Proton Beam?

Best of luck.

Cheers, John.

As T3a, the cancer has broken out of your prostate, which means prostatectomy alone can't cure it, so you would need radiotherapy in any case. You probably will benefit from the entry/exit wounds of the external beam RT, because those help to mop up micromets (spread that's too small to see on scans) near the prostate. The radiotherapy will be directed at pelvic lymph nodes too in some cases, certainly if any spread there is seen (you haven't said), and also if they think there's a chance there might be micromets in them. This is variously called "whole pelvis radiotherapy" (although that means something else to radiographers), or "prostate and nodes".

I'm not telling you to have that course of treatment - you should discuss options with your oncologist, but given what you've said (which is not complete, missing PSA results/dates, nodes and bone scan results), it is probably the best treatment available at the moment. You might also be offered chemotherapy which can further improve outcomes in some cases, at the cost of more initial discomfort and the risk of some permanent chemo damage to your body.

I am on the same path as you, 2/3rds through my EBRT, to be followed by HDR Brachytherapy (the order doesn't matter). This is becoming a common choice for what's referred to as high risk patients, i.e. T3 or more, or PSA > 20, or Gleason >= 8, as the trials which started well over 10 years ago have had good outcomes.

You didn't say what your PSA was before treatment. Mine was 57. I put off the RT until my PSA dropped to 0.1 on HT, because this also has been found to improve outcomes. (Actually, I was down do 0.18 when the RT was booked and 0.12 when it started, but that was near enough - they were originally going to start it when I was around 5.) Not everyone will be able to get it that low, but whilst the rate of decrease is high, it's probably worth waiting longer before starting the RT.

Kevin, I am similar treatment plan to you, except mine is nearly finished.

G9, PSA 27 and T3b , spread into seminal vesicles as is common. 

HT started in Jan ‘18 , HD Brachy in July and followed by RT 23 sessions. Just 5 mins ago had my penultimate Prostap injection. Last in October. PSA at last count 0.08 so fingers crossed.

The HT is a bit of a mine field for most but it does a job. Look up my previous posts to see my troubles with HT.

I will be looking over my shoulder for years to come but at least I’m alive.

Seems to be becoming the most used treatment plan ......

Good luck on your journey.

Phil

Firstly can I say that I am totally against limiting treatment options on cost grounds.

This TV program was broadcast earlier this week which I think highlights why Proton Beam is unlikely to become a mainstream treatment option in the near future.

horizon-2019-5-the-250-million-pound-cancer-cure

Alan

Edited by member 26 Jul 2019 at 10:43  | Reason: Addition

Alan,

Couldn't get your link to work. Did you check it does? I think you meant this https://www.bbc.co.uk/iplayer/episode/m00072kd/horizon-2019-5-the-250-million-pound-cancer-cure

Treatment within the NHS  is provided on a cost=benefit assessed basis, funds being limited.  Where patients are prepared  to pay for more exotic treatment, private facilities are more readily found, mostly abroad.  The prime example of this is in the USA.  If we didn't have a NHS in the UK there would almost certainly have been more advanced facilities built privately because of greater demand.  As it is, the Proton beam facility now operational at The Christie in Manchester and the near ready one at UCLH in London are years behind those operating in some other European and further afield countries.  Also, these are only able to treat with Protons whereas some of those abroad  can also treat with Carbon Ions  and potentially other atoms. So the UK is not only late to the party but the two facilities in the UK are limited in what they offer.  The Heidelberg Ionbeam Therapy Center (HIT) in Germany for instance  puts this into perspective as here https://www.youtube.com/watch?v=LeApaY7ctMo

For many years mainly suitable young people with tumors in their head were sent to the USA for Proton Beam treatment because it causes far less collateral damage than Photons but this advantage has not been shown to apply for Prostate Cancer.

Edited by member 27 Jul 2019 at 01:48  | Reason: Not specified

Hi Lyn,

Further to my RP a year ago, I was left with 32mm of positive margins around the bladder neck area. Have been having quarterly PSA tests, the last one came back at 0.10  My consultant has now arranged for me to have a consultation with an oncologist, as he ' fears there may be some residual disease' (as stated in a letter to my GP).

I will be speaking with the Onco this week about possible treatments. My consultant has arranged for another PSA test (at 6 weeks from last one), to see if any further progress, and if so then a PSMA PET scan will follow.

I would like to investigate if proton beam therapy would be a more successful, less damaging option, and I will be speaking to the Rutherford Cancer Centre people once I have had the Onco consultation.

I'd be keen to hear any further opinions/thoughts since your comments above from a year ago.

Many thanks,

Chris

Edited by member 22 Jun 2020 at 18:49  | Reason: Not specified

I loved the report about what was needed at the Christie - the building had to be underpinned with 000s of tonnes of concrete to take the weight of the machine and a special sub-station was built to provide enough power!

I keep an eye on proton beam, mainly because people ask me about it!

All of the comparisons are comparing image guided (IG) proton beam with non-IG photons. Well, no one does non-IG photons in this country now. If the proton beam vendors can't produce a compelling advantage without having to compare with 5+ year older photon technology, that doesn't bode well. They did have IG earlier, but so does all photon beam treatment now.

Went to a presentation by an oncologist who used to send some of his private patients for proton beam, but he's stopped doing that. He wasn't very specific as to why, but I would have to assume the results were no better.

I followed a twitter conversation between several urologists who do salvage prostatectoies and proton beam treatments are now working through into their cases. They have already found that salvage prostatectomy is more difficult with hypofractionated photon treatment (more fibrosis around the prostate). Proton beam is much worse still, with it being much more difficult to dissect out the prostate from adjoining tissues. (One of them had done salvage RARP after a heavy ion beam, and that was worse still.) Another factor is that neighboring organs do end up damaged. The bladder in particular loses all its elasticity near the prostate, which means the lower section often has to be removed to reach bladder muscle that can be used to suture the urethra back on. This is not the case with regular photon beam radiotherapy. This was explained by one of the contributors as being due to proton beam treatment being very powerful at the edge of the target treatment volume, in contrast to regular photon beam radiotherapy which is most powerful in the middle of the target treatment volume, and decays away as you move outside of the target treatment volume.

While I share the view that it might seem to be most useful for salvage treatment (where it's not used as far as I know), it doesn't seem to be significantly better for radical treatment. It might have had a window where it was better 5+ years ago, but photon beam radiotherapy has been advancing very quickly.

Edited by member 14 Aug 2021 at 01:28  | Reason: Not specified

Actually IMRT and IGRT (Image Guided Radiotherapy) has been available for well over 10 years at some hospitals but what has changed is the type of Linac depositing the beams.  The Phillips system referred to in the link seems to be similar to the 'Rapid Arc ' system introduced a few years ago by Varian.  We have had members treated with the rapid arc system as shown here. https://www.varian.com/about-varian/newsroom/press-releases/varians-rapidarc-radiotherapy-technology-enables-pioneering

So if you had treatment using the Phillips system you linked to you would be treated with an advanced system.

I haven't heard of the combined MRI and treatment linac being available in the UK, although it was referred to on this forum quite some time ago, probably in use in the USA. I know they administer one of the forms of FLA there whilst the patient is in the scanner which they describe as 'in bore', so another form of treatment used in conjunction with MRI. As I said in another post, introducing advanced equipment and means of treating Cancer in the UK, sometimes lag behind the USA and some other European Countries.

Paul Strickland is just the scanner centre - they do CT, PET, MRI scanning (and maybe stuff I don't know about too). They can do Nuclear bone scans, but MVCC usually requests full body MRI scans or PET scans instead which they regard as better. They only do Nuclear bone scans when it's required as part of a multi-site trial protocol.

The LINACs are all part of the Mount Vernon Cancer Centre - also on the Mount Vernon Hospital site, but separate organisations. The Mount Vernon Cancer Centre and Paul Strickland Scanner Centre work closely together, although the Mount Vernon Cancer Centre also has its own MRI and CT scanners for RT planning.

Planning is underway to move the MVCC to a new purpose built building at the new Watford General, with the LINACS being dispersed more across the catchment area, probably a couple of new ones at Luton or Stevenage, one (the newest) staying on the existing Mount Vernon Hospital site, and new ones at Watford, including an MR-LINAC, and the Cyberknife and brachytherapy suites which are MVCC specialities. Splitting up the LINACS is because of the excess travel times from patients further from Mount Vernon, but they will all be run from MVCC on site at Watford General. Provision will be made for the Scanner Centre to move to Watford too, but Paul Strickland is a separate charity so it will be up to them if they want to. If not, a new scanning facility will be needed colocated with MVCC. MVCC on its new site will also take on specialist blood cancer treatments, which is something it doesn't currently do but will be able to once it's on a site with acute (A&E) facilities.

I wonder why Britain, the fifth (or sixth?) richest country in the world has inferior proton beam capability to the formerly communist countries Poland and Czechia?

One might also question why our ‘world-beating’ NHS has less doctors, CT and MRI scanners per head of population than most Western nations.

Get rid of all the clip-board wielding pen-pushers on £160 grand salaries (never to be seen at weekends), and put someone from Tesco in charge of the whole bloody NHS, and remove it from political control.

Cheers, John.

Edited by member 18 Aug 2021 at 04:01  | Reason: Not specified

There are probably several reasons for this John.  The cost of labour is a lot lower in these former communist countries and as well as treating their own people, these facilities serve as magnets to attract people from abroad due to relatively lower cost of treatment.  Also, this is helped to some extent by location, being in a large block and where the cost of accommodation is not exorbitant. Actually, the same has happened with dentistry.  A number of these countries, of which Hungary and Czechoslovakia and to lesser degree Poland have also become successful in Dentistry and in particular dental implants which are a lot cheaper than in many other countries.  So the question really is why in terms of equipment we lag behind countries like, Germany, France, Italy, The Netherlands and a few others.  I have to say here that I think most people understandably prefer to have treatment at no cost at the point of need or having paid contributions for the NHS want to then pay additional treatment costs for private treatment.  Furthermore, private treatment has not developed for many years to compete with the NHS on a sufficiently wide basis.  It still can't do all the NHS can on a wider front so sometimes patients have to be treated at NHS facilities regardless of means or insurance cover.  Then the NHS doesn't have the means or skill base to cover for all basic treatment adequately or at reasonable cost, the reason why I had most of my dental implants in Hungary.  The idea that the NHS was filled with unproductive pen pushers was suggested recently on a car forum I am on.  Figures were produced to show that other leading European Countries spend more per capita on health than the UK and that productivity actually increased with more managers. With few exceptions, You can get almost any treatment you want in the UK now as long as you or your insurers are prepared to pay for it and accept that some of it might be in a hospital that is generally a NHS one. 

Good luck with your treatment at the Singleton. A couple of family members received treatment there a few years ago and it had a good reputation at the time. I cannot comment on their radiation treatment though.

Re the proton therapy I was swayed by a book by Bob Marckini which was very pro proton therapy. Needless to say I wish I had never read it.