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Cystitis 18 months after radiation

User
Posted 23 Jan 2025 at 19:51

To cut a long story short:

- I had salvage radiotherapy to the prostate bed in mid-2023, a year after surgery. 

- Subsequent PSA scores have all been under 0.01.

- In October, I noticed a couple of incidents of blood in the urine. In November, that became more frequent, with discomfort, but not pain, in the unitary tract region.

- I was eventually referred to the Marsden under the two week rule to check for bladder cancer. Various tests and a flexible cystoscopy revealed a very red bladder neck and some lesions.

- Earlier this month, I had a rigid cystoscopy and biopsy to assess whether I indeed had bladder cancer. I took comfort in the surgeon saying that he did not think that was the default. Happily, the result has just come back as no malignancy.

But I've now got to deal with radiation cystitis, and lots of blood in the urine as a scabs from the biopsy start to heal. So no strenuous activity for a while and hope that the cystitis abates. Has anyone else had a similar journey?  

User
Posted 23 Jan 2025 at 22:01

 Superhoop , the time scales are quite different and radiation cystitis comes in vary stages. Mine was very severe, I was passing blood ,blood clots and tissue.Hyperbaric oxygen treatment is one of the few recognised for severe radiation cystitis. I was given a couple of names of who to see ,one of which is at the Marsden, I will message you his name. 

By the time I was diagnosed my bladder was beyond help, hopefully yours can be sorted 

I would stress severe radiation cystitis is quite rare.

Thanks Chris 

 
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