We are currently updating this page with longer individual stories.

You are welcome to submit your own story, whether it is you or someone close to you who is affected by Pelvic Radiation Disease (PRD). You can remain anonymous if you wish. Sharing stories really helps people to know that they are not alone.

Keith is happy to share his story because, while he had been through a difficult time with PRD, he has a ‘happy ending’ and is back to enjoying life with his wife and family.

 

 

 

 

Here is Rhea’s story. She was 34 when diagnosed with locally advanced cervical cancer in 2016. After treatment, which included chemotherapy, radiotherapy and brachytherapy, she experiences many symptoms of PRD.

 

 

 

 

 

PRDA Trustee Tim shares his story of how taking up running and getting involved with PRDA have helped him in all sorts of ways following his radiotherapy for prostate cancer.

 

 

 

The following are quotes from people affected by PRD:

 “I simply had no quality of life. 3 weeks out of 4 I would throw up, followed by days of non-stop diarrhoea. I would become dehydrated – had to be put on a drip. I could not make any plans or appointments as they frequently had to be abandoned. If I had to travel anywhere, I had to go without eating for days before. I joined Dignitas, as I simply did not have a life worth living.” 

“Dr Andreyev has helped me most and I was lucky to have been referred to him so quickly. The normacol sachets helped somewhat but since I was on the HOT II trial my bleeding has improved greatly. I will not know for some time if this is due to my having been given oxygen treatment until trial results are published. My quality of life has improved so much since I have received treatment for PRD.”

“In the early months of 2009 I received 27 units of blood by transfusion……The first treatments were unsuccessful but he persevered and finally laser treatments (5 courses) was successful. Previously I had been confined to the house but Dr Andreyev gave me my life back and now I am able to lead a social life.” 

“I know that if I pig out on fatty food I will suffer for it!! I at least have control now! And I know what is causing the problem which has taken away the fear of a possible recurrence of the cancer. It was very helpful to me to know the cause of my diarrhoea and learn how to manage it. I no longer have the occasional “accident” that I had previously experienced. I would advise a friend to see a gastroenterologist. GPs seem to be unaware of ongoing problems.”

“Understanding the problem makes it easier to cope with”. 

“I was told damage caused by radiotherapy was irreversible. No one was aware of a specific problem. I was given the feeling that I was lucky to have got over cancer. I felt very isolated, vulnerable. It has made all the difference to know that there is a specific causes for the symptoms, that other people suffer from the same problems and that there is a treatment. I felt I was being taken seriously.”

Modified: 5th May 2019

[addtoany]