Family Seeking Support Desperately

Former Member
Former Member
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Hello there fellow forum,

We are a family in dyer need of advice and support!

My dad was diagnosed with prostate cancer ~7 years ago and under went surgery and radiotherapy. Since then it had been pretty smooth sailing and with regular PSA checks which were going in the right direction and we thought we were in the clear.

In the last 2-3 months he has intermittently been admitted into hospital with the following:

- blood in the urine

- excruciating pain in his bladder (blood clots that are causing blockages)

we have been told that we are dealing with radiotherapy damage that keeps causing lesions on the bladder lining (the cancer has not returned nor has it moved to anywhere else in the body - thankfully). We are on our 4th round of surgery to try seal these lesions. 

My dad is then sent home catheterised and we never even hit a week at home before he's needing to seek medical attention.

We fully understand that the nurses, HCAs and doctors are all working hard and under a lot of pressure, but as a family we have all reached a point where we feel the hospital isn't able to get this under control and it is all starting to affect us in different ways.

Has anyone else gone through this further down the line after their treatment?

Can anyone advise what support or action they took after if problems arose as a result of their radiotherapy?

any support is very appreciated at this point

Thanks in advance 

  • Sorry to read about your Dad, hope things improve for him.

    I can’t answer your question but hopefully others will come along.

    Ido4

  • Hi

    After a colonoscopy I had a few months ago, after Telling the doctor I had repeated anal bleeding. While they scanned the showed me that there was blood seeping through the lining, a few weeks later I got the report of radioactive prostitis caused by the radiotherapy. I was told if it persisted they would operate. Fortunately it has not come back yet, but I’m taking ferrous sulphate tablets which might be the cause of it stopping, although I don’t know.

    Stay safe 

    Joe

  • Former Member
    Former Member in reply to joeven

    Hi Joe,

    Thank you for sharing your story with us. We are going to look into the tablets you've mentioned to see if it's something we can introduce. Glad to hear they are helping you!!

  • Former Member
    Former Member

    Hi Sara, I am normally found on the incurables section but pressed a button and ended up here. Not posted on here for years.

    I had and have the same troubles as your Dad and I have had a few procedures over a couple of years.

    It is the radiotherapy that has caused the damage, very common it seems.

    I had a cystoscopy about a year ago and they cut away the scar tissue from my urethra but did say it will return. It did so about 3 months ago, so back in for another cystoscopy.  This time they did not cut away any scar tissue away but dilated the urethra up two sizes to let things flow a bit easier.

    I am stillj seeing scabs and pinkness in my urine, occasionaly upon peeing it makes me hold my bits and go ouch but it appears to be quite stable.

    I hope you are on Tamusolin to help you pee better but the main thing is to drink gallons every day. This will keep the system flushed out so you don't get scabs or clots hiding up your tubes!

    I hate water but I mix it with Ribena, bit of warm water and not too unpleasant.

    I am not an expert on this but it seems to work for me. Best of luck to your Dad.