Annual NET Patient Day 2013

November 9th 2013 Kilkenny


The 2013 Annual NET Patient Day was a great success in the Springhill Court Hotel in Kilkenny on Saturday November 9th.

There was a fantastic attendance by NET patients, many accompanied by their family and friends, who travelled from all around the country to participate. We had a great mixture of newly diagnosed patients and long-term patients, with everyone contributing to make the day a major success.

The details for NET Patient Day 2014 will be announced on this website later in the year

As a relatively small group of patients with a rare disease, we benefit greatly from the dedication and commitment of our health carers. Our thanks go to the medical specialists from around Ireland who attended our event and who made themselves available for a very useful and informative question and answer session in the afternoon:

  • Prof Dermot O’Toole, National Lead for NETs – Ireland
  • Prof Per Hellman, Professor of Surgery, University Hospital, Uppsala, Sweden
  • Prof Donal O’Shea and Mr Justin Geoghegan from St Vincent’s University Hospital
  • Mr Criostóir O’Suilleabháin, Dr Derek Power and Dr Adrian O’Sullivan from Mercy University Hospital, Cork
  • Dr Greg Leonard from Galway University Hospital

We are indebted to Prof Per Hellmann, Professor of Surgery, University Hospital, Uppsala, Sweden who travelled to Ireland especially for our day. Prof Hellman has treated many patients from Ireland through the Treatment Abroad Scheme from the HSE and he has been a strong supporter of setting up systems for NET treatments in Ireland. Prof Hellman gave a wonderful presentation in the morning session on the benefits of surgery for NETs treatment. Prof Hellman also sat on the panel for our Q&A session in the afternoon. A video recording of Prof Hellman’s presentation can be viewed here:

Mr Bill Claxton, Co-founder of the Carcinoid & Neuroendocrine Tumor Society (Singapore) has given great support to our fledgling NET patient support group and prepared a special presentation for our national patient day in Kilkenny. Mr Claxton, who is himself a patient and a very active and enthusiastic supporter of patients taking control of their treatments, planned to make his presentation remotely from Singapore via the internet. Unfortunately, technical problems prevented us from seeing Bill’s presentation through to completion but Bill went further and made a special recording of his presentation that we could distribute here:

The afternoon session was opened by Prof Dermot O’Toole, who was appointed the National Lead for NETs Ireland in June 2013. Prof O’Toole is fully supportive of a strong NET patient support group through NET Patient Network, and he is committed to establishing national systems for NET treatments that are effective and thorough. Prof O’Toole’s presentation can be viewed here:

Ms Catherine Donohue of the HSE was very gracious to answer questions and concerns of NET patients about recent reports of changes in how the Treatment Abroad Scheme is implemented and of perceived restrictions imposed. Ms Donohue took many questions from the floor and allayed everyone’s fears over access to the Treatment Abroad Scheme. We are very thankful to Ms Donohue for her very refreshing contribution to our patient day and for her and the HSE’s continued support for NET patients in Ireland.

The event concluded with an excellent Question & Answer session. We have recorded the Q&A and are happy to make the answers provided by the panel available here. For privacy we have not included video of the question being posed.

Q1 Are we likely to have Lutetium treatment in Ireland anytime soon? Will Irish patients be referred abroad for Lutetium if such treatment is suitable?

Q2 My father is being treated for a high-grade NET in a general hospital without NET specialist care, should he be referred to a specialist centre, e.g. St Vincent’s University Hospital?

Q3 If a person is diagnosed with breast cancer with NET properties, how effective is standard cancer treatments vs NET treatments?

Q4 Should international NET experts, such as Prof Per Hellman, be included in the Irish Centre of Excellence for NETs?

Q5 What is the necessity for octreotide infusions prior to minor surgeries if the patient suffers from Carcinoid Syndrome?

Q6 Should patients with Carcinoid Syndrome carry an “at risk” identifier?

Q7 I had heavy bleeding from a prostate biopsy, could this be because I was due to have my monthly sandostatin injection the following day?

Q8 Can a slow-growing NET cancer change to become more aggressive?

Q9 Can a NET tumour which is undetectable through either scans or bio-chemical markers cause Carcinoid Syndrome?

Q10 Is there any diet that can help to treat NETs or restrict NET proliferation?

Q11 What impact does NET treatments have for patients with heart problems?

Q12 What future treatments are coming down the line, such as the oncolytic virus?

Q13 Is there any connection between thyroid cancer and NETs?

Q14 What improvements can we expect to see with the treatment of NET patients in Ireland?

Q15 How effective is lanreotide in treating NETs and does longterm use lead to diabetes and insulin dependency?

Q16 What are the problems with weight maintenance due to NETs?

Q17 Does somatostatin cause raised sugar and glucose levels?

Many thanks to our sponsors Novartis, Ipsen and Pfizer who made this event possible.

See the previous Annual NET Patient Day 2012 here

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