Proton Therapy as an alternative to Photon Radiation Therapy

Hi Crippo2 .

No views personally without further study. This is what PCUK think.

https://prostatecanceruk.org/about-us/projects/proton-beam-therapy

The main issue in the UK appears to be cost and limited availability. This got me thinking about other focused therapies in the UK such as hypofractionated SBRT which is a lot quicker and has similar outcomes in the prostate cancer situation, plus it is available on the NHS in some areas. I cannot find anyone on the Macmillan site who has had proton beam therapy.

I have found these personal experiences in the UK.

https://community.prostatecanceruk.org/posts/t15842-Proton-therapy-is-the-Best

All the best with your deliberations.

Hi Crippo

I don't think there are enough stats to know if works as well as Radiotherapy, obviously still relatively new.

I do remember when I was having RT in 2017 I got chatting with another patient in the waiting room and he seemed to know quite a bit about  PB  but didn't seem that keen although didn't elaborate too much.

In your case with a T3 where it has broken through the gland edge u may be better with the tried and well tested , good old Radiotherapy.

Just my opinion, see what others say.

Best wishes 

Steve 

Cost is correct. Rutherford closed - NHS say no need fpr more proton treatment centres as there is surplus capacity from the 2 existing centres. Of course there is if you refuse to treat eligible patients! Most NHS information is very out of date and seem designed to justify refusal.

I looked into SBRT from Genesis in Oxford. They blew me off - their MRIdian system can only irradiate the gland not the pelvic nodes  And very high intensity radiation without absolute active precision does not fill me with joy.

Yes beware of Prague; there have been some bad experiences.

Proton has been around for Prostate cancer (including Seminal Vesicules & pelvic nodes since before 2000 (When Bob Marckini had his proton treatment. His book has outcome compaisons between Proton and Photon, including, cure longevity and cancer return rates, all of which strongly favour Proton. (see tables on pp 214 & 215 for starters)

But trearments move on over time and the Varian Truebeam kit is apparantly a wonder to behold.

Essentially it mostly comes down to a cost benefit analysis. USA is upto $80k, Germany Euro 70k & UK is some £50k all plus living costs

For me it really is all about the side effects rather that the base treatment, which I presume and, until told otherwise, will cure me.

Thanks for your response

Crippo2

Thanks for the very informative response. Interesting about the refusal to use SBRT for pelvic lymph nodes. My husband has had 10 abdominal lymph nodes plus spots on both adrenal glands treated on a VERSA RS Linear accelerator with VMAT- IGRT and abdominal compressor and at the moment all is going well. We have been assured that it is very accurate provided all the precautions are taken and we choose a hospital which has a proven record in using this machine - but we live in Greece so maybe different protocols and different machines.

Glad it all seems to be going well. The secret with advanced machinary seems to be the processes and procedures rather than the skill and experience of the technicians.

fingers crossed for you both!

Crippo2

Photon therapy has been in use for Prostate treatment from at leaset 2000, with over 14k members of ProtonBob.org eulogising about their treatment. There was a small trial in 2018 which reported much improved success using protons over photons in relation to treatment for gland,seminal vesicles and nodes. Proton therapy is not known to facilitate reoccurence many years later, in the way Photon treatment can.

I have been advised that 4 weeks of proton treatment in UK will be sufficient to sort me out (once they can get authority to proceed)

Having said all that I am immensely persuadable that Photon treatment will work OK for me, I just need reassuring that the latest kit will be available for me, with minimal exposure of healthy tissue.  Certainly the Varian Truebeam kit offers much of that

lets see how it all pans out Friday with a likely treatment plan.

Crippo2.

I travelled to Prague to consult with the proton Beam Team before starting my RT but they wouldn't treat me because I had a right hip replacement so they could not use Proton Beam.  I was upset so set about finding a good centre to have my treatment here either privately or on the NHS.  I did and had the following treatment on the NHS:  I had fiducial markers implanted (three tiny gold seeds about the size of grains of rice) to help target the RT which were implanted at the time I had my planning scan 2 weeks before I started 1 month of RT on state of the art machines.  That was over 8 years ago now.  My Stats were PSA 13  T2N0M0 but T3 disease could not be ruled out as the MRI scan showed that the tumour was close to the wall of the prostate and some cancer cells could have escaped which may have been too small to show on the PET Scan so I was advised to go ahead with RT to treat the whole area.  Not long had another PSA test and everything as it should be and as my urologist and Rad.Onc. promised for me it has been the cure they were sure of - though every annual PSA test makes my wife very anxious.  I also consulted with Dr Nicholas Van Ass at the Royal Marsden to see if I was eligible for Cyber Knife Treatment but he advised me I would be better going with RT - that incidentally was the most expensive private  have ever paid privately for at £600.  Though I supposed with the travel to Prague that was pretty expensive too!

Since my successful treatment I have met one person locally who did have Proton Beam treatment for Prostate Cancer and he had the long term side effects I was hoping to avoid problems with urination and bowel movements and long term incontinence with both.  I did avoid those side effects so maybe not always as good as it is cracked up to be.  Though as every one will tell you all the treatments are progressing so the Proton Beam therapy and delivery of that therapy has also progressed in those 8 years.

Good Luck