We had a great turn out at the meeting and we were very pleased to welcome a few new faces along. Thank you so much to everyone who turned up – I know the traffic disruption stopped some of you from coming along, hopefully we will see you next time.
Anne opened the meeting by giving a brief welcome and update on the Questionnaires which were handed out in Stormont. This was basically that a lot of people didn’t know the NI Net Natter Group existed, for some it was the location due to where they live and for others it was the time of the meeting. It looks as though there are enough people across the province to justify setting up a sister group with Dungannon being the most favoured/suggested location….. we are currently working on this and hope that a few of the regulars at our Belfast meeting will come along to the 1st couple of meetings to get the group going. We will keep you updated on progress once we get a date sorted and definite location, the Ranfurly Centre would be the suggestion at the moment.
Another suggestion from the questionnaires was that the group members each give a brief introduction at the start of each meeting of who they are and why they are here….. so we did this and found it useful for the new people as well as everyone else it helped to put a name to a face.
Professor McCance then spoke to the group. Many of you will know who Professor McCance is but for those who don’t he is an Endocrinologist who works in the RVH. He is just one part of a multi-disciplinary team who look after people who have been diagnosed with Neuroendocrine Cancer.
He explained that each person’s diagnosis is different and individual to them and due to nature of NETS they do not follow a specific pathway and therefore can be difficult to manage. And while it is great for NET Patients to discuss their illness, symptoms etc and be there to support each other but please remember that what is right for one person may not necessarily be right for another person. This is why one person may be receiving a different form of treatment from the person sitting next to them.
He thanked everyone for their patience at the clinics which can be very busy and he also thanked Teresa for the excellent job she does both within the clinic and with working with our group and said how delighted he was that the group had formed and was growing.
He then spoke about how they hope to achieve Centre of Excellence accreditation and explained that some of the benefits of gaining this status will be:
-Doing things better, more efficiently
-Having an additional clinic (the current one is extremely busy and due to being on a Monday bank holidays impact on it)
-More effective and additional facilities and treatments available here in Belfast which will mean patients not having to travel across to the UK. One example was the Gallium 68 scan which is much quicker and more sensitive than the octreotide scan. It can show a much clearer image and can pick up much smaller areas of disease. Another example was PRRT Treatment …… both of these currently involve travel to London.
-More funding will be available which will mean more resources, staff, literature etc
– It will also attract Junior staff from other parts of the world to come here to train, then return to their home countries and spread influence from NI to their countries and vice versa.
All of this is being actively worked on at the moment but there is a lot of paperwork and red tape involved. They may need help from the group in achieving their goal and this may involve the group helping to lobby for access to these facilities and treatments here in Northern Ireland. But this must be done in a very structured and managed way to be effective.
He did ask if that if anyone does go across to England for treatment etc would you please ensure you get a hard copy of a record of that scans, treatments you had along with any follow up steps required when you get back home. The hospital in England will send a report but it can take some time for this to come through so for your own benefit and ensure there are no delays please remember to do this.
He encouraged the NET Patient Foundation to continue to work closely with the clinics and keep them informed of any upcoming events or issues that he and his colleagues may need to put input into. He also mentioned fundraising and that he would be happy to guide or assist is we would like some advice about this. He said that he was very keen that we all work together for the best of the NET Community here in NI and while they may not have all of the answers they are doing their very best for everyone.
Below are a few questions the group asked :
Q. Does the grade of the tumour dictate if you get referred for PRRT?
A. It all depends on the proliferation/turnover of the cells as sometimes chemo may be more effective.
Q.Is there a flow diagram for NET Tumours – Pathways for progression?
A There are flowcharts available on UKI NETS website www.ukinets.org but again due to the nature of NETS these can be very complicated and hard to dictate.
Q. Is it possible for a person’s primary and metastasis (secondary tumours) to have different rates of growth?
A. In his experience metastasis have a similar rate of turnover.
Q. Is it possible to create a more practical information leaflet / pack to give new patients?
A. It’s hard to do this as everyone’s case is different – however if anyone has any suggestions put them through to Teresa and we can see what we can do. It was then suggested getting a small group of Patients together work on this – preferably all with different conditions to get a broader spectrum of needs, bearing in mind that there is a fine balance between giving the right information at the right time as opposed to overloading someone with too much information on diagnosis.
The group thanked Professor McCance for his time and for answering our questions.
The group then said they all found the Stormont Event very useful and thanked the NET Patient Foundation for getting such good speakers to come along.
We also had a chat about getting a 2nd opinion – while the group acknowledge the expertise and experience of the medical profession here in NI you should also know that you are free to ask for a 2nd opinion. Your consultant won’t be offended and my in fact be the best person to advise you who to go to.
Teresa spoke about a charity called the Carcinoid Fund – it is a small but ongoing fund which drugs companies would sometimes donate money to. This can be used to fund new literature, or for audits and research services within the dept. It may also be accessible to us.
Stephen told the group that while he was in London getting his PRRT he was very happy to discover that there is much research still being done on NETs.
A Cheque for £1,000 donated to the NET Patient Foundation was received by Teresa, she passed this to me and I have posted this off to them. This was donated by the Progressive Building Society and the NPF was nominated by my sister in law for their charity this year! So a big thank you to them.
Karen attended a table quiz night held by a Theatre Company in Ballymena to have a chat about NETs and about our group. They have kindly decided to donate a 3rd of the charity money they raise this year to NETS.
We did have a few other things to talk to the group about but as we spent so much time chatting with Professor McCance and wanted everyone there to have time to chat we ended the meeting and can talk about these at our next meeting.
Ana has been in touch with the Cancer Centre and Action Cancer about Taster sessions with their therapists and we can update the group at the next meeting, Anne has made progress with Macmillan and has applied for a small grant to help with running costs of the group as well as set up the sister group. We also wanted to ask people if they would be willing to make a small donation of 50p at each meeting to put towards refreshments – we can discuss these next time.
Thanks for your time and hope I haven’t waffled too much!!
Take care and keep in touch …..don’t forget we have a closed, private facebook page called ‘NI NET Natter-ers’ send us a friend request!
Lesley