CANCER SURVIVORSHIPS

Europa Donna

I always thought a Symposium was a boring event

           But Europa Donna (ED) proved me wrong,

ED is a group of very eminent oncologists from across Europe, who kindly not only allow patients to be members, but actually listen to what we have to say, and treats us as equals.

 As they say, the original vision came from Professor Veronesi, who set up ED with women, with the idea that women should run the organisation, women with breast cancer and women interested in breast cancer, for whatever reason. This includes women doctors working in the field of breast cancer, some of whom have also had breast cancer.  In ED all have an equal voice and an equal say, although the professionals among the membership can bring  advice, technical info and up-to-date research findings for all to share.
 
Every year, their annual UK get-together comes up with a cracking event, and this year it fielded two of the most interesting figures in the UK cancer world, Dr. Jane Maher and Prof. Dame Lesley Fallowfield.  Both had lots to say, and managed to keep their audience entertained and interested.

The Symposium was held at the Medical Society of London, one of those lovely old buildings with a sweeping staircase which make you feel you want to be back in the 19th century!  This is all thanks to Dr. Margaret Spittle, who is the Chairman of ED.

Professor Jane Maher, Chief Medical Officer, NHS Clinical Leader and Consultant Clinical Oncologist at Macmillan Cancer Support

Jane Maher works at Mount Vernon hospital, and is also Joint Chief Medical Officer at Macmillan.  I have been a fan ever since she published “Cured – but at What Cost?” which finally highlighted the problems many survivors face with long-term side effects from cancer drugs.  This time she was talking about the uncertainty we face, especially when we don’t get the right information and/or treatment,

However, then came the crunch;  I had always wondered why “Cured …” hadn’t included suggestions as to how cancer survivors could get treatment – the answer came when she admitted “Macmillan works in partnership with the NHS”, so if the NHS doesn’t provide what we need, and frequently it doesn’t, it seems Macmillan isn’t able to lobby for this.

In her presentation up came my bête noir, NCSI (National Cancer Survivorship Initiative), which works well for survivors with no long term problems;  but those of us who do have issues, find its Holistic Needs Assessment incredibly patronising.  But that wasn’t Jane’s fault, and she went on to say that the medical profession must realise that cancer recovery programmes must take into account co-morbidities; 1 in 4 of us will have to deal with the consequences of treatment; summaries need to suggest what should happen to us.

For those who develop metastatic cancers she said there needs to be a register, and everyone needs to crack the problem of how to work together more effectively.  Then up came a lovely extract from a Twitter campaign showing how GPs and Surgeons were being encouraged to ‘hug a GP/Surgeon’ – everyone laughed and looked at their neighbour!

Lesley Fallowfield web

Then Prof. Dame Lesley Fallowfield skipped up to the lectern, looking most Un-dame like.  ED deals mainly with Breast Cancer, and she had been involved with this specialty ever since 1984, when she had worked with Prof. Michael Baum. She then endeared herself to this survivor, saying “unfortunately acute and long-term side effects are under-recognised and under-reported”.

We then had a fascinating lesson in explaining risk as she went on to talk about the science (or lack of) with clinical trials.  Starting with “many patients are bombarded by literature which bemuses”;  how true, and always at the wrong time.  As people don’t always behave rationally, giving risk information doesn’t always result in rational decision making – and anyway, “facts are always changing in medicine”, which drew a laugh from the audience.

Then came facts to underline what she was saying:  16% of us have a reading age of a 10 year old but 25% of us have the maths skills of that same 10 year old.  Hence the reason why people can find difficulties with understanding percentages.  Underlying this she played some games with percentages that got me totally confused – so I could understand why anxious patients undergoing treatment can’t grasp what’s what.

This was a very amusing talk discussing a serious topic, defining people’s expectations, and how decisions could be influenced by the personality of the patient, and/or that of the doctor.  So when deciding a course of action you should take into account the personality of the person talking through a course of action.  On reflection, I was able to highlight instances during my treatment where this had applied.

Professor Dame Lesley Fallowfield has been awarded a prestigious Breast Cancer Research Foundation (BCRF) grant of $250,000 annually. The BCRF is the highest rated breast cancer organisation in the US and eminent researchers are invited to apply for funding. Dame Lesley proposed two distinct projects.

One is to produce a communication-skills DVD/workshop for clinicians discussing genomic test results with breast cancer patients; the other working with Dr Melanie Flint at Brighton University and UK breast oncologists, will examine the psycho-neuroimmunological and biological factors underpinning personalised supportive interventions for women with breast cancer.

Membership

Why not become a member?  If you enjoy listening to eminent specialists giving up-to-date info (in a way we can understand), then anyone who is a patient recovering from Breast Cancer, or who has an interest in the subject, can join.  The fee is ONLY £10 a year.

UK office for membership contact:  edukforum@gmail.com

Headquarters’ website:  http://www.europadonna.org/

 

 

 

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