It cannot be beyond NHS trusts to keep data on incurable breast cancer

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Breast Cancer Awareness Month

Another Breast Cancer Awareness Month starts and 2017 marks 25 years of the pink ribbon.  The usual arguments erupt for and against the tide of pink – used on everything from T-shirts to cocktails – to raise money for breast cancer research and care.  It is not the colour about which there is disagreement, but the perceived view of those whose breast cancer has metastasised, that the focus is too much on prevention and early detection. They feel isolated and abandoned.

About | Breast cancer

Signs and symptoms of breast cancer:

  • A change in size or shape of the breast
  • A lump or thickening that feels different from the rest of the breast tissue
  • Redness or a rash on the skin and/or around the nipple
  • A change in skin texture such as puckering or dimpling
  • Discharge (liquid) that comes from the nipple without squeezing
  • Nipple becoming inverted or changing its position or shape
  • A swelling in the armpit or around the collarbone
  • Constant pain in the breast or armpit

What to do if you find a change:

  • Most changes are likely to be normal or due to a benign (not cancer) breast condition
  • If you notice a change, visit a GP as soon as possible
  • A GP may feel there is no need for further investigation or may refer you to a breast clinic
  • If you do not feel comfortable with a male GP, ask if there is a female GP available

Source: Breast Cancer Care

For these women and men, the cheery, upbeat fun of the month with its carnival atmosphere – however well-meant by those participating and raising the funds – highlights the huge difference between a primary diagnosis and the life-changing realisation that the cancer has spread. Breast cancer can find its way into the bones, brain, lungs or liver.  It is possible to treat the cancer – sometimes for a number of years – but it is not curable.  Every year 11,400 people die from breast cancer in the UK.

My thoughts always turn to my oldest and dearest friend, Jessica, who was diagnosed with this hideous disease in her late forties – and died before her 50th birthday

It is estimated by Breast Cancer Care (BCC) that there are around 36,000 people in the UK living with the disease, but the data is incomplete – largely because, despite requests by BCC, NHS trusts in England keep no data on how many patients have incurable breast cancer.  Surely it cannot be beyond the trusts to comply with this request.

BCC has worked with people living with secondary breast cancer and healthcare professionals to identify the highest standards of care that should be offered and should, rightfully, be expected.  These standards fall into three categories – information and support; treatment and care; and palliative and supportive care.

Shockingly, over half of the NHS Trusts and Health Boards surveyed by BCC do not provide specialist nursing care – which adds to the reasons that people with secondary breast cancer feel isolated.  BCC’s campaign – ‘Secondary.  Not Second Rate’ –  is still working to ensure that people with secondary breast cancer find the care and support that they deserve.

All too often, doctors and nurses lack the time to answer the myriad of questions that a secondary diagnosis throws up – not just prognosis, but how the practicalities of life will be affected.  BCC runs special monthly sessions ‘Living with Secondary Breast Cancer’ – facilitated by a counsellor – which enable people to exchange views and support, plus hearing from relevant experts like a Clinical Nurse Specialist or a benefits advisor.  For events in your area click here.

One charity is dedicated entirely to prevention, diagnosis and causes of secondary breast cancer.  Secondary 1st was founded in memory of Rosie Choueka, whose triple negative breast cancer was diagnosed in 2014.  Rosie gave her cancer the name of ‘Genghis’ because it was “aggressive, moves fast and wants to take over”.  Very sadly for Rosie, her husband Elliott, their two young children, family and friends, ‘Genghis’ did just that and Rosie died in June 2015 aged 38.

Cancer | Five red flags to never ignore

  1. Any sudden weight loss when not dieting.
  2. Blood in your faeces or urine.
  3. Coughing up blood.
  4. A lump in the breast, groin, testes, side of the neck or armpit.
  5.  Severe, unexplained pains or aches.


    Rosie followed in the footsteps of Ellie Jeffery – whose breast cancer overwhelmed her when she was only 29. Both women died far too young and both wrote a blog about their cancer journeys. Ellie’s was called Written Off and Rosie’s Fighting Ghengis. The blogs are still on the internet and make inspirational reading. Ellie’s fiancé, Tom Throstrup, launched The Eleanor Rose Foundation – Ellie’s Friends – which offers products and services at low or no cost to those living with cancer. Both charities, founded in memory of remarkable women, are doing vital work – the like of which is always left to the third sector.

    Medicine has moved on in the last 19 years and women have become more empowered to question the doctors

    This month of the year will be full of memories for so many people who have lost family members or friends to breast cancer.  My thoughts always turn to my oldest and dearest friend, Jessica, who was diagnosed with this hideous disease in her late forties – and died before her 50th birthday.  Neither of us knew anything much about breast cancer then – its types, treatments or side effects. Were enough questions asked?  Definitely not. Could more have been done to save her? Absolutely – but only with hindsight.

    Why did no one recognise the seriousness of the bronchial pneumonia, caused by the chemotherapy? A different doctor was on duty that evening and prescribed only oral antibiotics. She went home and slipped away the following morning. Medicine has moved on in the last 19 years and women have become more empowered to question the doctors. When my own diagnosis came ten years later, I placed myself totally in the hands of my surgeon – as Jessica had done with her doctor – but, having learned so much since from writing about the disease, I wonder if I would be quite so compliant now.

    Whether you decide to wear pink or not, please support Secondary Breast Cancer Awareness Day on 13th October. BCC has a week of Live Chats, each on a specific element of living with secondary breast cancer. Register here to join, or email with any questions.

    And please note: if you do buy a pink item, check that a decent-sized percentage of the selling price does actually go to the charity designated. Beware of “Pinkwashing“, in which companies use pink branding for commercial gain.

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