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Trying again for radio therapy

User
Posted 26 Sep 2020 at 11:22

After being knocked back from my last radio therapy because my bladder was too big, I've now been told it's too small. After more water it was decided that it could go ahead in October. What worries me now is that it will be knocked back because of covid, am I just being paranoid. 

User
Posted 26 Sep 2020 at 18:55

Was this for the radiotherapy itself, or the pre-RT CT scan?

User
Posted 26 Sep 2020 at 18:59

I never heard of a bladder being too big or too small. Do you know what your bladder capacity is?

Or are you talking about this for just one session?

User
Posted 26 Sep 2020 at 19:34

I've been to 2 pre scans first it was too big, second was too small. The consultant said that it happens to men who have driven long distance for lots of years. I had nearly 40 years on lorries on haulage. I was told many years ago that I shouldn't hold on to my wee but I didn't like the woman who told me so disregarded it, and now I'm reaping the benefits of my actions. 

User
Posted 26 Sep 2020 at 23:59

Ah, right. Normal bladder capacity is 400-600ml. However, people who routinely hold on to their wee can cause bladder capacity to grow to over a litre.

Didn't know this would interfere with RT though. Maybe it pushes the prostate into a position where there are too many organs at risk? I don't know what your staging and gleason is, but maybe ask if you would be a candidate for some other radiotherapy, such as brackytherapy or SBRT/Cyberknife? If your hospital doesn't do these, they may not know (although they might still give you a wrong answer), so you might need to ask to be referred to one of the UK's specialist radiotherapy centres to get the right answer (and they might be better placed to handle your special case anyway).

User
Posted 27 Sep 2020 at 00:24

So if I'm right this was the pre-RT CT scan?  They'll have sent you away because basically you need to train your bladder before the RT starts in earnest.  They did the same with me.  I failed a couple of the CT scan sessions and was sent away for a week and told to drink three litres of water a day. Bottom line is you need to get yourself ready for the RT, when you have to have your bladder (and your rectum come to that) in prime state for each day's session.  Your radiotherapy will be five sessions a week for four to eight weeks.  They deal in tolerances of a few millimetres so it's a very precise science.  Every day you turn up with a bladder too full or too empty (or a rectum too full) is an appt slot wasted for the radiographers and a hitch in the appt schedule. You have to train and prepare yourself.

User
Posted 27 Sep 2020 at 00:32

Sorry to have sounded so strict.  Thing is, once you have your pre-treatment CT scan successfully done it's reasonably straightforward.  Everyday you'll have an ultrasound scan to check the state of your bladder.  If it's too full on the day you'll be asked to go to the toilet and let a bit out.  If it's not full enough you'll be given water to drink.  Your rectum is more complex.  You will be given micro-enemas to apply about one hour before your appt time to ensure you are cleared out down there.  You'll get into the habit pretty quickly.

User
Posted 27 Sep 2020 at 13:56

Thanks for the info. I've had to do the enemas and self catheterisation. My treatment starts on 7th October and I have to arrive 75 minutes before the appointment time to get it all done and settled before starting the treatment. 

User
Posted 27 Sep 2020 at 15:17

Originally Posted by: Online Community Member
You will be given micro-enemas to apply about one hour before your appt time to ensure you are cleared out down there.

 

Good advice & info from Bean but worth noting for other readers that not all hospitals require all men to have enemas or micro-enemas before each fraction of RT - like everything else, it is a postcode lottery. 

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

User
Posted 27 Sep 2020 at 15:33

That's true, but lately I feel like it's all up in the air until it actually starts.

The more I keep smiling the more people think I've been up to something. 

User
Posted 27 Sep 2020 at 16:41

Originally Posted by: Online Community Member

Good advice & info from Bean but worth noting for other readers that not all hospitals require all men to have enemas or micro-enemas before each fraction of RT - like everything else, it is a postcode lottery. 

Mount Vernon only give them out if men are having a problem. I vaguely recall them saying they didn't like you using more than 10 during your treatment as they can cause problems and you should be trying to adjust your diet appropriately.

I had only one, on my planning scan. I'm not convinced it was necessary - it didn't produce anything, although they said I was fine when I came back in to be scanned again.

User
Posted 27 Sep 2020 at 17:03

I had a permanent Catheter in during SRT, it was easy to empty the bladder on arrival at the hospital and drink the obligatory amount of water. How quickly the water gets from the mouth to the bladder will depend on various factors. If you can get into a routine it should help.

I did my mini enemas before leaving home. 

As already said not all hospitals do the same thing.

Thanks Chris

User
Posted 27 Sep 2020 at 18:34

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
You will be given micro-enemas to apply about one hour before your appt time to ensure you are cleared out down there.

 

Good advice & info from Bean but worth noting for other readers that not all hospitals require all men to have enemas or micro-enemas before each fraction of RT - like everything else, it is a postcode lottery. 

Thanks Lyn, I hadn't realised that.  Personally I think I'd rather have done without!

User
Posted 26 Oct 2020 at 17:48

Thanks all, I'm half way through now and I'm still not quite sure if the enemas and catheters are doing me much good. They work for the RT but I feel rough for the rest of the day. I feel bloated and I'm getting plenty of exercise running back and forth to the toilet at home. I feel like I daren't pass wind all night. But I'm still smiling, or is it a grimace, I'm not too sure. 

User
Posted 26 Oct 2020 at 19:07
I know what you mean Wavy you don't take any chances during RT if you need to break wind.

Its a trip to the khasi everytime.

User
Posted 26 Oct 2020 at 19:54
Apparently, I sometimes had some wind - but at Addenbrooks, they move the bed you lay on, up & down or sideways to reduce the problem.
User
Posted 26 Oct 2020 at 20:21
In the last few weeks of my RT I was having to pee every 45m all night, which was exhausting. If you're having the same problem I'd strongly recommend buying a urine bottle (Amazon) so you don't need to get out of bed. Dramatically improved the tiredness issue for me because I'd go back to sleep almost instantly.

Chris

User
Posted 27 Oct 2020 at 15:44

Originally Posted by: Online Community Member
In the last few weeks of my RT I was having to pee every 45m all night, which was exhausting. If you're having the same problem I'd strongly recommend buying a urine bottle (Amazon) so you don't need to get out of bed. Dramatically improved the tiredness issue for me because I'd go back to sleep almost instantly.

Chris

I had a few peeing problems when I had the LDR implants in for a while. So I did exactly as Chris has said, I bought a bottle ( actually two) and all worked well for a few weeks. Then, somehow, in my confused semi sleep I managed to miss the bottle and pee on the bed.   I blamed the reduction in length for the mishap. However I went back to walking a mile to the loo, in minus 20C and sitting on the frigid loo seat and peeing that way. Now I only pee about 3 times a night, I can live with that.

The new mattress is quite comfortable, although the cost leads me to believe that the springs are made from some very rare semi precious alloy. Still, if it lasts 20 years like the old one I will be happy, I will be even more happy if I last another 20 years :-)

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1

User
Posted 27 Oct 2020 at 16:06

Hi Chris I am having a little bit of trouble with needing to pee in the night. Some nights it's 5 or 6 times and like last night it was twice. It would be nice if it would stay regular but I've been putting on a bit of weight lately so the exercise will do me some good. I used to get enough exercise jumping to conclusions. 

User
Posted 27 Oct 2020 at 16:52
🤣🤣🤣
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 05 Nov 2020 at 16:33

Hello just to let you know that I have now completed the 20 sessions of radio therapy and the really best part was being allowed to ring the bell as I was leaving and hearing the applause from the waiting patients. As much as I enjoyed the bell ringing I do not want to go through it again. I hadn't realised how much I fidget and it was an effort in the beginning but I soon got used to laying still. I'm pleased it's done and I would recommend it to others, although it won't suit everyone.

Thanks for all the comments, I'll still be looking in. 

 
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