What needs to be done for rare and less common cancers? Join our Do you C us campaign!

Rare and less common cancers account for nearly half of new cancer diagnoses

They affect people of all ages, genders, ethnicities and locations. However, the nature of these conditions means that people can often face a range of issues, such as recognising symptoms, obtaining a diagnosis, receiving the most suitable treatment or getting appropriate levels of support.

‘Do You C Us?’ aims to unite PfizerCancer52 and its member charities to raise awareness of the challenges facing people living with rare and less common cancers and highlight the need for change to address these.

Kes' Story: Watch the video

"I first had strange blood test results in my early twenties back in the 1980s but it wasn’t until many years later that my GP started to investigate my continuing strange results. It took them two years of prodding and poking me before they diagnosed my condition. MDS, a form of blood cancer, is usually a condition older men get and so at first they thought there was something wrong with my pituitary gland and I was given a brain scan. Finally, in 2000, I was sent to Kings, a centre of excellence, and they confirmed I had MDS.

I was put on ‘watch and wait’ where the doctors monitored my condition rather than taking any action at that point. It is a horrible term because it’s like you are waiting for something to happen. It’s like the sword of Damocles hanging over your head and it can fall at any time. Active monitoring is a much more positive way of putting it."

"Unfortunately, my condition progressed and I have suffered several bouts of sepsis, infection and flu. When all this started, I was a young fit football player. I never walked anywhere, instead I used to run. I rode a big motorbike. I worked full time, sang in a choir, volunteered with St John Ambulance, was a Venture Scout Leader as well as playing and training hard with my football. I played for Millwall Lionesses and went on to play for Charlton Ladies. After all these years of cancer being my constant companion, I now live a very different life.

In October 2016, I had a stem cell transplant. My little sister was my donor. I am a priest in the Church of England, but I haven’t been able to work since the transplant and am living with many ongoing consequences of my treatment and cancer, including needing to use a walking stick, mobility scooter and hearing aids.

I count my blessings that I am still breathing. I am thankful to have seen my daughter and grandchildren grow up. I take things on the chin and get on with it. And I try to help and support others with the condition. I’m not just the sum of my blood results."

What are we asking from government and MPs?

What needs to be done for rare and less common cancers?

  1. In the NHS Long Term Plan, the NHS committed to diagnosing 75% of all cancers at stage 1 or 2 by 2028. In order to meet this target, improvements are required across all cancers – including rare and less common cancers.
  2. Work should be undertaken to identify people 'missing' from the system, including people with rare and less common cancers. People must be reassured that it is safe to come forward for treatment.
  3. Cancer must remain a Government priority. Cancer services and the cancer workforce, including those for people with rare and less common cancers, should receive sufficient investment and funding for the future. This must be set out in the next Comprehensive Spending Review.

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