Severe Rectal damage after radiotherapy

Hi Willis422, I had salvage radiotherapy in the spring of 2017. I now have unpredictable fecal leakage but am having to wait a long time for a hospital appointment. I have been on a list for over a year now. I’ll be interested to see if anyone else has been through this and had successful treatment. Sorry I can’t answer your question. 

This is what I was most worried about - bowel and bladder problems which is why I had fiducial markers (3 tiny gold seeds about the size of a grain of rice) inserted into the prostate to target the RT more effectively and hopefully avoid any collateral damages to the area around the prostate.  I already had bladder problems unrelated to the prostate and had had half my sphincter muscle removed about 10 years prior to my HT and RT. so bowel problems too.  Thankfully that seems to have worked thus far.  In the light of such long waiting times that if you can afford it you pay to have a private consultation with a consultant about this - consultations vary in price from £150 - £300 - any tests done will cost more but once you have seen a consultant you can go on higher up his list and then access help, tests and scans on the NHS.

All the best to you both.

Thanks freefaller, once the prostate is removed there isn’t anywhere to put fiducial markers, the bladder tends to drop because the prostate isn’t there anymore and the rectum moves forward. I was scanned each day to make sure I was in the right position but the rectum has clearly been damaged unfortunately. I might think about a consultation to see if it can speed things along. Thanks again.

Hello Willis. The lining of my bowel was damaged after 6 weeks of R. T. Bleeding, mucous and faecal incontinence. I was advised it would settle but it didn't. Was referred to Gastrologist and the outcome was a relatively new treatment called Purastat. This involves 4 sigmoidoscopies at 4 weeks apart and the Purastat is inserted to the lining of the bowel. I had the first treatment today. Consultant said the early results of patients receiving the treatment are 'promising.' I was willing to try anything that may help as it doesn't half affect daily living. I also have a card supplied by Macmillan which you can show to shops and busnisses to use their facilities if no public toilets. Have found it very useful. 

Best wishes, Graham. 

Sorry didn't realse I had replied to you meant to reply to Willis422.  No if the prostate isn't there there is no where for the rest of the organs to hide.  I was lucky in that my urologist had told me that removal of the prostate would probably cause me more problems - because of my existing bowel and bladder problems so went for RT I had also listenened to someone give a talk at our RT centre social evening about having Rt after removal of the prostate before that and thought I don't think that is for me if I can avoid it.  Luckily my rad.onc did say that he would operate if the RT was unsuccessful - its not often you find a oncologist who can or will operate after RT I think I have only heard one gentleman say on here that he has been operated on after RT and he was going to the same hospital as I was so likely with  the same team.  Thankfully I haven't needed further treatment.  I do sympathise with all of you having bowel and bladder problems after been operated on and/or after RT as I had and have problems without the added extra of RT.  Hope you can get a consultation soon.

Also worth getting your Radar key - £4.99 on Amazon of about that so you can used the locked disabled lavatories too.  Be aware that some places still refuse to let you use their lavatories as did a lot of restaurants refuse to give my brother-in-law smaller portions after his gullet cancer operations - even though he had the MacMillan Card. I also have a card from the Bladder and Bowel Assoc. from before my RT.

There is a PuraStat trial which might be of interest to anyone with serious rectal bleeding.
https://www.prda.org.uk/purastat-study-for-radiation-proctopathy/

I knew you were replying to Willis, I was just thanking you for the advice generally. 

thank you! 

At present I am trying to organize visits from other family members who live abroad one in March from daughter-in-law and grandsons from Florida next month and one in July from my Brother and his family from South Africa - I would far rather organize this forum as have just found out neither of them have given us correct info for collection and drop off at air port in fact wrong air port which means an extra hour's traveling (!) next month and first said they were not coming down to us but to other son in Reading or sister in Portsmouth and now they are coming here - we have only been here 5 years so have to get the shelves, blinds and pictures put up now.  My wife is pleased about that because she has been nagging me for all those years but what with knee replacement, Atrial Fibrillation problems and two cataract operations, and during Covid not being able to order or buy certain materials it's just never got done - oh and laziness on my part too.  this is going to be a busy few weeks!

You have a lot going on! Hope it all goes well and that you are doing ok.