Brachytherapy - Side Effects

Hello PoppyLove 

Welcome to the group - although I am so sorry to find you joining us.

I am not medically trained, but from personal experience and being on the group for a number of years I would think you can rule out brachytherapy as the cause and as your dad's team have ruled out a UTI that still leaves a few potential issues and I would have thought urology, rather than oncology would be dealing with dad's issues.

My thoughts are the problem could be caused by an inflamed prostate, kidney or bladder stones or a blockage in the urethra. (I had the latter, that's what got me here in the first place, click on my user name or avatar for the full story). The only advice I can give from personal experience is to increase the fluids to help with the flow. My issue was resolved by fitting an indwelling catheter until I could have a TURP operation to "shave" my enlarged prostate.

Do let us know how dad gets on.

Best wishes - Brian.

Hello Poppylove

As it’s the weekend, I would suggest ringing NHS111 in the first instance. If you can’t get any satisfaction you have the option of going to an Urgent Care Centre or, maybe, consult a pharmacist?

hth

Hi PoppyLove sorry to hear about your dad.  It doesn’t sound particularly prostate cancer or treatment related but more like a blockage.  The temptation when this happens is to try not to drink as much, but usually increasing fluid (which is counterintuitive) is better.  If he is drinking 3 or more pints a day and still having the same issue or anything gets worse, I would talk to 111.

Hi Brian,

Thank you so much for coming back to me.

Can I ask why you dont think its related to the Brachytherapy? I thought it sounded like it could be radiotherapy cystitis?

I did forget to add in my original post that he did pass a small white round ball thing, which he said was soft not hard. After a bit of a Google (I know we should take it with a pinch of salt) but it said he could be tissue damage from the radiotherapy(?) rather than a stone because of its spongey-ness. Does that seem likely?

Trying to get my dad to drink water is like wishing for a million pounds, he calls it "devils juice" , we have managed to get him to drink a bit more if we give him lemon barley juice.

He has quite a few appointments coming up so im hoping we should be able to get some help/progress a bit more, was just hoping there might be some magic temporary thing to help him initially while we wait.

Will let you know how the appointments go, just annoying that Urology isn't until May! 

Hi David

Thank you so much for your reply.

He definitely doesn't drink 3 pints of water a day (we are trying - but he hates it), he does drink a lot of decaff coffee though. 

Its more of the stinging thats hurting him when he passes urine, he doesn't have any bladder or tummy pain.

I forgot to include in my original post that he did pass a small spongey white ball a few weeks ago, which Google said might be bladder wall lining shedding from the radiotherapy- does that seem likely do you think?

Thank you again 

Hello PoppyLove 

Yes, it could well be radiation cystitis but in my mind there are other things going on too - so I went for the other options.

It's always worth a call to his Radiotherapy unit to ask their opinion. it costs nothing and you may well get some answers.

In the meanwhile I still think he needs to increase his water intake - when I was in hospital with CKD and an eGFR of 8 I was told 6-8 litres of water minimum per 24 hours or you may never recover your kidney function - it's amazing what a little encouragement can do!!

Yes please do keep us posted.

Best wishes - Brian.

Hi again PoppyLove , have you spoken to his team about the white ball?  Personally I have no experience of this type of event, but it sounds like it needs investigating.  Hydration doesn’t need to be water but can include squash, as long as it’s clear. 

for what it's worth I think the key to this painfull urinating problem is fluid intake. Its natural to avoid the very thing that produces urine but also the pain and discomfort. He needs to look past this and drink at least 2ltrs water spread over the day. He can stop drinking a few hours before bedtime.

He really needs to do this whether he likes it or not and also restrict his coffee intake to maybe one cup in the morning. In my humble opinion this will be the easier way out of distress...  Cheers Dave

Hi Everyone

Thank you for all your replies. 

We have been pushing dad to drink more fluids- we get at least 2 pints of barley water into him when he gets home from work. We try to encourage him to drink when he is at work but he gets anxious doing so because he doesn't want to be caught short on the train home, so am not sure how much fluid he is getting into him at work.

His urology appointment has been cancelled..

We saw the GP yesterday and they prescribed co-codamol and Instigell. The gel has made it worse. I went to the appointment with him and asked if he he could take Mirabegron alongside Tamsulosin and the Dr wanted to get advice from Urology. I also asked for a KUB ultrasound for him (because of passing the spongey ball) and the Dr said they weren't detailed enough - I asked if they weren't detailed enough to see the spongey ball and she couldn't answer.

He has an oncology appointment on Tuesday 28th April. If they cant give us something or getting a more urgent referral to Urology I am going to complain to Pals as this is a joke. 

I have suggested to my dad just rocking up to A&E one day, which I know isn't ideal but he might get what he needs sooner but he doesn't want to go because he doesn't want to be away from the toilet or comfort of his home.

I just feel so at a loss, he is in so much pain, but doesn't want to do the emergency route and the routine routes arent helping. 

Hello PoppyLove 

PoppyLove said:

he is in so much pain, but doesn't want to do the emergency route and the routine routes arent helping. 

I agree you need to take some action. I think a call to 111 will only result in more painkillers.

I think you are right with this statement:

PoppyLove said:

I have suggested to my dad just rocking up to A&E

Dad shouldn't be in any pain - it's a Sunday tomorrow - he's not going to miss work and there are plenty of toilets at A & E. Tuesday is a routine appointment so I can't see you getting much joy there. A & E have the facilities to fully check him over and if need be undertake a CT scan to see if that comes up with anything.

If it was my dad - he would be on the way to A & E ASAP. If he's in pain something is causing it - and us men try and be brave so it may be worse than he's letting on.

Do let us know how you get on.

Best wishes - Brian.