Decision time after 3 years of AS

Thanks John. 

I’m 56 and my PSA started at 4.4 gradually rising to 6.6 now. 

Luckily I have insurance through my employer, hence me asking about the Proton Beam Therapy. My concern about that route is, because my cancer seems to be concentrated in the top part, but with lesser amounts showing up in all other areas, might the procedure be too precise and ‘pinpoint’ to zap all these areas? I am worried that they might not see some of it, whereas I am guessing RT is a bit more broad brush, and might stand a better chance of mopping up any of these more equivocal areas. I am showing a lot of naivety about this, as it’s all rather new to me and I don’t want to make the wrong decision. I really would value advice/views from forum members. Sorry for long message, maybe I should have chosen ‘Ronnie Corbett’ as my username :-)

Thanks Chris,

I'm looking for as little discomfort as possible, but obviously balancing that against surety of a good result.

Always going to be tricky, there is no one simple answer.

Out of interest, with your RT, were you offered the protective 'balloon' that goes between the prostate and rectum as part of your treatment?

Chris

I hope the burning pain in your rectum clears up soon, and you can get back to fullest normality.

Chris

Chris,

I am a very satisfied customer of the same surgeon as Nikko, Professor Whocannotbenamedhere.

If you click on my nom-de-plume you will see my account of the whole procedure. I was NHS, Nikko private. I think there is a better wine list in the private sector......

Get yourself a second opinion(s).

Cheers, John.

Edited by member 19 Apr 2019 at 13:51  | Reason: Not specified

The amount of radiation ( 70 Greys Units) is much the same as I would have had with EBRT. Side effects were proctitis, cystitis, some tiredness and other minor things, I suspect a little less pronounced than the EBRT option.

If you are suitable (and I think you may be) it may be worth considering brachytherapy.

John

Don’t let the ‘options if it fails’ thing affect your decision making too much. If your first treatment fails, then statistically the chance of salvage treatment being successful is lower; the most important factor when choosing radical treatment should be “which one gives me the best chance of full remission?” rather than “which one has options if it doesn’t work?” Once you have determined that, the second question could be “can I live with the known and potential side effects of the treatment that gives me best chance of remission?” and if not, “which side effects can I live with while still having a reasonable chance of remission?”

Hi  chris

Just to add neither of our consultants talk about ‘cure’  as they agree there are no guarantees apparently with any primary treatment that you won’t get a reoccurrence. This is just my understanding. 

So both our consultants talk of the ‘trifecta ‘ in PCa being 

- cancer controlled

-  no incontinence 

-  no ED (tablets etc maybe needed)

Some take ED concerns ‘off the table’ as it’s not important to either them or their partner but that’s down to the individual. From my readings all care about cancer control and incontinence however! 

Hi Chris,  probably a bit late for a reply, but I've only just registered.  My husband is 70, 3 +4 Gleason psa 16 and very healthy apart from this shock diagnosis. I've looked into proton therapy & been in touch with The Rutherford in Wales who seemed to know very little,  Essen in Germany who were very knowledgeable and have extensive experience but expensive , and Prague, & after a recent visit there to speak with a consultant, and loads of good info,  we're heading off to Prague for 6 weeks shortly .  The therapy is as previously stated, a more targeted form of radiotherapy resulting in far less damage to surrounding tissues and so cuts out a lot of the associated problems. There is plenty of evidence worldwide that this is proven.   We asked in our only consultant appt here about PT, but were told it cost over £100,000 & not available here & J was offered Op or normal Radiotherapy.   I have no doubt it will one day be available here and Prague receive numerous NHS patients with other cancers for treatment , so why not for  prostate? J has to have maximum treatment at the cost of  £30,000. (Didn't want a motorhome anyway)

Hope you managed to access information before this. All the best.

Yes, with advanced imaging such as PSMA (or even Carbon Acetate PET scans in the future) to identify a hot lymph node, or a hot seminal vesicle remnant, or similar, proton beam is probably ideal, and this may be standard in some years time. Also, it may be usable by those who've had max RT dose in some cases, although not in all cases.

Cupoftea,

I very much doubt BUPA would pay for proton therapy as a primary PCa treatment (and other insurers are even less likely to), so insurance probably wouldn't help you. You can't tell for sure if the cancer is confined until it's removed, and it's quite common for the staging to be upgraded during prostatectomy, and then radiotherapy needing to be done immediately afterwards. With Proton beam, you would be unaware of this until it starts spreading again, requiring salvage radiotherapy, which doesn't have as good outcomes as primary radical radiotherapy. With radical radiotherapy, the immediate surround is treated as well, together with lower doses to any spreading micro-mets, and it's more likely to mop up anything that a proton beam would have missed.

In the future better imaging and cheaper access proton beam could change things, but in the future, there will inevitably be more options. It's always better to get your prostate cancer in the future rather than now;-)

Cancer patients are now being treated using Proton Beam at The Christie Hospital Manchester and before very long will also be treated at UCLH in London. However, unless it is decided to do a limited trial for PCa, I very much doubt that men will be treated for PCa at these facilities because so far experience has not shown significant advantages over the Photon RT widely used in our PCa RT. This is very likely because as Andy suggested earlier in this thread, the Proton Beam having unloaded on the targeted tumor does not continue to irradiate as does Photon RT, so any unseen/untargeted cancer cells beyond are not treated. Where Proton Beam is superior is for treating cancer that is for example in the head, where Photon RT would go on to cause severe collateral damage. Many will recall it was for this reason that the parents of Ashya King took him to Prague for Proton Beam which thankfully seems to have worked well.

Those running the trial I took part in Heidelberg, Germany, thought the best approach for PCa might be to use fewer Photons but to supplement this with a powerful boost of Carbon Ions (similar to Protons but packing a heavier punch). They were also holding trials to establish whether Protons or Carbon Ions would give better results. I am not sure whether these trials are still running and it takes years to really evaluate success against more usual options. But if you can be accepted into such a trial there is a considerable cost saving.

It's not just a question of which is the best treatment because all treatments have their pros and cons but what is most suitable for an individual medically and taking into account his feeling about side affects among other considerations. Not all treatment options are open to all men of course.

Edited by member 07 Jun 2019 at 23:15  | Reason: Not specified

2013 EU trial and 2016 review of 5 existing trials:

Clinical effectiveness
A systematic review which covered a variety of potential indications for proton beam therapy included three randomised controlled trials of proton beam therapy for prostate cancer:
  o The first trial randomised participants between proton beam therapy and photon treatment. There were no significant differences in overall survival, disease-specific survival, total recurrence-free survival or local control between the two arms.
  o The second trial randomised participants between two doses of proton beam therapy. Overall survival was similar for the two groups, but rates of biochemical failure were higher for the low dose group, and more of these patients subsequently required androgen deprivation [the use of drugs to reduce the circulating levels of male hormones in association with radiotherapy is now accepted as a standard of care in some patient groups to achieve best clinical outcomes] in association with radiotherapy for recurrence.
  o The third trial compared five different proton beam therapy fractionation and dose regimes. Rates of biochemical failure were similar in the five arms.

The review also included three non-randomised studies
  o The first study reported quality-of-life data from men who had received either proton beam therapy or IMRT. There were no differences for most measures, but the men who received proton beam therapy had more rectal urgency and frequent bowel movements.
  o The second study compared men who had received IMRT, proton beam therapy and three-dimensional conformal (an older method of delivering radiotherapy that accurately shapes the radiotherapy dose to the tumour) photon radiotherapy. Each treatment had a different pattern of adverse effects, with none emerging as safer.
  o The third study reported no significant differences in further cancer treatment, urinary incontinence, erectile dysfunction or hip fracture in men who had received IMRT and proton beam therapy. Those who had proton beam therapy were more likely to experience gastrointestinal morbidity.

One further controlled study which reported no differences in gastrointestinal or genitourinary late side effects between men treated with proton beam therapy and intensity-modulated photon radiotherapy.

Edited by member 08 Jun 2019 at 01:32  | Reason: Not specified

I’m pretty certain this is a NICE review of trials where they’ve picked bits out of EU trials to make a case for not providing it. Regardless, if you actually read the first half in the stuff you’ve sent, the conclusion is actually that proton therapy in normal dose is equally effective as photon therapy.

The second section on side effects is so vague it is is definitely not the results of a trial it is NICE s conclusion that “each treatment had a different pattern of adverse effects, with none emerging as safer’ - not really a clinical conclusion of side effects is it, bit vague, and if the first half concludes proton therapy in normal dose is equally effective, the main thing people want to know about are long term side effects.

Not really sure why you’ve posted Prostate Cancer UKs stance on proton therapy. If people question nothing in life, we learn nothing, and I’ve never been one to accept what I’ve been told by people with vested interests without a good dealing of digging around for the full story. I also trust to common sense, and it’s telling me that NICE are holding back on this treatment - wouldn’t be the first time, would it.

All the best