Ok, so I'm now on the HT/RT pathway ...

Yes when I went to my first walnut club meeting before starting any treatment we were given a talk by someone who had had his prostate removed and then needed RT some short time later.  There is no way I wanted to cope with the extra side effects from Rt after surgery.  Apparently as the prostate is no longer of sufficient size and structure then you are more likely to get collateral damage to surrounding tissue and organs from the RT such as bowel bladder and rectum.  So in the end glad I had to go the Rt route.  My Rad. Onc.. consultant now a professor was quite prepared to do surgery after RT and I believe there was someone on this forum all those years ago who had had successful RT followed by surgery with this consultant. 

No-one can tell you how you will react to any form of treatment or operation as we are all different.  You may not get all the side effects and may have just a few light ones but some people will get the whole shebang big time.  I was lucky in that the HT hardly affected me at all.  I didn't notice the hot flushes until I realised they were gradually disappearing a few months after stopping my 9 months of HT.  ED certainly didn't bother me during the time of my treatment as I had other things to worry about much more important than that.  I didn't really notice much difference in urination - even when going through the RT - I put that down to having the fiducial markers inserted into the prostate to target the RT more effectively.  Where some of my compadres in the waiting room had various bowel problems whilst going through RT I had none at all and just one night when I did have to get up and urinate about 30 times during that time.  OK I exaggerate but that's what it felt like!  It was probably a dozen times.  As for fatigue and emotional swings.  Not too bad but then I did carry on exercising and socialising as normal during all the treatment.  I did fall asleep when watchign the news after lunch a few times and did fall asleep about 8 pm in the evenign when sitting watching tv - that's quite normal now as I reach 80 but still going to the gym and all the things I did at 60 just maybe not so well and a little slower.  I am still not incontinent despite my bladder and prostate and now just my bladder trying their hardest to make me so!

Just remember what ever side effects whatever problems it is all better than the alternative

freefaller said:

Yes when I went to my first walnut club meeting

OOI, is there just one of those clubs as if so I believe one of the main people there was present at the local PC support group I went to and he was a very nice / supportive / knowledgeable person.

freefaller said:

Apparently as the prostate is no longer of sufficient size and structure then you are more likely to get collateral damage to surrounding tissue

Something that doesn't seem to be mentioned very often here is the use of SpaceOAR, the 'polyethylene glycol (PEG) based hydrogel' that I assume is injected between prostate and the other organs to create a safety margin and so minimise the collateral damage?

freefaller said:

fiducial markers

Is this another step that is typically used routinely as they (like Brachytherapy) seem to offer an even more targeted treatment, potentially better for collateral damage reduction? Whilst I get that the tattoo alignment markers would help re the repetition, the human body is a fairly dynamic thing where what happens on the inside might not be mm predictable from the outside?

The telephone consultation that was offered by UCH Oncology was cancelled by them a bit before so I'm not sure what that was about? Maybe a debrief from my abandoned surgery?

There is a Walnut Club at most Maggie's Centres.  Yes they are supportive and it is good to hear their stories.  I was just glad I didn't have the operation first and then had to have Rt after as this guy had lots of long term problems which he willingly shared with us and i am glad I didn't run the risks of being both permanently bowel and bladder incontinent like he was - of course this will depend on where the cancer has spread to as to the extent of side effects.  Just thankful that I am back to normal after all the treatment and had no big problems with the course of treatment I had.  Again not everyone will have this as I said I hardly noticed any side effects from my HT and RT but others will experience a few mild side effects,  Others a couple of bad ones and some the whole lot but mildly and some poor men will have all of them big time.  We are all different.  All the side effects of the HT started to gradually disappear as soon as I stopped the HT and by 6 months were also non existent and then by the 9 month to 1 year time post treatment  had all disappeared completely. 

Fiducial markers are not offered routinely and I had to actively seek out a consultant offering this and then organise a private consultation with him (as he was out of my health authority area and here in Wales if we are offered treatment in our area we cannot go to another area.  He then put forward a case to the Department of Health for Wales so that I could go to him and have my treatment on the NHS with him - which he did.

Space Oar has not been mentioned for a long time - infact the last time it was mentioned on here the person was told it was no longer used by the NHS.  Though I have not found any evidence for this on line.   That is what they were told by their hospital. It was never mentioned to me other than to be told I couldn't have it due to other problems - I can't think what now.  I know I couldn't have brachytherapy all those years ago as I had had a TURP procedure about 8 years before the radiotherapy and at the time brachytherapy was not given if you had had a TURP though I think this is being done now.  I think the fact I couldn't have spaceoar had something to do with my prosthetic hip but I can't be sure and again this may have changed in the time since I started my journey in 2015.

The thing with radiotherapy is that it doesn't stop at the cancer or the organ it is beamed at but carries on through and into the tissue and organs behind.  Proton Beam therapy actually stops at the cancer it is aimed at which is why it is primarily used for cancers like brain cancers and facial cancers in this country.  I did look into having proton beam therapy out in the Czech republic but again that was something they wouldn't give(sell)  me because of the prosthetic hip.   That would have still been a month of treatment as the Rt was but it would have also meant renting a place to live out there as well for the month.  

Thanks again for the full and interesting reply FF.

freefaller said:

I did look into having proton beam therapy out in the Czech republic

Is that simply because it was cheaper than here or that you couldn't get it here (even privately)?

I wonder why fiducial markers and SpaceOAR aren't offered routinely as both seem sensible? Cost maybe?

I know you like investigating different treatments Able

Take a look at IGRT and IMRT  , external  beam radiotherapy using the gold markers, explains how the system work.

More widely available now although I know some centres still don't do it.

U could argue space osr not needed because of this prescion RT unless u already had issues in that part of the pelvic area.

Steve 

Grundo said:

Take a look at IGRT and IMRT  , external  beam radiotherapy using the gold markers, explains how the system work.

I'll check those out, thanks.

Grundo said:

U could argue space osr not needed because of this prescion RT unless u already had issues in that part of the pelvic area.

Except ... I understand you have to have a full bladder for RT to increase the size of the bladder and so minimise the proportional impact of the RT on the bladder.

So they could either do that, or place a physical spacer between the prostate and / or rectum (SpaceOAR) to provide a safety margin etc?

It's sort of the reverse of surgery removing a 'clear margin' of good tissue from around the cancer to minimise the risk of missing some.

When I had my RT I didn't have to have a full bladder, never got a proper answe as to why

Think you have a full/nearly full bladder so that it is further away from the prostate?

Yes, u could well be right

I think it's more to do with size. Say the prostate is the size of a plumb and next to the (empty) bladder the size of a lemon. If you hit the prostate with RT then you will also hit the bladder over about the same area of the size of the prostate.

However, if you fill the bladder so it's now the size of an orange, the amount (proportionally) of the bladder in contact with the prostate will be less, therefore exposing less of the bladder to the RT.

Inflate a balloon and draw round an object on it. Deflate the balloon and the area of the object will be smaller? Now, large or small it will have the received the same dose of RT but maybe the density of that dose (per sq area) impacts the damage in the same way focussing the energy of the RT beam would? <shrug>