The Pelvic Radiation Disease Association – a voice for patients

Claire Poole

Claire Poole

Radiotherapy is an effective treatment for pelvic cancers but it is not widely known that the radiotherapy can affect healthy tissue and bone causing severe pain, incontinence and distress.

Here, Claire Poole explains what it’s like to have Pelvic Radiation Disease (PRD) and why she risked her life to raise money for the charity which has given her so much support.

 

 

Each year, in the UK, about 30,000 patients receive radiotherapy for pelvic cancers, half of whom are left with altered bowel and bladder functions that drastically impede a return to normal living.  Symptoms of severe pain, nausea and vomiting, incontinence, damage to bones, gut/stomach issues can appear shortly after treatment, or months – even years – afterwards.  Patients who report problems to their oncologists, surgeons and radiotherapists are often told that “We’ve cured your cancer so what’s the fuss about?. This response is common and also unacceptable. There are effective ways to manage late effects of pelvic radiotherapy (now recognised as PRD) and patients fortunate enough to get appropriate treatment report an average 70% improvement in symptoms.

Sky dive 1

Risking my life for PRDA

On Saturday 18th June 2016, I threw myself out of a plane at 15,000 ft. I harnessed my fearand put my life in the hands of the fantastic team at Go Skydive in Salisbury to do a tandem skydive, plummeting to earth at 125mph. I did this wacky thing to raise money for the Pelvic Radiation Disease Association (PRDA).

PRDA is a very small charity run by volunteers. The charity works so very hard trying to raise awareness of this condition among health professionals. PRD, the late effects of pelvic radiotherapy is not widely recognised by our own GPs or indeed the NHS. It has become a big part of mine, my partner, my two children, my family and friends’ lives.

I was diagnosed with cervical cancer four years ago, and had intense treatment consisting of chemotherapy, radiotherapy and internal radiotherapy. Thankfully, due to the treatment received I am still here, however, the radiotherapy treatment has changed my life. Yes it killed the cancer, but it also killed my insides.

Radiotherapy burns, it burns everything it touches. So while radiotherapy is highly effective in treating pelvic tumours, due to the nature of the treatment, it can affect tissues and other organs in the pelvic area. During my treatment not only were the cancer cells burnt and killed, but also all my healthy cells, tissues, bowel and bladder badly affected. Any cancer patient who receives radiotherapy to the pelvic area, will probably at some point experience the late effects of the cancer treatment. This could occur anything up to two to three years or longer after treatment. If this happens, as it did to myself and many other patients, we become unable to enjoy our cancer free lives. Our quality of life is hugely affected, from severe pain, nausea and vomiting, incontinence, damage to bones, gut/stomach issues. All of which can be either minor or cause you to be housebound or even hospitalised. All of which I have, and do experience.

I am a patient at the Royal Marsden and have been now for a few years. A very special man put me in touch with PRDA, a Dr Jervoise Andreyev. This wonderful man is a consultant gastroenterologist, who specialises in PRD and started PRDA. Dr Andreyev has made a huge difference to my life. Without the care of this man and his team, I would not be where I am today. I am not cured, but I am on treatments, have made lifestyle changes and I’m completing a medical trial. All with the help of Dr Andreyev, his team and PRDA.

Why did I raise money for this charity that many of you have never heard of?

I want to get PRD noticed and talked about and to publicise PRDA, to enable PRDA to help and support the thousands of other patients like me, who thought it was OK and normal, to have their quality of life taken from them just because they have had cancer. It is NOT OK. After all, we have fought so hard to beat cancer, surely we deserve to be given the best treatment and support possible, to try and live the rest of our lives happy and healthier with our families and friends?

Thank you so much for taking time in your day to read this. Please, please help me and others to raise as much money as possible to keep this wonderful charity going. To continue helping the thousands of brave, strong, beautiful women and men who need the support of PRDA in their lives”.

About the Pelvic Radiation Disease Association, (PRDA)

logo for PRDA

PRDA is  a support organisation of patients, carers and medical professionals formed in 2007 became a registered charity in 2012 (no 1147802).  We currently have 5 volunteer Trustees and 1 part-time self-employed Administrator. We publicise and increase awareness of PRD and provide support and advice to patients suffering from consequences of treatment. We inform and educate cancer nurse specialists, radiographers, oncologists, gastroenterologists, gastrointestinal surgeons, gynaecologists and urologists, about the symptoms and effects of PRD and provide clear and simple advice on how to refer patients for specialised help and treatment.

PRDA runs a telephone help line and an ‘email a nurse specialist’ advice service and are backed by a multidisciplinary team of experts to advise us on medical questions. Our website www.prda.org.uk provides support and advice for sufferers and we receive enquiries from around the world. The charity hosts support meetings covering such topics as diet, exercise, self-help, sexual health and radiography addressed by specialists on these topics – our aim is to provide help to enable people to cope better with the consequences of their treatment.

We present the charity’s work and objectives at major conferences throughout the UK via information stands and talks by patient ‘experts’ and have designed and produced literature for both patients and health professionals, working closely with other charities, particularly Macmillan Cancer support, Prostate Cancer, Beating Bowel Cancer, Bowel Cancer UK and Jo’s Trust (cervical cancer). These partnerships are essential to our work and together with Macmillan we chaired a Pan Pelvic Cancer committee of likeminded charities. In 2015 this resulted in a highly successful programme of training days for specialist helpline nurses from major cancer charities, an activity we strive to continue. We currently have an ongoing project in collaboration with Macmillan Cancer Support to list all gastroenterologists in the UK prepared to see patients with PRD.

PRDA has an active Facebook group with members both from the UK as well as other parts of the world, in particular the USA. This is a closed group and applications can be accepted via the PRDA website.

www.prda.org.uk

Registered charity number 1147802

(England & Wales) and a company limited by guarantee number 7998409

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