RT, 'down in the noise ...'

Hi Able, can't answer all your questions, and can only comment on my experience, I'm T4 incurable I've had 6 session of RT to shrink the prostate, which worked very well allowing me to P properly for almost a year.

I do have ED as a result of taking hormones my main treatment, but neither my wife or I are bothered by this, the treatment is keeping my alive very successfully.

Hope you get the answers to your question. Soon.

Hi Able

Looks like your main question relates to side effects of RT.

My only issues were constipation and difficulty urinating, took meds for the constipation which helped to an extent, didn't bother with meds for the urination.

Problems started about 2 weeks into RT and finished about 2 weeks after treatment finished.

From what I can see RT the easiest treatment plan, no anaesthetic, just lie on  a couch ,  have a machine swirling around you,. easy.

I'm sure that you will be fine with the RT, nothing to worry about.

best wishes

Steve

HI Ulls, thanks very much for your reply, sorry to hear of your situation and glad what you have is working for you both now.

I was asked at the PC group meeting recently how I was impacted re p'ing etc and I replied I was able to fairly reasonably (T3a, ok, I can't go up a wall or write my name in the snow any more) and I might only need to get up in the night every other night etc.

In contrast to you and your situation, I'm pretty sure both of us would very much miss 'it', even to the point (for me anyway), where (and given our position with her dementia and so our predictably questionable lifespans anyway) I might rate it higher than life itself, especially if we are talking ~5 years or so. I mean, whilst without it I might not be dead but it would likely feel like it. But 'different strokes for different folks' as they say (excuse the pun). ;-)

HI Steve and thanks for the feedback.

I think I could deal with any short term negative side effects of RT if I didn't have to suffer the very immediate side effects (especially pain / catheter ...) of surgery.

On the actual RT process, what do you typically wear, do I take all these pyjamas I've bought ready for surgery back to the shop? ;-)

Hi, 

I had HT and RT back in 2016/17 at the age of  72/73.  I had a PSA of 13, Gleason Score of  7 (3+4) and staging of T2 N0 M0 - though T3 disease could not be ruled out as the tumour was near the margin of the prostate at the back nearest the bowel and the urologist was concerned that some microscopic cells could have escaped the prostate which would not have been visible on a PET Scan.  Therefore HT and RT was considered the best treatment as it would treat the whole area including any areas where microscopic cancer cells could have escaped.  I already suffered from a weak bladder and had had surgery for a fistula in my back passage which meant that any collateral damage from RT could mean problems with both bladder and bowel.  to this end I sought treatment at a University Hospital with a Consultant Rad.Onc - now a Professor, who specialized in RT using fiducial markers small gold seeds about the size of a grain of rice inserted into the prostate around the tumour to help with targeting the RT.  This was done about a month before the start of RT under anaesthetic and whilst being scanned to place the gold markers in the correct place.   This was a quick procedure and was no worse than the biopsy - in fact probably better because I don't remember having any problems with passing urine afterwards.  I was on HT for 9 months only and started my RT after being on HT for 6 months.  As far as HT was concerned I hardly noticed any side effects - though I did have a few hot flushes (more noticeable when they actually stopped as I hadn't really noticed them during treatment) and some fatigue and did gain about 4 to 5 lbs but I continued to be as active as before and went to the gym as normal - almost every day usually but at least 4 times a week and I credit this with keeping my side effects to a minimum.  I did quite often fall asleep when I sat down after lunch and then again after dinner in the evening but that's all  I had one night during RT when I was up passing urine practically all night this was about half way through the 20 sessions.  Other than that nothing to speak of.  I did have some problems with bowel movements about 6 months post RT but this could also be put down to the fact that I had some polyps removed probably too soon after the RT.  This settled down within 3 months with medication.  I am still cancer free and have been given what my urologist assured me at the time was a "cure" though every time my annual PSA check comes around we both worry.  I started out having a choice between removal and RT but then when the MRI showed the position of the tumour my urologist came down quite definitely on the side of HT and RT.  He was also worried about the effect the removal operation would have had on my bladder - so who knows maybe by having to have HT and RT I missed having an even worse set of side effects - though my first reaction was "CUT IT ALL OUT!  GET RID OF IT! "

I continued to go to the gym all the way through my treatment and was free of any side effects from the HT and RT including ED within 9 months of the treatment.  I did a 30 mile cycle ride for charity 2 months after completing RT.  I was actually quite concerned that my testosterone and libido recovered so soon as for a short time it made em think the treatment hadn't worked - stupid me it has worked extremely well.

There is a thing called "space oar" which can also be used to lessen the risk of collateral damage to other areas from RT but not recently heard of many people who have had this but worth researching.

All the best to you.

Probably wear anything except pyjamas for RT able, 

Seriously, just casual will do.

Steve 

Thanks for that lovely rendition of your journey FF.

I think what I like to hear (I think we often look for a confirmation bias when making such choices but also like to be aware of any big 'gotchas' along the way) is that in spite of your additional risks and problems, things seem to have turned out for the best and without having to suffer some of the more predictable side effects of surgery.

I'm not sure I could get back on my solo or tandem cycles, or even a motorbike yet as I still seem to be uncomfortable from the biopsy's?

I think I have read about some form of gel (is it) that can be introduced between the prostate and other organs (bowel / bladder?) to create a 'safe(r) working margin' to minimise the damage from RT overspill. I think this then dissolves away in time?

It's especially reassuring to hear your libido was also fighting fit, something that one might only really understand / miss if you had a healthy and active one in the first place.  ;-)

Cool, thanks. That's a ~£100 I can get back and spend on more interesting stuff. ;-)

The gel is I believe called spaceoar don't know whether there is a space between the words or not.  It was available on the NHS but I haven't heard of anyone having it recently and one person was told it was no longer available on the NHS but I couldn't find any facts on either the NICE or NHS websites at the time to confirm this.  I know that the fiducial markers that I had are still available but not everywhere which is why I had to travel to a University Hospital and the consultant put up a case for me to have this as the hospital was outside my area - in Wales this matters as really I should have stayed within my NHS area and had the treatment available there and this one was not.  I was told after my first consultation (which I paid for privately) with the consultant by his secretary that if he said he was going to get me this treatment there on the NHS then he would do and she was right.