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User
Posted 07 Jan 2016 at 09:42

As some of you may know from previous comments in posts I was diagnosed with localised PC in September, Gleeson 7 (4+3), PSA 4.6 - see my profile for more. I opted for RT having decided the risk of incontinence from surgery was something I didn't want. My brother followed this route a couple of years ago (and got the all clear at his annual checkup last month) and we do seem to following mirror image paths. Have been on Prostap HT since October and second 3 month jab due next week, also on Tamsulosin.

Yesterday I had my preparation CT scan. This took rather longer than it should as he had to have 3 goes at the scan with me going to the loo to try to clear my bowels. So after 2.5 hours I had probably had my yearly dose of x-rays, but he got a good scan in the end. Came away with three little tattoo marks for the alignment. I am a bit puzzled that for these CT scans they want a full bladder so I ended up drinking 5 cups of water while I was there, but the bowels need to be totally empty - this didn't seem to be an issue when I had my MRI scan nor for that matter with the bone scan when I had to empty my bladder before the CT bit.

Maybe not a good sign, but I had a lousy night's sleep last night. Maybe my mind was active from all the days events, but I couldn't sleep and when I went to the loo (which I do anyway far too often) I could pass very little. It seems to be getting back to normal now, but I had a similar effect after my bone scan CT so is this a side effect of CT or is it rather more that the kidneys go into shock for drinking so much water in a short time so turn off?

I gather I will have to drink the same 3 glasses of water before each RT session so maybe this is a foretaste of things to come. First session of the four week course is on Jan 21st. At least I am very fortunate here, the RT clinic is just 5 minutes walk down the road, none of the long drives which many have to do. But if I do have retention issues A&E is a lot further away.

I will keep you posted on progress as it happens.

Dave

 

User
Posted 19 Feb 2016 at 19:45

The tattoo marks are indeed very small, I imagine they may be hard to see on dark skin. Don't worry though, I am sure they will see them. Each day they add further marks with felt tip there and a couple of inches below on each side, presumably so they can clearly see them when they align the machine. Not sure what coloured pen they will use for you though. Usually they doodled in black felt tip but one day it was bright red - scared me somewhat next morning as I thought I must have cut myself!

User
Posted 19 Feb 2016 at 19:50

That might just be a local thing at your hospital Davews .... they never drew anything on John!

Sofijoan - I wouldn't worry about it - they are well practised in their stuff and will know where to look :-)

Edited by member 19 Feb 2016 at 20:55  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 07 Jan 2016 at 10:25
Hi Dave

This was my experience with RT:

I had 37 sessions of radiotherapy and apart from the early start and the travelling it wasn't a problem. First I had to have a scan where they check the prostate and make 3 small tattoos so they can target the PCa correctly. They ask that you empty your bowels before hand and drink a bottle of water about 45-60 minutes before.

The radiotherapists were very good and told me well before hand when to drink the water so I wasn't waiting too long after having it. One thing I learnt from other men having the treatment was to take a bottle of water as the water in the drinking fountain was far too cold.

The treatment apart from dressing and undressing didn't take too long, about 2-3 minutes on the table. I was told that I might get some soreness at the rear end and to get some aqueous cream to relieve it. Fortunately I didn't get much soreness but the cream did help.

Hope all goes well, keep us all informed as you'll get a lot of help and support here.

Best wishes, Arthur

User
Posted 07 Jan 2016 at 11:19

Thanks for the posts Dave and Arthur.
My planning scan is March 4 th. All the best
Chris

If life gives you lemons , then make lemonade

User
Posted 07 Jan 2016 at 20:59

Dave, the full bladder lifts the bladder up out of the way of the prostate and the empty bowel goes flat and away from the prostate. Each is for the purpose of moving that organ out of the way of the radiation and accidental zapping. Some people have to drink less water (if the consultant wants the bottom of the bladder to be included in the zapping because there may be some spread there) or have a slightly fuller bowel to push the prostate up. Getting the position right is most difficult at the planning appointment - once you have your tattoos, it is a quick job for the RT team to line you up each day.

If your kidneys go into shock after 3 cups of water, how do you ever manage to go out for a pint or eat a bowl of soup??? More likely to be psychosomatic I think?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2016 at 10:44

Thanks for the explanation Lyn, seems to make sense. As far as I know my cancer is confined to the left node so the bladder will need to be far out of the way... and if I can keep my bowels moving and not have periods of constipation like I have been then the side effects on the bowel will be lessened.

Very rarely go out for a pint, once a month at the most, certainly meet today's new guidelines..... I was rather saddened listening to You and Yours the other day when they had a phone in about alcohol consumption, it seems there are a lot of people out there who drink like crazy and glad I have never been among them.

User
Posted 31 Jan 2016 at 09:32

Well now one third of the way through, 7 sessions done out my 20 total. To some extent it has gone well, getting well into the daily routine, some sessions delayed for various reasons but others spot on time. Friendly helpful staff and a good bunch of fellow patients in the waiting area, we are getting to know each other well.
No problems with the water works, which is good as I thought I might be affected in that area, but good flow and not too many night trips for that reason. But I seem to be heading for bowel issues - last week had diarrohea and the specialist nurse told me to stop the laxatives. That seemed to sort it out for a while but yesterday had bad flatulence and tending to diarrohea again last night. I suspect it will get worse. I also have problems getting gas out of my system for the treatment sessions and a couple of times I have had to go for a short walk to clear it before I got on the table for a second go. Thursday this led to my bladder being 'too full', on Friday when they were actually running ahead of time my bladder was not full enough so it seems you can't win.
One thing seems certain, these 20 session treatments are going to finish a lot earlier than those of you on 37. On Wednesday I shall be able to say I am half way through!

Dave

User
Posted 31 Jan 2016 at 09:46

Hi Dave, glad things are progressing ok on the RT. I had the full 37 sessions and one of the side effects was very loose bowels in the morning (particularly loose) and wet f***s so to prevent accidents I did not even try to let a "quiet one" slip out.. I also had to wait after the sessions and go for a wee before attempting to drive home and even doing that I was having to stop in layby's or pubs in a desperate state.

like you I made good friends with those that were waiting for their treatment, we became comrades in arms and shared our experiences and treatment plans. I was at the new oncology centre at Worcester Royal Hospital and the staff were fantastic and always friendly even getting a cuppa when I got there before any of the staff one morning.

People complain about the NHS (me included) but I can honestly say that every single aspect of RT treatment went fantastic.

Best of luck with the rest of your RT Dave

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 31 Jan 2016 at 10:10

Hi Dave,

When I had my RT back in 2009 my hospital were keen that I went on a low fibre diet, to minimise the effect of radiation on the bowel and prevent loose bowels and wind etc.

It is fairly easy, you just need to stop 'healthy eating' for a few weeks, cut out wholemeal bread, brown rice, green veg, fruit and salads.

You should eat white bread, white rice, pasta, with a little chicken and fish etc.

The diet sheet they gave me specifically recommended Jaffa Cakes!

:)

Dave 

User
Posted 31 Jan 2016 at 13:21

Well I am giving the low fibre diet a go. Didn't have my bran flakes this morning (just cornflakes) and no onions in my mince this lunchtime. Choice of veg is a bit harder since I rather like peas and although I also like carrot I don't particularly want them every day. Whether it will make a difference I don't know but the bowels seem a bit better at the moment. I had a short time of the 'wet f***s' one day last week but thankfully that was a one off.
I agree, I have no complaints with the NHS and in all the hospitals I visited the service and support was excellent.

Dave

User
Posted 19 Feb 2016 at 08:23

Finished the 20 sessions on Wednesday, it seemed to go like clockwork towards the end having obviously sorted out getting my bowels and bladder just right for them. They certainly seemed to be having problems with their machine, on some days they had to reboot the system leading to delays of up to half an hour - and at the end of one of my own sessions they all swarmed into the room at the end and were so involved in twiddling knobs to get something set up that I almost got forgotten about. Last day was their maintenance day so we all had to go over to Reading for our treatment - identical machine, I made a comment that it might be a bit more reliable than the Bracknell machine, she laughed.

Some minor side effects, flow not as good as it could be but the bowels seem to be getting back to normal. No tiredness and now I don't have to go down there every day I am getting back to enjoying life again. And some great handshakes from fellow patients when we said our farewells.

Dave

User
Posted 19 Feb 2016 at 10:32

Well done Dave, glad it all went smoothly, I had the same few problems with maintenance and breakdowns but as thre are five machines at Worcester Hospital we were just switched to another one. Sometimes there were delays as they squeezed someone in that was an urgent case.

It's good to have made some acquaintances with the guys having treatment as we are all in the same boat and there is camerardery between us all.

Best wishes for the future

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 19 Feb 2016 at 15:34

Pleased all went quite smoothly for you. My husband due to start 20 sessions beginning of March. We went for planning session on Wednesday.ok but 2 days later can't even see where tattoos were done,we had mentioned our concern at the time as oh has black skin,bit worried,any thoughts?

User
Posted 19 Feb 2016 at 17:28

Glad everything went well Dave as I will be embarking on a similar path soon. One slight departure at Clatterbridge where I will be going is that they use gold markers to guide the radiotherapy. I am having these "inserted" (never a good word lol) on the 15th of March. 3 markers are used and they stay inside the prostate forever. The procedure is similar to the TRUS biopsy but not as bad - 3 shots from the "nail gun" as opposed to 12.

The idea of the markers is to enable them to "dose paint" the radiotherapy giving the tumour an extra blast and other areas a reduced dose.

User
Posted 19 Feb 2016 at 19:45

The tattoo marks are indeed very small, I imagine they may be hard to see on dark skin. Don't worry though, I am sure they will see them. Each day they add further marks with felt tip there and a couple of inches below on each side, presumably so they can clearly see them when they align the machine. Not sure what coloured pen they will use for you though. Usually they doodled in black felt tip but one day it was bright red - scared me somewhat next morning as I thought I must have cut myself!

User
Posted 19 Feb 2016 at 19:50

That might just be a local thing at your hospital Davews .... they never drew anything on John!

Sofijoan - I wouldn't worry about it - they are well practised in their stuff and will know where to look :-)

Edited by member 19 Feb 2016 at 20:55  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Feb 2016 at 22:33

The gold markers seem a good idea. I didn't have any tattoos but alignment marks were made on the body mold into which I climbed and was bolted in for each treatment session. The mold was in turn bonded to a frame that was screwed to the platform of the linac - a laborious process but one that ensured no movement. So another variation.

Barry
User
Posted 20 Feb 2016 at 20:52

Thanks for comments and reassurance,rang hospital and they asked us to come in 3 days before radiotherapy starts so can be checked if all ok.

User
Posted 05 Apr 2016 at 09:11

Well yesterday I had my 6 week check up with the oncologist. PSA was 0.23 or so, maybe not as low as some have had at this stage but she seemed very pleased. No more Prostap injections, it was planned just for a 6 month course based on my initial diagnosis so the one I was going to have this week is now cancelled. Bowels virtually back to normal, still some waterworks problems but they are definitely getting better and I am starting to have decent night's sleep. The body is very slow, but it is definitely going in the right direction. Another PSA test and appointment in six months time. Compared with some on here it seems I have been very lucky.

I will continue to monitor here from time to time but guess I have no real need now.

Dave

 

User
Posted 05 Apr 2016 at 12:22

Excellent news x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Apr 2016 at 13:31
Dave,

It's always good to have good news and your Psa score is excellent so soon after RT. My initial score was 0.5 and has fallen to 0.2 , so your'e doing well compared to me. It takes time for the body to recover from what you've been through, so don't push yourself too hard too soon. I recall a few months after finishing RT ŵhat would usually take me about 40 minutes to cut the grass was taking about 2 hours. I learnt that nothing really matters that much and doing usual chores over a period of time was fine. Now I'm back to 'normal ' I can't play the HT card too often now although the continuum of HT does still affect me from time to time. I'm quite envious that you have stopped Prostap.

Hopefully it won't be too long before you'll start to feel more like your old self again.

Regards,

John

User
Posted 10 Oct 2016 at 21:17

Well today I went for my six month checkup. Expecting good news but it seems not, PSA has risen to 1.1 (as against 0.23 in April). She doesn't know whether it is a result of stopping the hormone injections after the January one or whether there is a problem which will need further scans so I have to go back in 2 months time. The blood test form which she gave me has as well as PSA my blood count, liver and calcium tests, has anybody else had those which don't seem much to do with the prostate?

But she did comment that I looked very well - and in fact I do feel almost back to my old fit self today - and with the minor urine and bowel symptoms I described seemed not too worried. Time will tell, but it is certainly not time to celebrate quite yet...

Dave

User
Posted 10 Oct 2016 at 21:58
Dave,

The blood tests I have are - Creatinine & electrolytes, LFT, FBC, testosterone as well as PSA

Arthur

User
Posted 05 Dec 2016 at 16:07

Just back from my latest appointment with the oncologist. PSA back down to 0.35 from 1.1 in October so very pleased - 10 months after end of RT and Prostat HT. They will continue to monitor with next appointment in 3 months. Nice Christmas present!

Dave

User
Posted 06 Mar 2017 at 20:01

Just an update, had my latest appointment at Royal Berks. PSA risen very slightly to 0.4 but still very much what they call 'stabilised' so everything looking good. Next one in September. It was interesting re-reading all that I had posted on here over a year ago when I was having the RT and it is good to know that all that is now behind me. More significantly, whereas then I was popping to the little room 8-10 times during the night, and seeing all hours on the clock, I have now got that down to a far more respectable 2-3 trips, even oversleeping at times. Little things that say I am largely cured, and I have been far more fortunate than some of the others that post here. PC CAN be cured - provided it is caught in time.

User
Posted 06 Mar 2017 at 22:39

Excellent news - congratulations

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Sep 2017 at 18:59

Just back from my latest checkup. I was a little concerned that things may have gone the wrong way as I have had a few small issues with the waterworks lately (and an attempt to wean me off tamsulosin showed me very soon that I DO still need it). But I was very pleased to find my PSA is now 0.45 (as against 0.49 in March) so very much going in the right direction. And despite having virtually no libido the testosterone is back to normal levels. Next test in six months.

So encouragement to those who have just recently been diagnosed, PC CAN be cured...

User
Posted 05 Sep 2017 at 16:56

Dave, I don't want to dampen your spirits, but talk of "cure" with PCa is unwise. At PSA levels below 0.1, it is possible, but not certain. I judge that at your reported levels, you may not have seen the last of it. My personal nadir was 0.3 about eight years ago and I'm 1.1 at present. That just serves to illustrate my point. Nevertheless, get on with your life and know that there are loads of treatments to help you prolong it, should the PCa resurface.

Good Luck

AC

User
Posted 12 Mar 2019 at 08:23
Had my 6 month check up yesterday. PSA seems to have stabilised around 0.48 so I have now been discharged from the hospital with annual PSA checks to be done via my GP. Symptoms largely gone now and in good health - last autumn I walked the Capital Ring around London and have just started the longer London Loop and quite enjoying it. Fingers crossed my PSA will stay low.

 
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