Radiation cystitis, urge incontinence and gynaecomastia!

I am just wondering if anyone relates to any of this holy trinity of side effect I am left with and whether they have any words of advice, reassurance or just plain sympathy! 

In May/June 2022 I had HDR brachytherapy and 15 sessions of external beam radiation. I also had 9 months of Prostap injections after an initial course of Bicalutamide. 

On the Prostate cancer level the news is good with my PSA being around 0.1 to 0.2 since then. 

However a year after the last radiotherapy (ie in June 2023) I developed both radiation cystitis and urge incontinence. Basically it stings most times I pee and there are times when I am unable to control myself if I am getting near to a toilet eg when getting out of the car at a service station or as I am reaching my home. 

The radiation cystitis might (though I am not sure) have been slightly ameliorated by the cessation of artificial sweeteners (I used to drink a lot of Diet Coke) and caffeine (I am now completely decaff). However it is still present and  now something I think I am going to have to live with. 

The urge incontinence has been helped quite a lot with a drug called Mirabegron (50mg daily) but it is still an issue. I do not feel comfortable getting on a tram for instance and I have to be very careful on long motorway journeys. I actually have a peebottle in my car in case of emergencies which I have had to use on a couple of occasions. 

My consultant recently suggested that on top of the MIrabegron I take some anticholinergic drugs but I am a bit concerned as they have been linked (this was dismissed by my urologist) with increased incidence of demential. So I am just sticking with the Mirabegron for now. 

The slight development of breast tissue plus some soreness around the nipples started in December 2023 (a full year after my last Prostap injection) and still continues now. It doesn't really bother me. I don't have noticeable breasts though I am aware of a difference there myself and the pain is not really an issue but can be sore for example when picking up my grandchildren! I did have to have a mammogram which was fine. 

I have been to an endocrinologist as while my testosterone is back to normal I have quite elevated levels of hormones that are normally considered to be female (FH and LSH). The endocrinologist does not seem alarmed by them but I wonder whether my more than usual tiredness may be down to these. I will get tested again in a few months to see if they have started to return to normal.

So...I wonder if any of you guys have got any experiences similar to any of the above 3 side effects and whether you found anything to be useful or whether they eventually went away or whether you have just learned to live with them. 

Thanks for taking the time to read the above!

L J

LJ, a few weeks after salvage RT I started passing blood clots, small amounts of blood, debris and tissue. Urology blamed radiology and radiology blamed urology, I went out of area and eventually got it diagnosed as severe radiation cystitis. It is quite rare to get the level of damage I did. It had a detrimental effect on my bladder, as I say my level of damage is quite rare. I did try some hyperbaric oxygen treatment but it was probably too late . You can gave various bladder infusions to calm things down.

I also tried various anticholinergic drugs to calm my bladder down. I have heard reports about solifenecin, it is supposedly linked to dementia. My pharmacist warned me about it and the surgeon on the FOPS zoom meetings also said it had issues. The surgeon on the FOPS zoom meeting recommended the drug I was prescribed by a professor up in Manchester, I take Trospium chloride, also known as Regurin, I find it very effective,my bladder spasms went from 20-30 a day to between 0 & 3 at most a day.

Hope that helps.

Thanks Chris 

I have been prescribed Trospium Chloride and I may give it a go though it is an anticholinergic drug. My issues don't sound as bad as yours were Chris but they do affect my day to day living. I may ask about the bladder infusions.

Yes - Andy - I did mean LH and FSH. My levels are about 5 times the maximum range for men but I am told that they might return to normal with time. I will also ask my GP about Tamoxifen if the breast tissue thing persists.

My usual starting point is to try not to take any drugs for anything but to let my body work its way back to some sort of equilibrium. However it does seem to be taking a long time to do this and in fact I am still not sure if my body has finished reacting to the radiotherapy!

Thanks though.

Hi LJ

I absolutely can relate to it.

I have Increased frequency, painful burning sensation when peeing, reduced flow, but worst of all, urgency. Time from feeling the need "to go" to actually going is 5 to 20 seconds. It's difficult to leave the house with confidence. After RT I was pretty much ok, but then I had BT 9 days later. It's only 5 days since LDR Brachytherapy, but I hope this resolves quickly. I’m on Tamsulosin.