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Radiotherapy cystitis

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User
Posted 29 Aug 2019 at 14:49

Hi,


Does anyone have any tips for dealing with the above?


My husband's had 17 treatments with 20 still to go. He's up a lot in the night so isn't sleeping well at all.


The nurses here say that's just the way it is : (


He's been checked for a UTI, main symptoms are frequent urination and poor flow (he's already on tamsalosin) 

User
Posted 29 Aug 2019 at 18:54
I had the same experience, Gemma. Having to pee every 45m all night long is an absolute killer in terms of sheer exhaustion. What I ended up doing was buying a plastic urine bottle from Amazon. Didn’t stop the need to pee, but it meant I didn’t have to get out of bed, and that made a huge difference in terms of being able to get back to sleep until the next time.

It’s just a case of getting through it, I’m afraid. The good news is that the frequent peeing should ease off relatively rapidly after RT finishes. For me the side-effects peaked about 10 days after the end of RT, and a fortnight after that I was peeing pretty normally again. I finished RT in late March, so five months ago, and I’m still taking Tamsulosin every other day now to help with flow.

Cheers,

Chris
User
Posted 29 Aug 2019 at 19:54
At worst during RT I was having to pee up to 8 times a night which was debilitating notwithstanding that I managed to get to sleep again quite quickly and had a few short naps during the day. This frequency great reduced towards the end of and following RT so after a couple or so months after RT finished I was back to my pre treatment 1 or 2 nocturnal visits. I think a lot of men have similar experience with RT.
Barry
User
Posted 03 Sep 2019 at 10:54

Just a quick follow up if anyone's following and experiencing the same;


Nurse recommend taking 2 Ibuprofen before going to bed to reduce inflammation. My husband still gets up in the night but not anywhere near as much as he was (he also started cranberry juice) 

User
Posted 29 Aug 2019 at 16:49
It is always best to check with your own RT team but John was told to drink cranberry every day during RT and for 2 weeks after.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Aug 2019 at 22:50

Cranberrry juice may help. I was drinking it all through RT (although I don't know if it helped). If you are on a low fibre diet, make sure it's a clear cranberry juice. I used the Ocean Spray Light cartons (otherwise you will be consuming loads of sugar too).


RT hits the bottom of the bladder and irritates it, and thus reduces bladder capacity. Added to this, it hits the internal urinary sphincter and weakens that, which means you are likely to become at least a little incontinent during RT. Get some mens incontinence pants in preparation, and I suggest wearing them on the treatment table. Also, he is doing pelvic floor exercises I hope? This will help work around incontinence in some cases, strengthening the external urinary sphincter to use when the internal one leaks.


The low flow rate is because the prostate becomes inflamed. This is expected too. These symptoms usually all start clearing up 2 weeks after RT finishes.

User
Posted 29 Aug 2019 at 22:55

Another tip - put something next to the bed to pee into, unless you have an en suite. I used a 4 pint milk bottle, and screw on the lid so that when you kick it over...

User
Posted 29 Aug 2019 at 23:26

I think Ocean Spray is a 'from concentrate' in which case it would be better to buy the pure juice or just buy bags of frozen cranberries and whizz them in the blender with a bit of honey.


Not everyone has incontinence or frequency issues during RT.

Edited by member 30 Aug 2019 at 00:26  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Apr 2020 at 12:14

Tamsulosin doesn't last 24 hours, so you normally take it with the first meal of the day to cover day-time, or the last meal of the day to cover night-time. You must always take it with a meal, as that's part of how its slow release mechanism works. On an empty stomach, it can generate an overdose (which risks you fainting), and it runs out sooner in the day. Also be careful if taking any PDE5 inhibitors (Sildenafil, Tadalafil, Vardenafil, Avanafil), as Tamsulosin and PDE5 inhibitors are both uncontrolled short term blood pressure reducing tablets (it's a side effect), and if you take them at the same time, you also increase the chance of fainting.


As always, you might want to discuss with your GP, but at least you now have some background to understand how Tamsulosin works.

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User
Posted 29 Aug 2019 at 16:19
Is he drinking cranberry juice (the proper stuff, not the cheaper 'from concentrate')? Has he cut out all caffeine?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Aug 2019 at 16:42

Thanks Lyn, I wasn't sure about cranberry juice with radiotherapy but I'll pick some up and try that tomorrow

User
Posted 29 Aug 2019 at 16:49
It is always best to check with your own RT team but John was told to drink cranberry every day during RT and for 2 weeks after.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 29 Aug 2019 at 18:54
I had the same experience, Gemma. Having to pee every 45m all night long is an absolute killer in terms of sheer exhaustion. What I ended up doing was buying a plastic urine bottle from Amazon. Didn’t stop the need to pee, but it meant I didn’t have to get out of bed, and that made a huge difference in terms of being able to get back to sleep until the next time.

It’s just a case of getting through it, I’m afraid. The good news is that the frequent peeing should ease off relatively rapidly after RT finishes. For me the side-effects peaked about 10 days after the end of RT, and a fortnight after that I was peeing pretty normally again. I finished RT in late March, so five months ago, and I’m still taking Tamsulosin every other day now to help with flow.

Cheers,

Chris
User
Posted 29 Aug 2019 at 19:15

Thanks Lyn and Chris.


In an awful situation it's great to have a community of caring people! This is especially the case with the other patients in the department.


We'll try some of those ideas

User
Posted 29 Aug 2019 at 19:54
At worst during RT I was having to pee up to 8 times a night which was debilitating notwithstanding that I managed to get to sleep again quite quickly and had a few short naps during the day. This frequency great reduced towards the end of and following RT so after a couple or so months after RT finished I was back to my pre treatment 1 or 2 nocturnal visits. I think a lot of men have similar experience with RT.
Barry
User
Posted 29 Aug 2019 at 22:50

Cranberrry juice may help. I was drinking it all through RT (although I don't know if it helped). If you are on a low fibre diet, make sure it's a clear cranberry juice. I used the Ocean Spray Light cartons (otherwise you will be consuming loads of sugar too).


RT hits the bottom of the bladder and irritates it, and thus reduces bladder capacity. Added to this, it hits the internal urinary sphincter and weakens that, which means you are likely to become at least a little incontinent during RT. Get some mens incontinence pants in preparation, and I suggest wearing them on the treatment table. Also, he is doing pelvic floor exercises I hope? This will help work around incontinence in some cases, strengthening the external urinary sphincter to use when the internal one leaks.


The low flow rate is because the prostate becomes inflamed. This is expected too. These symptoms usually all start clearing up 2 weeks after RT finishes.

User
Posted 29 Aug 2019 at 22:55

Another tip - put something next to the bed to pee into, unless you have an en suite. I used a 4 pint milk bottle, and screw on the lid so that when you kick it over...

User
Posted 29 Aug 2019 at 23:26

I think Ocean Spray is a 'from concentrate' in which case it would be better to buy the pure juice or just buy bags of frozen cranberries and whizz them in the blender with a bit of honey.


Not everyone has incontinence or frequency issues during RT.

Edited by member 30 Aug 2019 at 00:26  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 30 Aug 2019 at 17:00

Thanks Andy

User
Posted 03 Sep 2019 at 10:54

Just a quick follow up if anyone's following and experiencing the same;


Nurse recommend taking 2 Ibuprofen before going to bed to reduce inflammation. My husband still gets up in the night but not anywhere near as much as he was (he also started cranberry juice) 

User
Posted 03 Sep 2019 at 13:50
That's a great idea! I wish someone had suggested that to me.

Chris
User
Posted 03 Sep 2019 at 14:45

I know! I was annoyed I didn't think of it! Obvious when you know 


Hope it helps someone else

User
Posted 01 Apr 2020 at 09:37

I've been lurking in the shadows since last summer and my diagnosis.


My RT finnished two weeks ago yesterday. But who's counting. My cystitis has been debilitating for the last three weeks. In my last week I was prescribed morphine which does/did work. I've stopped that as I didnt want to have to handle other side effects as well.


Last night I tried Ibuprofen also. Two tablets. Which the RT team recomended at the QE Birmingham TBH, & which I promptly forgot about.


It did work for me last night so thank you. Over the last three weeks I've been up 5/6 times with urgency & little flow so sleep deprived and trying to hold down a f/t job, deskbound thankfully. Last night two WC visits with a lot less pain.


Worth trying!

User
Posted 01 Apr 2020 at 21:29

If you are getting up lots of times but the flow is slow, you might be a candidate to try Tamsulosin. In this case, to be effective at night, you would take it with the last meal of the day. Ask your radiotherapy team if they think it's appropriate for you.

User
Posted 08 Apr 2020 at 10:41

Hi Andy


 


Thanks for that, I have been on Tamsulosin since last summer but take it 1st thing in the morning.


I'll switch to taking it last thing at night to see if that helps.


 


cheers

User
Posted 08 Apr 2020 at 12:14

Tamsulosin doesn't last 24 hours, so you normally take it with the first meal of the day to cover day-time, or the last meal of the day to cover night-time. You must always take it with a meal, as that's part of how its slow release mechanism works. On an empty stomach, it can generate an overdose (which risks you fainting), and it runs out sooner in the day. Also be careful if taking any PDE5 inhibitors (Sildenafil, Tadalafil, Vardenafil, Avanafil), as Tamsulosin and PDE5 inhibitors are both uncontrolled short term blood pressure reducing tablets (it's a side effect), and if you take them at the same time, you also increase the chance of fainting.


As always, you might want to discuss with your GP, but at least you now have some background to understand how Tamsulosin works.

User
Posted 08 Apr 2020 at 13:02
I wander if Tamulosin might help my flow. I am down to 3ml/sec max which diminishes to a dribble fairly quickly. I am awaiting cystoscopy and probably dilation. Maybe it would relax the bladder neck (no prostate) however I would be concerned it might make the urge and frequency work or cause leaking.

Any thoughts?

Cheers
Bill
User
Posted 08 Apr 2020 at 15:21

I would ask about trying it. If the constriction is a stricture which isn't smooth muscle based (e.g. scar tissue), it probably won't help, but if it is in part smooth muscle based, it might help.


It's quick acting, so you'll know in a day or two, and if it doesn't work, it will be gone from your system in a day or two.

 
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