Since my foray with cancer I have done exactly what many of you would have expected me to… try to really understand more about Phyllodes, to ensure that there is some education on the part of the medics and the NHS, an acknowledgement that although rare, we do exist and also (really unsurprising bit) to put myself forward for posts whereby my voice can be heard and, I hope, make a difference for anyone else entering the world of cancer.

Through the South West London Cancer Network Partnership I was invited to attend the National Rare Cancer Conference today.  It doesn’t cease to amaze me that I learn yet more at each event I attend and sadly that I sat amongst people who had been diagnosed with equally rare cancers and the frustrations that this lack of knowledge leads to for a patient.

Some quick facts that I learnt:

In 2007 in the UK approximately 300,000 people were diagnosed with cancer.
In 2007 in the UK approximately 140,000 people were diagnosed with a rare cancer.

Approximately 50 in every 100,000 people are living with a rare cancer in the UK.

Sir Mike Richards (National Director, National Cancer Action Team) was speaking at the event and asked us to consider a few questions:

1/  What is a rare cancer?
2/  What are the outcomes for patients with rarer cancers?
3/  What would you want to see in a Cancer Reform Strategy ‘refresh’?

Ray Murphy (National Cancer Partnership Forum) used this phrase, which I just love and struck a huge great big bell for me… “Add years to life and where we can’t, we should add life to years”.

We also heard from Andrew Wilson, Chief Executive of the Rarer Cancers Foundation and from Simon Davies, Executive Director of Cancer52 (so called because 52% of the UK cancer deaths are from the less common cancers).

We discussed how we could increase awareness to some of the rarer cancers, perhaps therefore ensure that people are referred tested and diagnosed earlier. We discussed an equality of care and how this can be improved. We talked about where we felt tests, diagnosis, treatment and post treatment areas can be improved. The most distinct area that we felt needed improving was communication and sharing of information between medical groups and also with the patient. An informed patient is, mostly, a happier patient and an empowered patient.

We were also told of a wonderful new resource available to doctors and patients. Information pathways for differing cancers.  The information is constantly being reviewed and updated however there is already a great deal of information available at  NCAT Pathways.  You can look and download pertinent information and locate resources and support in your area. I suggest that if you come across a great service in your area you urge them to contact National Cancer Action Trust to be listed. All good resources deserves referral!

Personally I discovered there are many many rare cancers and then there are rarer cancers. It struck me just how rare phyllodes is and how those diagnosed are simply rarer than rare! However no matter how rare a cancer is, there should be a resource, specialist or information available. I’m on it!

Everyone I spoke to about Phyllodes and my experience was shocked that I hadn’t been referred to a sarcoma specialist.. apparently this should be done with any sarcoma diagnosis in order to obtain the best possible care and follow up…. and of course raise awareness that there’s yet another case of Phyllodes out there!

Paula Lloyd, Associate Director of the National Cancer Action Team spoke very well in summary of our discussion feedback but also provided us with an update on progress within the NHS and the Govt for understanding and improvements for those diagnosed with rare or rarer cancers.

My summary of the event was that there were most definately frustrations amongst people diagnosed with different rare cancers.  Lack of information, resources and support is paramount.  In addition, the lack of ‘joined up writing’ between the medical arms involved – why shouldn’t anyone involved in patient care have access to the information via technology?  It’s insane that letters are typed, put in envelopes, stamped and posted to our GPs and that nurses and cancer care specialists don’t have the information at all.  This means that everytime a patient meets someone new they have to repeat their story which can be emotional, tiring and perhaps misleading as the patient may not verbalise important facts that perhaps they hadn’t understood or were too much like medical speak.

However all that said, the people attending the conference are amongst the strongest, most inspirational and amazing people.  Mostly they don’t have an axe to grind or a whinge to air but simply want to make it all better for anyone else.  They have and do live with the most unusual symptoms and pains to live with but the loudest sounds in the room were from laughter and looking around smiles.  Amazing.

I was so bushed by the end of the day that I headed off home (using 3 different buses) and it wasn’t until I reached my front door that I remembered I was meeting friends for drinks… quick change and out again!