Prostate cancer radiotherapy side effects.

[Gingerurgent]

I’m a seventy seven year old who had a radical prostatectomy eight years ago.

Following one of my regular PSA tests the result showed, after scans in September 2023, a return in the prostate bed and adjacent lymph nodes.

Began hormone implants straight away followed by twenty doses of targeted radiotherapy.

PSA now down to near zero but I've been placed on two years hormones and increased PSA testing.

Now five months after completion of radiotherapy still experiencing “urgency” I’m managing to avoid accidents with careful timing of meals and appointments but I am looking for advice re the chances of improvement, dietary advice and the experiences of similar patients.

I had to fight with my oncology team and GP practice who have been effectively left to pick up the post treatment care. Immodium helps but is not prescribed automatically !

I can handle the side effects of the hormone therapy, but the pelvic damage effects were unexpected, not sufficiently explained at the time, and a real quality of life killer.

[AlfredSaxon]

Like you I had external beam radiotherapy after radical prostatectomy, and suffered bowl problems because of the treatment; not urgency but passing of blood and mucus, and emptying bowels twice a day instead of just once. The radiotherapy to the bed of the prostate was offered because of an increase in PSA; in hindsight this was a mistake. After two years the bowel problem has virtually cleared, incidently my problem was called radiation proctitis. Clinicians do not usually warn of the long term bad effects of radiotherapy to the pelvic region, I sometimes wonder if the so called cure is worse than the disease; this lack of transparency is criminal. Good luck with searching for help

[Housebound]

I also had radiotherapy that had spread to the base of my spine and pelvis. There was no warning about side effects and since then (3years ago) I have suffered proctitis that has got worse over the years. The enterologist has told me that I cannot have any more sigmoidoscopy treatment because the wall of my colon is now too fragile. He has recommended hyperbaric oxygen treatment as a possible cure.

Now waiting for results.

Good luck

Housebound

[D_Cymro]

I had radiotherapy to my prostate bed and a clutch of pelvic lymph nodes about 18 months after my prostatectomy. The prostate bed treatment was precautionary as I had an aggressive cancer that was already spreading when discovered, although my surgical margins had been clear. I had three cancerous nodes removed during my surgery, and then at least six more treated by the RT. This was in 2019.

My bowels have been knocked sideways, but fortunately only in terms of sensitivity (I have to be a bit careful what I eat) and frequency (I go about three times as often as before). I also have urinary issues, but these are manageable with a bit of pre-planning.

The best thing I can suggest is that you get referred to a so-called Late Effects (LE) clinic, often an offshoot of NHS hospitals. I am helping on the patient side in my own Trust here in Oxfordshire, Wilts and Bucks. They can advise on the best ways to manage symptoms so you can function as normally as possible. The Pelvic Radiation Disease Association (PRDA.org.uk) has a Resources page that has lots of useful information and onward links, including LE services.

I hope you can find help somehow.

[Gingerurgent in reply to D_Cymro]

Thanks for your prompt reply,

Heading to the PRDA site for a “rummage”!

At first sight Late Effects are non existent in the North East but the Sympton Checklist looks to be a very useful tool for quickly getting across the effects when talking to my GP who seems a little vague when asked for immediate advice.

Thanks