Proton Beam or Radiotherapy

Hi, Steve.

I'm sorry that you've joined 'The Prostate Cancer Club.', but welcome to the forum.

Here's part of what they NHS say on proton beam therapy

Proton beam therapy is only suitable for certain types of cancer, such as highly complex brain, head and neck cancers and sarcomas. It does not lead to better outcomes for most cancer cases compared to using modern high energy x-rays, which is still considered the most appropriate and effective treatment for the majority of cancers.

https://www.england.nhs.uk/commissioning/spec-services/highly-spec-services/pbt/

As far as I can recall I believe there has just been one bloke on here, in the past three years, who mentioned proton beam treatment and that was done abroad?

Back when the private Rutherford Cancer Centres were running in the UK, we had a talk from a local oncologist. He had been sending private patients who wanted proton beam to them, but had stopped doing so, because the results were not as good as standard (IG-VMAT) external beam radiotherapy. He wasn't very specific but said this was in terms of both worse outcomes and worse side effects. (The former Rutherford cancer centres have been bought and are now reopening, but they won't be operating the proton beam facilities, which probably also speaks volumes.)

The theory about proton being better due to the Bragg Peak effect (reduced entry wound and no exit wound) is all nice in theory, but the proton centres never completed any randomised control trials which demonstrated any benefit. (The US centres kept publishing papers showing how much better their proton beam was than much older non-IG IMRT external beam radiotherapy which we hadn't used in this country for years, but that had no validity for us here, and I doubt the US was still using non-IG IMRT external beam either.) NHS looked at the results of many international proton centres in 2016 to decide if they should offer it for prostate cancer, and also found the results in terms of serious side effects worse than the then latest standard external beam radiotherapy in use in the UK, so the NHS decided not to offer if for prostate.

It did strike me that proton could have been good for salvage treatments - zapping the odd lymph node or bone met, but the proton centres were never interested in that - they wanted the high volume bog-standard treatments which were more profitable. With standard LINACs now also doing SABR, SABR has taken the salvage treatments.

Proton is excellent for many other rare cancers, but it's never proved itself superior for prostate cancer.

Steve, you're G9, though you haven't given any other details of your diagnosis and those could be critical to deciding your treatment. 

While it might be tempting to go for the least challenging treatment first up, that's probably not going to be the best long term. Your first  treatment is your best chance to get rid of the cancer and keep it away for many years.

I can't imagine why a hospital would only give you negatives about radiotherapy when it's a good option and sometimes the best option.

Sometimes with older patients [I'm 79 and had RT/hormone therapy for a G9 cancer about 5 years ago] there's a risk that they'll suggest hormone therapy or factor in the thought that "at your age" the treatment isn't quite so important.

Andy's advice is always good.

Jules

Hi Steve,

You're right it can be very overwhelming, you get told you have cancer, then there's the realisation of all the side effects associated with the various treatments.

If it helps, I chose the RT/HT route plus brachytherapy which I was offered in addition last minute so extra radiation. I was offered surgery but told it would be none nerve sparing and would very likely require salvage RT later so that was a definite no for me!

I've not had any incontinence or urgency for the toilet and so far the only ED is a result of the HT which will hopefully wear off once my testosterone returns. I do also have a slightly reduced wee flow, starts of fine but kinda trails of a bit towards the end. It doesn't bother me, and I've been prescribed a daily pill of tamsulosin which helps too

Erections are still possible but I'm less enthusiastic about them due to lack of libido. It would be worth asking about tadalafil, it's like viagra, but you take a small daily dose to help maintain blood flow and avoid atrophy. Also a vacuum pump can help to avoid atrophy too as you'll find you no longer get night time erections. Both are available on the NHS. ED can develop over time due to radiation, but isn't guaranteed.

Keeping active also helps, I joined a cross fit club after a feebie 12 week course through Battle Cancer, something I would have ever considered doing prior to all this, it's surprisingly good fun!

Hopefully my message is reassuring rather than adding extra fear! 

I was diagnosed aged 48 (T3b Gleason 3+4) and have just finished my 2 years on HT, feeling positive about the future.

All the best John

There's a risk of ED with any treatment (and also with Active Surveillance). Generally speaking, it's highest with surgery (and even higher with surgery followed by salvage radiotherapy). However, there are things about your anatomy and the location of your cancer which can significantly sway that. It's certainly not zero with radiotherapy either.

I can't see that you've mentioned your diagnosis other than Gleason. It might be useful to know staging and PSA. It might be that a treatment such as HDR Boost (50% dose of High Dose Rate Brachytherapy plus about 60% dose of external beam) could be a good fit. [Disclosure] it's what I had, and it seems to have good results for high risk contained (up to T3b) disease in terms of outcomes and side effect profile considering how high a dose it gets into the known cancer.

When you speak with clinicians about treatments, make sure you are speaking with the clinician who does that treatment. You don't get useful information if you speak with a surgeon about radiotherapy, for example.

It is sad to hear that 

glad you are still finding options and that you have an understanding partner 

it’s not something we want as men so

i’m trying to hang onto whatever chances I have 

I tried a few pills before any were prescribed to me, I found Viagra did nothing for me. The problem is it requires you to be turned on, which is difficult when you're in a constant state of worry and have you libido suppressed by HT!

The tadalafil is more to help maintain blood flow to that area rather making it look like you're very very please to meet everyone. It's maintenance, along with the pump, through the dark days of the HT .

If just EBRT is suitable to put you on a curative path that's great news. Brachytherapy is targeted but combined with EBRT very much ups the odds of ED. Mind you two years after my main treatment and whilst still on HT I am still able to perform so to speak, with a little help from the pump to get things going. Shall see what the future brings, the main thing is I'm still here, hopefully for a long time!

Well done on the yoga and Pilates, I'm sure keeping as fit as possible helps both physically and mentally

I bought a few boxes of tadalafil from an online pharmacy (20mg tablets), not cheap. But they did have the bonus of having break lines in them so you can easily quarter them into 5mg doses

When I last looked, Christie proton system didn't offer prostate cancer treatment, NHS or private.

UCLH doesn't but a private company Proton International does do it at UCLH.

I think the Rutherford Cancer Centres expected to pick up a lot of NHS work, but that mostly didn't happen (and none at all for Proton Beam as far as I know). I vaguely recall they did build a centre for one health authority, which took it over when they went bust, but that wasn't a proton beam centre - I think it was some outpatient cancer services. I suspect they also expected to pick up a significant volume of private proton prostate cancer treatments, and I don't know to what extent that happened, but I never came across anyone treated there except the one patient who used to go around giving talks about it.

Edited by member 07 Sep 2026 at 10:00  | Reason: Not specified

Yeah thanks there is a place in Nottingham does it Genesis I think and London and also Bristol  

Hi Steve

PTB is available at UCH privately.

I don't know if its available on the NHS

Regards

Al