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Bladder filling for radiotherapy

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User
Posted 09 Dec 2017 at 10:48

Ive just had my first three sessions of radiotherapy - They tell you often in the lead up that its important to have a full bladder and empty bowel for the treatment to have the best outcome. My radiologist has commented that my bladder is either too small or too big on all three occasions so far. I have the weekend off now but am worrying that I'm failing in a way that could mean more chance of side effects.

They do a pre scan on the first four sessions in my hospital and I am worried if I don't get it right on Monday then I'll end up going through the whole 20 sessions getting it wrong with a higher chance of impotence or incontinence in the end.

1st session - bladder not full enough, 2nd session bladder not full enough (and bowel not empty enough) 3rd session bladder too full.

My radiologist doesnt have the best bedside manner and is a bit like a teacher talking to a naughty boy - he just says for me to keep hydrated evenly through the day - which i thought i was doing. All I want is for him to say is this isn't a huge problem - is it ? (after all they are going ahead each time) and give me some positive feedback which he definitely isn't - so the feeling I am left with is that Ive only got 20 sessions to get this right and Ive already failed the first three. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif

User
Posted 10 Dec 2017 at 16:40

Hi Tony, I finished my 20 sessions of salvage radiotherapy at the end of April.

Like Graham61 when I arrived at the hospital, first of all all I had to use a micro enema (first 10 days) to empty rectum of gas etc., then half hour before treatment empty my bladder followed by 3 cups of water. On 18 of the 20 occasions my bladder was more full than the planning scan and for two consecutive days it was under, one day quite a bit under. I was asked to drink an extra cup of water the second of those days.

I spoke to the senior radiologist and she assured me that I was still well within tolerance for treatment to go ahead. If I was completely out of tolerance they would ask me to empty my bladder and then start again.

One of the worries I had was that becuase I no longer have a prostate and therefore couldn't have fiducial markers how did they know they were targeting the right area. I was told that they were doing a very accurate cone scan of my pelvis each day and then moving the bed remotely to get best alignment. 

My second worry/problem was that every day I waited 45 minutes to an hour and a bit after drinking the three cups of water before getting my treatment. 

The staff were wonderful, very reassuring and professional which helped put me at ease. They repeatedly said treatment would not happen until they were satisfied I was prepared properly and they had everything aligned.

I would talk to them about your concerns and if like me you see a nurse specialist for a weekly review bring it up with them too.

Hopefully they will be able to explain things properly and reassure you.

Best wishes, Ian.

 

Ido4

User
Posted 13 Dec 2017 at 16:50

Hi Tony,

It may be worth asking about being prescribed Tamsulosin for your bladder emptying problems. I was offered it while I was receiving radiotherapy and am still using it 8 years later. I know I can live without it as I have given myself a "Tamsulosin holiday" several times over that period.

However without Tamsulosin I take longer to start and have a weaker flow so each toilet visit takes that much longer. I don't experience any side effects and have been assured that there are no long term problems with taking this drug.

Tom

Edited by member 13 Dec 2017 at 16:54  | Reason: Not specified

User
Posted 09 Dec 2017 at 13:07

Hi Tony,

I’ve recently finished radiotherapy and understand your concerns.

I was told to be fully hydrated before leaving home for RT. That was 3 mugs of green tea and an empty bladder, before I left for 1hr journey to the hospital. On arrival, min. ½ hour before RT time, report in, empty bladder, then drink 3 cups of water and wait to be called.

On a good day this worked fine, but as the radiologists told me, sometimes doesn’t because of uncontrollable reasons such as weather temperature, humidity, the body, longer journey or waiting time, etc.

I frequently had to fill or part-empty my bladder and once empty my bowels when the side effects of RT kicked in with wind and diarrhoea. This was the same for other patients.

All the radiologists who treated me were absolutely brilliant about this thankfully. You can only do your best.

I think the problem is the radiologist’s bad bedside manner. As you said they went ahead with treatment.

It might be worth speaking to someone in the department, a nursing sister, about your concerns, for your peace of mind, which is important.

Best wishes.

User
Posted 09 Dec 2017 at 15:52
Originally Posted by: Online Community Member

All I want is for him to say is this isn't a huge problem - is it ?

[img=http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif]

Tony it does have the potential to be a huge problem, I finished 33 sessions of RT in May 2017 and the latest suggestion from my consultant is to have my bladder removed due to the RT damage or have a super pubic Catheter for the rest of my life along with the chance of developing bladder cancer.

On at least five occasions and possibly more my bladder would have been empty during the RT treatment. As far as I am aware I was scanned every day of treatment. I know I was definitely scanned on the last day of treatment because they let my wife watch from the control room and explained what they were seeing on screen.

As with Graham all the radiographic staff were fantastic.

Keeping hydrated all day sounds the right Idea, it's just trying to achieve it that can be difficult. I drank water on the way to hospitial emptied my bladder on arrival and slowly drank the obligatory 3 cups of water before treatment, finishing the last cup 20 minutes before treatment. I assume how long it takes water to travel from the mouth to the bladder varies from person to person as well as the external influences already mentioned by Graham.

Hope you get it resolved.

Thanks Chris

User
Posted 12 Dec 2017 at 15:52

Hi Tony, It's great you've had this chat with the radiologist. The centre I went to made sure the appointments were at the same time every day.

(My treatment time was 10:30 but it was always between 10:40 and 11:15)

This allows you to get into a routine. is there a specific reason for you appointments being at different times?

That's a pain!

It sounds like you are getting into a hydration routine and all the advice I had from this forum from others who had gone through radiotherapy was the importance of having a routine to keep things steady.

One other point, I had to drink my allocation of water half an hour before treatment. Have you been told 15 minutes?

I hope the remaining doses go well. 

Ian

Ido4

User
Posted 13 Dec 2017 at 11:27

Hi Tony, Hang in there. I hope the appointments go well. If you start to get bowel side effects Fybogel is wonderful!

Ian

Ido4

User
Posted 30 Dec 2017 at 21:58

Are you drinking pure cranberry juice or from concentrate? Pure is better.

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

User
Posted 30 Dec 2017 at 23:17

Hi Tony,

I got cystitis a couple of weeks into my 20 session of RT.

I had got fed up with drinking so much water and green tea that one evening after RT I didn't drink as usual and it started.

The cystitis went as soon as I started drinking heavily, (water) again.

Hang in there just 4 sessions left. Think what it'll be like when it's behind you.

Best wishes, G 

 

User
Posted 31 Dec 2017 at 09:25

Hi Tony
Try to avoid coffee if you can it can make cyctitus worse and plenty of cranberry juice. plain live yogurt is good as well and add your on flavouring. hope it gets better soon.
regards Barbara

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User
Posted 09 Dec 2017 at 13:07

Hi Tony,

I’ve recently finished radiotherapy and understand your concerns.

I was told to be fully hydrated before leaving home for RT. That was 3 mugs of green tea and an empty bladder, before I left for 1hr journey to the hospital. On arrival, min. ½ hour before RT time, report in, empty bladder, then drink 3 cups of water and wait to be called.

On a good day this worked fine, but as the radiologists told me, sometimes doesn’t because of uncontrollable reasons such as weather temperature, humidity, the body, longer journey or waiting time, etc.

I frequently had to fill or part-empty my bladder and once empty my bowels when the side effects of RT kicked in with wind and diarrhoea. This was the same for other patients.

All the radiologists who treated me were absolutely brilliant about this thankfully. You can only do your best.

I think the problem is the radiologist’s bad bedside manner. As you said they went ahead with treatment.

It might be worth speaking to someone in the department, a nursing sister, about your concerns, for your peace of mind, which is important.

Best wishes.

User
Posted 09 Dec 2017 at 15:52
Originally Posted by: Online Community Member

All I want is for him to say is this isn't a huge problem - is it ?

[img=http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-frown.gif]

Tony it does have the potential to be a huge problem, I finished 33 sessions of RT in May 2017 and the latest suggestion from my consultant is to have my bladder removed due to the RT damage or have a super pubic Catheter for the rest of my life along with the chance of developing bladder cancer.

On at least five occasions and possibly more my bladder would have been empty during the RT treatment. As far as I am aware I was scanned every day of treatment. I know I was definitely scanned on the last day of treatment because they let my wife watch from the control room and explained what they were seeing on screen.

As with Graham all the radiographic staff were fantastic.

Keeping hydrated all day sounds the right Idea, it's just trying to achieve it that can be difficult. I drank water on the way to hospitial emptied my bladder on arrival and slowly drank the obligatory 3 cups of water before treatment, finishing the last cup 20 minutes before treatment. I assume how long it takes water to travel from the mouth to the bladder varies from person to person as well as the external influences already mentioned by Graham.

Hope you get it resolved.

Thanks Chris

User
Posted 10 Dec 2017 at 16:40

Hi Tony, I finished my 20 sessions of salvage radiotherapy at the end of April.

Like Graham61 when I arrived at the hospital, first of all all I had to use a micro enema (first 10 days) to empty rectum of gas etc., then half hour before treatment empty my bladder followed by 3 cups of water. On 18 of the 20 occasions my bladder was more full than the planning scan and for two consecutive days it was under, one day quite a bit under. I was asked to drink an extra cup of water the second of those days.

I spoke to the senior radiologist and she assured me that I was still well within tolerance for treatment to go ahead. If I was completely out of tolerance they would ask me to empty my bladder and then start again.

One of the worries I had was that becuase I no longer have a prostate and therefore couldn't have fiducial markers how did they know they were targeting the right area. I was told that they were doing a very accurate cone scan of my pelvis each day and then moving the bed remotely to get best alignment. 

My second worry/problem was that every day I waited 45 minutes to an hour and a bit after drinking the three cups of water before getting my treatment. 

The staff were wonderful, very reassuring and professional which helped put me at ease. They repeatedly said treatment would not happen until they were satisfied I was prepared properly and they had everything aligned.

I would talk to them about your concerns and if like me you see a nurse specialist for a weekly review bring it up with them too.

Hopefully they will be able to explain things properly and reassure you.

Best wishes, Ian.

 

Ido4

User
Posted 12 Dec 2017 at 14:49

Thanks for the replies

One problem I have is that each of my sessions is at a different time of day - anytime between 10 and 3:30 with no two consecutive days the same - so I found getting a routine was hard. However, I brought it up with my radiologist and we had a good chat.

When you first start having beam radiotherapy they do two passes with the machine - one pass to scan and one to fire the beams - the scan pass is to check everything against your planning scan which you have about 3-4 weeks before your treatrment starts. They do these check scans at my hospital only the first 4 times (this can vary). Although my radiologist was being a bit unfeeling the first 3 times by just saying too full or not full enough when I was worried about damage to my bladder or bowel - he has told me that he was able to adjust the treatment beams very slightly to take account of this - however once the first 4 treatments are done they dont prescan anymore and so theres no way of them seeing if your bladder is too full or not full enough - so by the 4th one you need to get it right !   Luckily I had a weekend break between 3rd and 4th treatment and I was able to even out my hydration over the saturday and sunday and so I got the 4th one right. Heres my solution ;

I did it by just evenly drinking about 1.5 - 2 litres of water over every 24 hours - no need to worry that your going to the loo a lot - this keeps the bladder slightly filled at all times. I get to the hospital well before my appointment and I take my enema 1 hour before my treatment time which causes an emptying of my bowel within 10 minutes - its difficult not to pass urine at the same time but dont worry,  if you keep evenly hydrated throughout the day your bladder wont empty completely when your enema takes effect.  After coming out of the loo I slowly drink two full cups of water finishing about 15 minutes before my treatment and this just fills my bladder sufficiently.

User
Posted 12 Dec 2017 at 15:52

Hi Tony, It's great you've had this chat with the radiologist. The centre I went to made sure the appointments were at the same time every day.

(My treatment time was 10:30 but it was always between 10:40 and 11:15)

This allows you to get into a routine. is there a specific reason for you appointments being at different times?

That's a pain!

It sounds like you are getting into a hydration routine and all the advice I had from this forum from others who had gone through radiotherapy was the importance of having a routine to keep things steady.

One other point, I had to drink my allocation of water half an hour before treatment. Have you been told 15 minutes?

I hope the remaining doses go well. 

Ian

Ido4

User
Posted 13 Dec 2017 at 09:16

Hi Ian

No particular reason for the appointments spread out all over the day other than thats the way the hospital gave them to me. Although no two consecutive days the same time is a bit extreme I think !

Sorry I didnt mean to give the impression that I drank my 2 cups of water 15 mins before my treatment. I usually start with one cup about 30  mins before and have finished the second one by 15 mins before - so it doesnt just all go in in one big rush - the appointments are usually a little late any way so it works out at two cups 20 to 40 mins before.

Anyway 5 sessions in and starting to feel effects - fingers crossed for the future.

 

User
Posted 13 Dec 2017 at 11:27

Hi Tony, Hang in there. I hope the appointments go well. If you start to get bowel side effects Fybogel is wonderful!

Ian

Ido4

User
Posted 13 Dec 2017 at 13:57

thanks Ian - so far bowel seems OK - if anything its looser - but I have noticed that it now takes me about 5 times longer to empty my bladder (slightly uncomfortable but not painful) after my treatment session - seems better the following morning though so Im assuming the treatment causes the bladder to swell and this constricts the urethra and maybe the swelling is going down overnight while I sleep. I have to add that I had no previous symptoms around passing urine at all - my diagnosis was just random luck with a PSA test - so any change in bladder function is probably noticed more by me.

User
Posted 13 Dec 2017 at 16:50

Hi Tony,

It may be worth asking about being prescribed Tamsulosin for your bladder emptying problems. I was offered it while I was receiving radiotherapy and am still using it 8 years later. I know I can live without it as I have given myself a "Tamsulosin holiday" several times over that period.

However without Tamsulosin I take longer to start and have a weaker flow so each toilet visit takes that much longer. I don't experience any side effects and have been assured that there are no long term problems with taking this drug.

Tom

Edited by member 13 Dec 2017 at 16:54  | Reason: Not specified

User
Posted 30 Dec 2017 at 20:22

Thanks Tom - I'm a bit further on now (4 sessions left) and going ok but my radiation cystitis has got progressively worse. I thought the 4 days off treatment for christmas would ease my symptoms but no. The hospital seem reluctant to use drug therapy for this unless it gets really bad (what is really bad?) so I'm keen to find any experiences with easing of the symptoms. Im eating very bland food and drinking only water. One of the nurses who treat me suggests ibuprophen to reduce bladder inflammation - anyone tried this ? With only 4 sessions out of 20 left I'm keen to know how long the symptoms will persist once I finish treatment or if there is likely to be any permanent damage from the cystitis - any advice ?

Tony

User
Posted 30 Dec 2017 at 21:58

Are you drinking pure cranberry juice or from concentrate? Pure is better.

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

User
Posted 30 Dec 2017 at 23:17

Hi Tony,

I got cystitis a couple of weeks into my 20 session of RT.

I had got fed up with drinking so much water and green tea that one evening after RT I didn't drink as usual and it started.

The cystitis went as soon as I started drinking heavily, (water) again.

Hang in there just 4 sessions left. Think what it'll be like when it's behind you.

Best wishes, G 

 

User
Posted 31 Dec 2017 at 09:25

Hi Tony
Try to avoid coffee if you can it can make cyctitus worse and plenty of cranberry juice. plain live yogurt is good as well and add your on flavouring. hope it gets better soon.
regards Barbara

User
Posted 31 Dec 2017 at 12:14

Thanks for the replies
Lyn - yes cranberry juice from concentrate but unsweetened and diluted 50/50 with water - made the mistake of drinking sweetened and that stung on the way out !

Graham - yes drinking loads of water but careful not too much as this can make the bladder swell as well - I drink about 2 litres a day and I tail it off towards bedtime as I find the constant getting up in the night the most debilitating aspect.
I didnt get on with the green tea or any type of tea.

Barbara - My one "treat" is one freshly ground coffee in the mornings - doesnt seem to make it more "stingy" or increase urgency - if made fresh and drunk within 10 minutes of percolating then coffee is not so bad - after 20 mins it starts to change chemically and is also not good for you - never drink coffee from those "kept warm" pots !
I have plain bio yoghurt with honey - seems Ok.

I have tried the ibuprophen the last two nights and I think the urgency to go overnight has diminished - only 3-4 times a night as compared to 5-6.

 
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