poldeb

[Poldeb]

I had radiotherapy for cervical cancer in 2009. I now have chronic symptoms including diarrhoea and vomiting that are consistent with pelvic radiation disease. The hospital has ruled out cancer, diagnosed radiation proctitis but offered no treatment. My GP has nothing to offer. I would like to be referred to a hospital that offers some treatment. I am mobile and travel on public transport . I am in north London. Which hospital or clinic offers a service that I can request my GP refers me to?

[Hopeful-one]

Good morning PoldebI'm sorry to hear of your troubles. I would try the Royal Marsden. When I was seen there Dr J Andeyev gastroenterologist was there, and it was really him who alerted everyone to what became known as PRD, and formulated an algorithm for diagnosing various typical symptoms, and devised some useful forms of management. He is not on the staff there now as far as I know, he moved to Lincoln I believe, though I think I saw recently that he may still have clinics in London, not sure. Anyway there will be a team at RMH which will be continuing his work, I think the dietician Clare Shaw who I saw is still there. She helped me to work out how much fat I was eating. BUT this is only relevant to people with Bile Acid Malabsorption, and that has to be tested for, not everyone who has had pelvic radiotherapy has BAM because it depends on whether the bottom end of the small bowel was in the field, and whether that area was damaged.

Good luck with it all.

[Cothow13 in reply to Hopeful-one]

Thank you so much for all your information, I suffer too from radiotherapy that I had for cerivical cancer in 2008. I'm sorry Poldeb that you are suffering too.A clinic has been set up in Northampton for radiotherapy damage & it was so nice to be heard. My advice was more about too much fibre than fat, so I will investigate this further.

Thanks again xxx

[456Sally]

What sort of doctor have you seen? The GPs don't seem to know about it. The Colorectal man just shrugged. The Gastro doc was really helpful. My OH (Radiation Proctitis due to treatment for Prostate Cancer) was give two treatments of APC several months apart and a third was booked in case he needed it (which he didn't). So the bleeding is, at last, stopped (it went on for years and he was really anaemic). He now has occasional flare ups of his Radiation Colitis (which they forgot to tell us about) diarrhoea and sickness which we grip with Loperimide (Imodium) - sometimes three a day. The other treatment they can do for Proctitis is Formalin but I think they need to find a specialist in that. My OH had that once - we were told you often need two or three treatments but they wouldn't give him another and it didn't work for him. Good Luck

[AT73]

UCHL have an Intestinal Failure Unit and they see patients with PRD. Hope this might be of help.

Good luck!

[Gtuva]

There is a listing on the Prda website of UK clinics, prda.org.uk/late-effects-se.... Good luck.

[jude-the-obscure Community Pioneer]

You have had some good advice. PRD is a miserable condition and it is no consolation to be told by well meaning doctors that "you are still alive"

I have learned to accept the situation and manage the symptoms. A year ago they opened a late effects clinic at our local Cancer Institute. It was a breath of fresh air to be heard and accepted and given sound, informed advice. Hope you can get i touch with the right people. Macmillan are running the pilot scheme in Bristol, but hopefully the service will become part of the mainstream NHS

Best wishes

Jude

[Poldeb in reply to jude-the-obscure]

thanks to everyone who replied