Patient Stories

Patient Stories

Please find below some supporters of Action Radiotherapy who have shared their journeys.  If you have a story to tell please contact us on admin@actionradiotherapy.org

Judith Potts

Judith Potts

Judith Potts was diagnosed with breast cancer in 2008 at the age of 59. Thanks to a clinical examination from her Consultant she was given a biopsy, despite both her yearly mammogram and scan reading as clear. Her treatment included a wide local excision (lumpectomy), followed by six weeks of radiotherapy in May-June 2008 and then five years of Tamoxifen. She feels passionately that when being treated with radiotherapy, the whole procedure (from the tattooing onwards) should be explained very carefully and that you should take someone with you to help you navigate what is going to happen and the potential side-effects.

In 2010 Judith was asked by The Telegraph to write a piece about her experience and, particularly, about the way The Breast Cancer Haven in London had helped her recovery. She feels that as well as being staffed by people who completely understand what a diagnosis of breast cancer means, the Centre is a true Haven in offering free complementary therapies of every type, nutrition advice, counselling etc. After the article, came the Blog, which morphed into a Column in March 2015 – 5 years, almost to the day, after the first piece appeared in The Telegraph. She writes for the Telegraph pro bono so that she can help open up a dialogue about cancer. She writes about new research and treatments, the work of charities and tries to promote the understanding and need for early diagnosis and her articles can be found here.

In May 2015 Judith wrote an article about the chronic underfunding of radiotherapy and mentioned the work of Action Radiotherapy. You can find the article here 

Emma McCloskeyEmma McCloskey

Emma McCloskey was diagnosed with a 7.7lb grade 3 mixed soft tissue sarcoma in September 2012 at the tender age of 29. She had surgery in September 2012 which involved the removal of 1¾ muscles from her right thigh. This was followed by intense physiotherapy and once her scar had fully healed, she had 30 days of radiotherapy at Clatterbridge Cancer Centre – a 90 mile round trip every day for less than 60 seconds of treatment!

In September 2013 she discovered that she had three tumours on her lungs. She had 6 cycles of chemotherapy followed by two surgeries to remove the remains of the tumours. She has been cancer free for over a year now. She has shared the details of her experiences so that others can really understand what it’s like living with cancer. If you’d like to read her story in more detail, she set up a blog about her experience which can be found here http://dizzytix.com/

Emma actively supports Sarcoma UK and the Clatterbridge Cancer Centre Charity. She has featured in Sarcoma UK’s quarterly magazine and has allowed her medical team to use her case to share and raise awareness both at the British Sarcoma Group Conference and in the British Medical Journal.

Me & Pip t-shirts

Angharad Underwood

Angharad Underwood was 42 years old when she was diagnosed with breast cancer in December 2014. In January 2015 a lump, the size of a pea, was removed and the surgeon took some lymph nodes. The results were good in that the lump hadn’t spread, but bad in that it was undecided as to whether she needed chemo. After days researching and meetings with the oncologist she agreed to 6 sessions of chemo followed by 4 weeks of radiotherapy.

After diagnosis, she felt compelled to start a blog about her journey. The blog started as a form of private comfort, but she has been contacted by so many fellow patients, family members and friends of cancer sufferers that have found it such a great support that it has now gone public. She remembers her husband saying “If your story touches one person and makes it easier for them, then you know you have done the right thing.” You can find her blog here

Whilst undergoing treatment she has been working on her business and also organised a charity event for Velindre with a view to ‘giving back’. She has had fantastic support from Macmillan who have donated money for her travelling costs to Velindre and she would also like to mention the great treatment she has received from St David’s Hospice and all the staff of the NHS.

She is currently about to complete her radiotherapy and would very much like to have her hair back!

Alison Young

Being told that she had two types of breast cancer but that – good news – one of them wasn’t life threatening wasn’t exactly the best way to end Alison’s summer holidays in 2015. As a single mum of an eight year old, it was a terrifying time, and it cast a long shadow over all the plans she had been making for the future. She was keen to get started on treatment as soon as possible and sighed with relief when she learnt that the cancer hadn’t spread beyond breast and lymph.

Unfortunately though, six months of chemotherapy didn’t shrink the 4cm lump in one breast and there was still a lump of considerable size in the lymph. So, after major surgery, she started on yet more chemo, with a month ‘off’ in order to have 15 sessions of radiotherapy (using the DIBH technique). The second chemotherapy has extended her total treatment time by six months so she’s now been going for nearly a year and still has to have the follow-up surgery. A long journey. But this time around, she’s able to keep her hair and even took a longed-for summer holiday with her son. So many good things have come out of this journey. She’s very excited about planning for the future and all kinds of exciting ventures. She’s been writing about all the amusing things that have happened on her treatment journey and may some day publish a book. Watch this space!

If you would like to watch a video of Alison’s experience, please click here where you will be taken to the page of information on DIBH. Once there, the video link is at the bottom of the page.

robert-croft-liver

Robert Croft

Robert Croft is the first patient to take part in The Prostate Advances in Comparative Evidence (PACE) trial at The Clatterbridge Cancer Centre. As well as examining the surgery versus radiotherapy option, this trial involves investigating whether the number of radiotherapy treatments using SABR (administering greater doses with higher accuracy) can be reduced so that participants have just five sessions, as opposed to the 20 recommended.
Robert was told about the PACE trial and was asked to decide what suited him better, surgery or radiotherapy. He decided to go ahead with the trial as the chance to have a shorter course of radiotherapy treatment appealed to him. Robert was the first patient to take part in it, undergoing five radiotherapy treatments in a week at the hospital in Merseyside.

Robert has been impressed by his treatment and the staff at The Clatterbridge Cancer Centre and has stated that “This is a place where extraordinary things happen for ordinary people.”

Mark Davies

Mark Davies was diagnosed with a lower rectal tumour in the summer of 2003. His oncologist gave him 2 options, a permanent stoma or 12 months to live. Understandably, Mark wasn’t happy with either option. Luckily, and quite by chance, he found out a friend’s neighbour was the only oncologist in the UK doing Papillon treatment. After consulting with him, the decision was to use Papillon after first trying to shrink the tumour with radiotherapy and chemotherapy. The tumour did shrink and so Papillon x-ray brachytherapy was then applied to it. This involved the delivery of high dose, low energy radiation directly to the tumour only. Microsurgery afterwards discovered that the tumour was completely eradicated and Mark has been cancer free since then.

Mark now lectures at universities, charities and hospitals across the world, delivering advice and information on subjects such as patient choice, survivorship issues and the short and long term effects of radiotherapy. He also supports various survivor groups and chaired the Late Effects of Pelvic Radiation clinical group for 2 years. You can read more about his experience in his book ‘Saving my arse: Bowel cancer: A survivor’s story’.

His lasting advice to anyone diagnosed with cancer is to give yourself time to make a decision on your treatment. Do some research into your diagnosis, sign up to blogs where patients share their experiences and join any support groups in your area.

If you are interested in further information on Papillon please visit http://contactpapillon.com/, Europe’s first patient led Papillon Radiotherapy website.

Kurt Jewson

Kurt Jewson was diagnosed with locally advanced prostate cancer at the age of 44 in September 2015, his symptoms having been dismissed a year earlier, as a urinary tract infection, by his GP. After spending a week or so seeing lots of doctors with grim faces and eager fingers, he decided upon the option of having his prostate removed by a robot and his cancerous gland was whipped out within the month. Unfortunately, despite great surgeon/robot teamwork, Kurt’s bowel was perforated during the procedure and he was rushed back into hospital 3 days later with septicaemia.

The next 6 weeks were spent in and out of critical care and it was touch and go for a while. After further complications, the decision was made for Kurt to undergo another operation and have a temporary ileostomy whilst they sorted out his various issues between bladder and bowel.

Soon after, he posted a photo of himself on Facebook, in just his pants, revealing his scars, ileostomy bag and catheter, in a bid to raise awareness of Prostate cancer amongst his friends. (It affects 1 in 8 men). The post went viral being shared over 250 000 times with a reach of 25 million!

As Kurt was deemed to be high risk, with a particularly aggressive cancer, and being so young, his medical team decided to throw the book at him, treatment wise. Kurt quite literally has had the lot: hormone therapy, prostatectomy, chemotherapy and now radiotherapy to the prostate bed, in the hope that this will all end up being curative.

Kurt is married to Lucy, has two sons, and is a co-founder of Ethical childrenswear brand, Frugi.

Edward Challoner

Edward Challoner

Edward Challoner was diagnosed with secondary tumour of the lung in 2013. The primary cancer was a skin lesion on his head and was treated with surgery and a skin graft. As it was located where surgery was not possible, the lung cancer needed specialist treatment. He was offered the change to take part in the revolutionary CyberKnife treatment at The ‘Queen Elizabeth Hospital in Birmingham. The treatment was successful with follow up appointments confirming that the cancer had been destroyed.

He continues to remain in good health and would like to thank the staff at the Queen Elizabeth hospital for the fantastic treatment he received there. He is keen to stress that he would not be here today without the intervention of the medical teams.

dave-ardron[1]David Ardron (Former Trustee)

Action Radiotherapy Trustee David Ardron’s parents were both treated with radiotherapy and he feels passionately about the need for further investment in radiotherapy research.

His mother is still alive almost 20 years on from major surgery and radiotherapy treatment for breast cancer in 1994.

“We can now monitor images of patients as they receive radiotherapy in a way which was impossible 10 years ago, when my father was having his treatment for lung cancer,” says 58-year-old David, who lives in South Yorkshire.

Nowadays David is very much part of the medical world, travelling across the UK, and occasionally the globe, championing the cause of patients treated for cancer and the quest to find a cure. He was chair of the NCRI Consumer Liaison Group for four years until 2012, and is chair of a consumer research panel in the North Trent Cancer Research Network. The patients and carers he works with, all contribute to health research to ensure that any research is focussed on outcomes which are important to patients and their families. The panel in Sheffield held a conference in 2012 which invited members of the public to listen to radiotherapy researchers from Sheffield, Newcastle, London and Manchester speaking about their work in the field.

In 2011, as part of the Year of Radiotherapy, David wrote an article for The Times about the benefits of modern radiotherapy and the work of Action Radiotherapy.

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Prostate Cancer

11 July 2013

michael-parkinsonThis week the veteran broadcaster, Sir Michael Parkinson, revealed he is receiving radiotherapy treatment for prostate cancer. Action Radiotherapy’s Professor Malcolm Mason explains more about the disease and how radiotherapy can be used very effectively to treat it.

On average, around 40,000 men will be diagnosed with prostate cancer each year in the UK and it is now the most commonly diagnosed cancer in men.

There are a number of factors that will influence the treatment, including whether the disease is detected at an early stage and how aggressive the prostate cancer is considered to be. Prostate cancer can be slow-growing in many cases and will not pose an immediate threat to health. In such cases, the specialist may advise what is referred to as ‘active surveillance’, which means regular check-ups to monitor the cancer; treatment is given only if it appears that the cancer is growing at a rate which warrants it.

In cases where the cancer does need to be treated but has been found at an early stage (where it has not spread beyond the prostate to other parts of the body), radiotherapy can be a very effective option. Sometimes, a specialist may decide to perform surgery (sometimes followed by radiotherapy), or radiotherapy on its own may be considered sufficient.

There are two types of radiotherapy which can be used to treat prostate cancer. The more common type is External Beam Radiotherapy. This is the type of radiotherapy that Sir Michael Parkinson is currently undergoing. It is a highly targeted form of radiotherapy which is planned by a team of specialists. Computers are used to make a ‘treatment plan’, which gives precise instructions about where the radiotherapy beam should be positioned, and for how long. This ensures that the radiotherapy targets the tumour while avoiding the surrounding healthy tissue as much as possible. This helps to keep side-effects to a minimum. Sometimes, this sort of treatment is combined with hormone therapy, which can be given before, during, or after the radiotherapy.

Brachytherapy is the term for a type of ‘internal radiotherapy’. Brachytherapy involves placing tiny radioactive seeds directly into the prostate gland. Radiation from the seeds destroys the cancer cells in the prostate. Of course, as with any cancer treatment, radiotherapy can cause side effects, both short and long term. These will vary from person to person but common problems can include fatigue, bladder inflammation (meaning you may need to pass urine more frequently), diarrhoea, and erection problems. The severity of these problems will also vary from person to person and not everyone will experience all these side effects.

The good news is that radiotherapy can cure prostate cancer where the disease has not spread and survival rates have improved considerably over the last 30 years. The key to successful treatment of prostate cancer is early diagnosis. If you are experiencing any problems urinating (for example, needing to go to the toilet more frequently or having difficulty urinating), always pay a visit to your GP. It will usually be something else other than prostate cancer but it’s always better to be safe than sorry.

As Sir Michael has said to other men  “Get it checked out”!

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