Struggling with radiation cystitis

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User

Posted 10 Jan 2024 at 21:01

My dad finished 4 weeks of radiotherapy last Thursday (he has locally advanced prostate cancer Gleason 4+5) and is having very little sleep at night. He is waking every hour, sometimes twice an hour to wee. He says is painful but not coping well with tiredness now. He has asked for some assistance with drugs but keyworker has told him to wait a few days - feels like a nightmare for him. Does anyone have any advice?

User

Posted 10 Jan 2024 at 23:31

There are various levels of radiation cystitis, a few months after salvage RT, I started passing lots of clots, debris and tissue. It was eventually diagnosed as severe radiation cystitis and did considerable damage to my bladder. My radiation cystitis was not recognised until it was too late,make sure you get the right help

Drinking cranberry juice is often advised,but I never found it to be effective. Some drinks can neutralise the effects of some medication.My urology and district nurses suggest lemon barley water to calm the bladder. Avoiding caffeine and fizzy drinks is also advised, drinking water is usually advised.

Thanks Chris

User

Posted 11 Jan 2024 at 00:22

Hi , I fin ished my RT on December 7th and had similar symptoms for around 3 weeks but then cleared themselves to now mostly once a night around 5am .I still drink 2litres of water a day with one cup of tea , 2 coffees and a couple of beers at 11pm which was my routine before RT too .

Hope your symptoms soon improve! I am hopeful.

Best wishes Mike.

User

Posted 11 Jan 2024 at 00:55

For a time after RT and at greater dose than you would get in UK, I was peeing up to 8 times a night at peak. This gradually reduced until until after a couple of months post RT I was back to pre treatment level. However some mucas in poo and 'wet farts' on occasion, continued for about 6 months post RT. The accuracy of radiation has improved over the years and they try to minimise dose to the bowel and rectum but this is still a problem for some, hopefully a lessening one.

Barry

User

Posted 11 Jan 2024 at 08:46

Thanks Chris and im sorry to hear re your bladder issues. Did they give you any medication for your cystitis/bladder? They've said to him if he's still not coping then he can be referred to his oncologist. I mean he's not passing any blood or debris yet but he is struggling. Did you get those symptoms as soon as you finished the RT?

User

Posted 11 Jan 2024 at 10:16

Sharon, I developed my symptoms about 4 months after completing salvage RT, my level of damage is quite rare .

I finished up going out of area for a second opinion, the prof took me into theatre and when I came round he said, there is severe radiation damage and unfortunately it is beyond help.

There are bladder infusions to treat the problem. I tried hyperbaric oxygen treatment but as I say it was all too late. Ask your medical team what experience they have dealing with radiation cystitis, my problem was urology blaming radiology and radiology blaming urology.

To to repeat my level of damage is quite rare, but don't get fobbed off.h

Thanks Chris

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