Late onset radiation cystitis

Radiation cystitis and radiation proctitis (pain or bleeding from rectum due to radiation burns) are rare as significant quality of life side effects, but I think they're more common as incidental side effects without impact on quality of life. (I have minor painless radiation proctitis, which has no impact on my quality of life.)

In both cases, he does need to be checked out that the blood is just due to this and not something more sinister, with a flexible cystoscopy and a sigmoidoscopy, but if it is radiation cystitis and radiation proctitis and they aren't impacting quality of life and not bad enough that he's becoming anemic, then usually no treatment is required.

So he should be asking for a referral to urology for flexible cystoscopy, and referral to colorectal for a sigmoidoscopy. This will also depend on his health and life expectancy, as the older you are, the more they worry about damaging you by sticking things inside you and the less likely they are to find something which needs treating to increase your lifespan, but that's for the consultants to weigh up when they see your dad.

I cannot imagine tea and coffee having any impact on this. He should get the constipation fixed - straining could increase the bleeding.

Edited by member 25 Jan 2021 at 10:23  | Reason: Not specified

Deejay

I suffered with radiation cystitis to the point where it has had a detrimental effect on my bladder. I now have a Catheter for life and a bladder capacity of an egg cup. It is rare and as such is not understood by many medical staff. My RT department blamed urology and vice versa. My first symptoms were blood in the urine followed by lots and blood clots, tissue and debris. 

Make sure you are referred to a specialist who understands pelvic radiation treatment. 

Thanks Chris

The level of severity of symptoms is graded by Radiation Therapy Oncology Group (RTOG) as follows:

Grade 1 - any evidence of epithelial damage or atrophy, telangiectasia, microscopic hematuria

Grade 2 - any moderate frequency, generalized telangiectasia, intermittent macroscopic hematuria, intermittent urinary incontinence

Grade 3 - any severe frequency or urgency, severe telangiectasia, persistent incontinence, reduced bladder capacity < 150 mL, frequent hematuria

Grade 4 - any necrosis, fistula, hemorrhagic cystitis, reduced bladder capacity < 100 mL, refractory incontinence requiring either catheter or surgical intervention [1]

Edited by member 26 Jan 2021 at 09:36  | Reason: Added definitions

Denise

Unfortunately by the time I got to see one of the top urologists in the country,I was too far gone. Hyperbaric oxygen treatment is one suggested treatment but I doubt many of those are operating during the current covid situation.

Hopefully your Dad's situation is not too severe. The pelvic radiation disease Association gave me some help a few years ago.

Nice too see you are looking out for him.

Thanks Chris

Hiya Denise,

Just to reiterate what Chris mentioned about contacting the Pelvic Radiation Disease Association. I phoned them in December 2019 due to blood in urine followed by a series of clots. They were really understanding and knowledgeable, and gave sound advice. They gave me the name of a consultant in my area who specialises in such cases, but fortunately the symptoms subsided so I didn’t need to make contact. I did have a cystoscopy however, which diagnosed radiation changes (damage) to the neck of my bladder. The one thing I’ve done is drink copious amounts of herb tea just to feel I’m doing something to help it.

All the best, Paul.

Radiation cystitis is far more common than radiologists will admit. I have suffered from It with occasional substantial bleeding. I am receiving treatment for it which consists of monthly installations into the bladder of a product called Cystistat, its just 50 ml of clear liquid through a narrow gauge catheter, I have been trained to do the procedure myself at my urology dept--its not a final fix, but I'm certain that with episodes of treatment followed by gaps, it will keep the problem under control. Unfortunately many urology depts will not provide this service, they claim it does not work whereas other professionals see positive results--SOME CLINICIANS ARE QUITE BLINKERED