excellent. Of course my preference would have been to never have PCa, but the Royal Marsden did an amazing job. Best of luck and if you have any questions about the treatment let me know.

Alternatively you can get in touch with the people who manufacture Cyberknife, they are based in California and they do have some excellent videos on the treatment and respond to questions directly.

RJP