European Neuroendocrine Tumour (ENETS) Conference Paris 2007
The first thing that struck me about the ENETS meeting was the amount of people attending. I was speaking to the organisers of the event who said it was without doubt the biggest attendance that ENETS have ever had.
That meant that there were 900 delegates from around Europe all together in a large room presenting evidence, case histories and trying to come to some consensus in the management of this complicated disease. This ultimately is hoped to improve the quality of life and extended survival for you all and those for years to come. Of course the fact that there was such interest is so encouraging for the future and indeed for any patient in the year 2008.
One of the first things that I received was a publication called Neuroendocrinology. This was a special edition that contained 59 pages of guidelines for the management of NETs. There are published guidelines for the UK which can be found on the site, but the European Neuroendocrine Tumour society which is a leading force in the field have been working on developing standards of care for NET patients. This can work alongside the guidelines for the medical management of NETS. Eleven manuscripts have been written covering different aspects of care from blood tests, surgery, endoscopy, scans to follow up guidelines and documentation. This is an exciting document and all pushes towards the ultimate need for doctors/nurses to be singing from the same hymn sheet! Once this has been published which should be around April then we will get a breakdown on the site for you all to have a look at if you are interested.
The following 2 days were spent in lectures sharing the most current and relevant NET research being conducted around the world. Also experience was shared not only amongst the medical delegates but also the nursing delegates.
It was really interesting to meet nurses from the Netherlands and from Denmark. It was also quite comforting to find out that they seem to have the same problems with everyday formalities as we do in the UK. However the funding issues for drugs and treatments are not apparent, which was very enviable. A number of the UK nurses were present so that was an opportunity for a catch up!
The work that we have done at the Foundation with the information booklets was well accepted and hopefully the distribution of these will help raise the profile of NETs and the charity.
I think another very interesting bit of information that was available at the conference was the history of NETS. This spanned from 1907 when a doctor called Siegfried Oberndorfer from Munich described the first carcinoid in the small bowel, moving onto Thulin describing the use of somatostatin controlling carcinoid flushing in 1978 and then Wood reporting on the successful use of somatostatin analogues (octreotide and lanreotide) in carcinoid disease in 1985, then the first trials in radio targeted therapy in 1992. Then in 2000 the World Health Organisation classified NETs (or Gastroenteropancreatic Neuroendocrine Tumours).
We are obviously making great advances in this disease but due to lack of patient numbers and research based evidence we still have a long way to go. BUT we are going in the right direction and that should be comforting for patients, especially with the development of NET centres and specialist multidisciplinary teams that work together to ensure the best possible patient care.
But in the words of Maimonides:
‘……Further, there are things of which the mind understands one part, but remains ignorant of the other; and when man is able to comprehend certain things, it does not follow that he must be able to comprehend everything.’
However I can assure you that the medical profession really is trying to comprehend everything about NETs.
Catherine Bouvier
