I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Three years later still having major side effects

User
Posted 01 Dec 2021 at 14:22

It is almost 3 years following my diagnosis of prostate cancer following a routine blood test for gastrointestinal issues not related to the cancer.

Due to previous surgery in the 1970's it was recommended I have hormone therapy, brachytherapy followed by a course of radiotherapy.

Other than some side effects from hormone therapy everything went as expected although I was having gastrointestinal and anal issues at the time but again these were not related to the cancer and my consultant was happy to proceed with my cancer treatment.

I started have pain in my pelvic area after about six months and was eventually diagnosed with radiation Proctitis as a result of my radiotherapy.

Over the last 12 months I have  been experiencing increased pain and been diagnosed with suspected pelvic floor dysfunction or a rectal prolapse and currently being seen at Wythenshawe hospital by a consultant gastroenterologist who also specialises in problems following radiotherapy.

I have been misdiagnosed on a few occasions and been seen by a number of specialist including a colorectal specialist all are at a loss to what the problem might be.

I have undergone several test and procedures including ultrasound scans which found inquinal hernias in my left and right groin.

I had no symptoms following my prostate cancer diagnosis but now get severe pain both when urinating and passing stools and I am in  permanent discomfort in the pelvic region.

Now I am seeing the specialist at Wythenshawe they are arranging a barrage of tests and procedures many which have not been done before and following a blood test it was found I had low B12 which could explain some of my symptoms but not all.

I realise my case is complicated but does my story ring a bell with anyone else who has been through a similar experience.

By the way I have been checked out including a flow test, urine infection test and a ultrasound scan by my urologists who says that the procedure to cure the cancer was successful and my PSA is now low.

 

 

 

 

 

User
Posted 01 Dec 2021 at 22:12

Touch wood, I have not suffered any bad side effects from my treatment other than what one expects from hormone treatment.

Dave

User
Posted 01 Dec 2021 at 22:34

Alan,

You have a set of symptoms which are loosely referred to as Pelvic Radiation Disease. Radiation cystitis and radiation proctitis come under this heading, as does general pelvic pain after radiotherapy. Unfortunately, the NHS doesn't handle PRD very well, as it doesn't fit under any one discipline. You could try talking with your clinical nurse specialist and ask what provision there is for handling PRD, but don't be surprised if there isn't an answer.

You might want to look at the Pelvic Radiation Disease Association's website.

User
Posted 02 Dec 2021 at 00:07
Good that your cancer treatment seems to have worked but sorry you are suffering such affects. Certainly we have had men reporting radiation problems beyond those often experienced during RT and for a few weeks afterwards and passing mucus for maybe up to 6 months after treatment but I think the degree to which you are affected is pretty unusual.

I wish you well and hope the specialist will find some way of ameliorating your situation.

Barry
User
Posted 02 Dec 2021 at 08:18

Alan 

Salvage RT had a detrimental effect on my bladder, it started a few weeks after SRT. My bladder capacity is now less than 20 mls, I can't even fill a sample tube. I now have a permanent catheter, urinary diversion surgery would be very risky due to RT damage to the organs they use for the diversion. I don't have anything like you describe.

I got in touch with PRD as mentioned by Andrew and they did give me some help and good advice. Unfortunately by the time i got a diagnosis my bladder was beyond help.

Severe side effects happen to around 5 percent of RT patients.

Hope you find a resolution to your problems.

Thanks Chris

User
Posted 02 Dec 2021 at 21:55

I was recently referred to St Marks Hospital in Harrow for Pelvic Radiation Disease.  They were recommended by the PRD association. I had a SEHCAT scan to measure bile salt reabsorption and a colonoscopy.   They've put me on a daily loperamide and a daily normacol sachet.  I'm no longer pooing myself on a regular basis. 

 
Forum Jump  
©2024 Prostate Cancer UK