In celebration of the 70th anniversary of the NHS we are posting a series of blogs from patients who have had radiotherapy to share their experiences. First up is one from Judith Potts.
I am writing this blog post partly as a breast cancer patient and partly as a Trustee of Action Radiotherapy.
This year marks ten years since my breast cancer diagnosis. Whilst I am not celebrating – breast cancer has a nasty habit of returning when least expected – I do feel incredibly lucky to be still here. Cancer has taken the lives of too many people close to me – not least my oldest and dearest friend, Jessica, who I met when we were 8 and at school together. Her diagnosis of breast cancer came when she was 49 but she never reached the radiotherapy stage of treatment because, having contracted undetected bronchial pneumonia, she died during chemotherapy.
Ten years later, I found myself with the same diagnosis. Thanks to my wonderful consultant – the now-retired Professor Dudley Sinnett – my cancer was spotted very early. Indeed, it was only because he gave me a clinical examination following a mammogram and scan, both of which had been read as clear, that he noticed a puckering of the skin which he thought was suspicious – and he was absolutely correct.
Identifying the cancer at this early stage meant that I did not have to undergo chemotherapy. Surgery – a lumpectomy or wide-local excision – followed by six weeks of radiotherapy, ending with daily Tamoxifen was the treatment suggested and I was introduced to my oncologist, Dr Charles Lowdell, now a Friend of Action Radiotherapy. He explained what would happen and read to me the long list of possible side-effects of the treatment – none of which I heard because I was still reeling from the diagnosis and surgery. Anyway – come what may - I had already embraced whatever treatment would rid me of invading cancer cells still lingering in my body.
Foolishly, I went for my first treatment alone and still remember how close to tears I became as I waited for my turn. The mixture of emotions – fear, shock and the loneliness of a cancer diagnosis with all its implications – almost overwhelmed me, but I was saved by the team of incredibly kind and caring radiographers.
When I finished my six weeks of treatment, I was asked to write a leaflet from the patient’s point of view, which could be handed out before someone’s first visit to the radiotherapy unit and would de-mystify the upcoming treatment. This I did – and my first piece of advice was not to attend the first day of radiotherapy alone and always try to have someone with you at hospital appointments to make notes and be your ears when shock or cancer fog has taken over.
Ten years on, women and men who undergo radiotherapy are considerably better prepared. The cancer charities have done – and are doing – a great job is raising awareness of the disease, treatments and aftercare. Action Radiotherapy was launched eight years ago by Professor Pat Price to provide all the information a patient needs about the different types of radiotherapy; to lobby for this very effective treatment to receive more government funding; to ensure that every patient has access to the best radiotherapy for their particular cancer – and not be treated as ‘one size fits all’; and to provide support, information and interaction for professionals. The newly-created All Party Parliamentary Group on Radiotherapy – chaired by Tim Farron MP – gives a real voice to everyone in the radiotherapy community, be they patients or doctors.
This year the NHS is 70 years old and, through a series of television and radio programmes, it has been possible to see the huge strides made in medical science since its birth. The NHS finds itself much-maligned – and, often, entirely correctly – but this is through no fault of the doctors, nurses, researchers and other healthcare professionals who work within its hospitals and clinics.
Radiotherapy is a different experience now, with more modern and sophisticated machines and less time spent below ground. Following two major trials conducted by the NHS to ascertain if it was possible to give less and better targeted radiotherapy - thereby protecting neighbouring organs and healthy cells - six weeks of radiotherapy for breast cancer is now not always needed. The START and IMPORT trials, conducted by many of the UK hospitals, proved the point and current treatment is down to fifteen fractions – once a day for three weeks, with partial radiotherapy used for low risk patients.
If it is the left breast which contains the cancer – (or there is a lymphoma in the chest region or other tumours of the chest or upper abdomen) - there is a risk that the heart might be clipped by radiotherapy and damaged. However, a technique called Deep Inspiration Breath Hold has solved this problem. The Technique requires the patient to take in a deep breath before the radiation is delivered and hold it while treatment occurs. By doing this, the lungs fill with air and the heart is naturally moved out of the way. The hospitals where this Technique is used are on Action Radiotherapy’s webpage.
In 2010 I was invited to write a Column for The Telegraph. One of my first pieces was about the need for more radiotherapy centres so that women and men, who live in remote areas, do not have to choose between travelling hundreds of miles a day for radiotherapy or having a mastectomy. Sadly, in 2018, many patients still have the same dilemma and some smaller radiotherapy centres are under threat of closure. By creating fewer centres, the NHS is not ‘putting patients first’, it is doing just the opposite.
There is only one pot of money - all of which comes from us, the taxpayers and should be spent on us. NHS Trusts must ensure that their radiotherapy machines are up-to-date and enough physicists and radiographers are trained. Radiotherapy is not only a very effective treatment – to which I bear testament – but it is relatively inexpensive, particularly as for some areas of the body the fractions required are now fewer. This should be a huge incentive to the NHS to adopt the new techniques which are being developed constantly both here and in other parts of the world. Ironically, although the UK is involved in developing these new techniques, they are – as yet – not able to be used everywhere in the NHS.
A good proportion of the £20 billion birthday money promised to the NHS must be invested in this remarkable treatment which not only saves lives but has the potential to be cost-effective in every sense.
The All Party Parliamentary Group on Radiotherapy has just launched its manifesto calling for a big slice of the NHS’ birthday money. There will be a petition in support of this document soon which I will be sure to sign.
There are lots of great ways you can help Action Radiotherapy. How about signing up to be a patient advocate or writing to your MP asking them to get involved in the APPG for Radiotherapy? Or simply by signing up to hear more about the work Action Radiotherapy does or how about making a donation to help them continue their great work?
We are looking to create a community of patient advocates. Please contact us with your story to get involved.