Cork NET Services

St Vincents NET Centre of Excellence

About NET Patient Network

Welcome to the Net club

One of our NET Patients has compiled a great resource to help newly diagnosed NET patients with practical tips and advice, drawn from their own personal experiences.

You can download the PDF document by clicking here.

National NET Patient Day

Virtual Event

November 13th, 2021

This is an information day for Irish NET patients. For safety reasons we have decided to again hold this year’s patient day as a virtual event. The event will be very informative and helpful for both new and existing NET patients.

Because this is a virtual event, you need to register to attend and you will receive a link to click on to attend the event, via email, AFTER you register.

NOTE: You will be asked if you are a HCP, (Health Care Professional), please select No, as this is for the Speakers.

Here is the link to register:

https://us02web.zoom.us/webinar/register/WN_X0FFeE4FTBGHlX9ls-Gm9Q

The event will be held using Zoom (which hopefully many of you are used to after the last 20 months!) but you will not be visible to anyone.

Just the host and presenters will be visible on screen. You will be able to connect on a computer, tablet or smartphone but we suggest using a computer if possible to easier read any slides being presented.

The event will finish with a Question & Answer session as always.

This is a wonderful opportunity to ask any questions you may have about your disease, your treatments, your symptoms or any aspect of your care.

All of the NET clinicians in Ireland are making themselves available for this Q&A. To help ensure your question is asked on the day, we ask you to submit it in advance by email to [email protected]

Timetable for the Day

10.00 – 10.05 Welcome and introduction (Mark McDonnell, Chair NPN)

10:05 – 10:15 NET Overview and PRRT in Ireland Update

Prof Dermot O’Toole, National Lead for NETs, NET CoE, SVUH

10:15 – 10:25 Southern Region Update

Dr Derek Power, Mr Críostóir Ó Suilleabháin

Cork University Hospital / Mercy University Hospital)

10:25 – 10:30 Irish PRRT Results

Dr Hussein Almeamar, NET CoE, SVUH

10:30 – 10:35 Improvements and Procedures in Scans and Diagnostics

Dr Stephen Skehan, Head of Radiology, SVUH

10:35 – 10:40 Chemotherapy and NETs

Dr Mark Doherty, NET CoE, SVUH

10:40 – 10:45 Research in Irish NET Group

Dr Rachel Crowley, NET CoE, SVUH

10:45 – 10:55 A Patient Journey

Mr Tom O’Donohue, NET Patient, Tipperary

11:05 – 13:00 Q&A Panel with NET Specialists

Q&A Panel:

St Vincent’s University Hospital

Prof Dermot O’Toole, Prof Donal O’Shea, Dr Hussein Almeamar,

Dr Rachel Crowley, Dr Mark Doherty, Dr Stephen Skehan,

Mr. Justin Geoghegan, Ms Lisa Cullen

Cork University Hospital

Mr. Cristóir O’Suilleabháin, Dr Derek Power

Galway University Hospital

Dr Gregory Leonard, Dr Marcia Bell

Don’t forget to submit your questions in advance to [email protected]

Survey to Help Raise Awareness for

NET Patient Day and World NET Cancer Day

(Takes less than 1 minute to complete)

The NET Patient Network are delighted to welcome an initiative by Ipsen to help raise awareness of NETs, specifically in Ireland, in advance of our National NET Patient Day (November 13th) and the corresponding World NET Cancer Day (November 10th).

Ipsen is looking for people living with neuroendocrine tumours (NETs) in Ireland to take part in a very short anonymous survey about NET diagnosis, care, and challenges.

The survey has been developed to better understand current awareness of NETs, and your experience of living with the condition. Ipsen aim to publish key findings from the survey in the Irish media in order to increase awareness ahead of World NET Cancer Day on November 10th and the National NET Patient Day on November 13th.

To be eligible to take part in the survey, you need to be an adult (aged 18+) diagnosed with a NET and living in Ireland.

The survey link is https://www.surveymonkey.com/r/B3TZG76 – this should take no longer than 5 minutes to complete. The survey is open until November 1st.

The NET Patient Network ask as many patients as possible to complete the short survey as the more respondents will help to make the findings more powerful in any published articles.

Many thanks in advance – your participation is greatly appreciated!

ENETS-INCA NET Cancer Day Educational Webinar

We are delighted to invite you to the ENETS-INCA NET Cancer Day Educational Webinar on Wednesday, 10 November 2021.

This webinar addresses explicitly the patients’ view.

It will be interactive with interesting examples, live polling, panel discussions, and audience participation via a Q+A tool!

Joining instructions

Date: Wednesday, 10 November 2021

Time: 12:00 – 14:15 Central European Time (CET) 11 AM to 1:15 PM Irish Time

Where: https://www.enets.org/net-cancer-awareness-day.html

This ENETS webinar is free of charge and no registration is necessary.

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NOTE: We have edited the times below to reflect Irish Time, however the webinar is being held using Central European Time (CET), which is one hour ahead of Irish Time & CET times will be mentioned during the webinar, NOT Irish Time.

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Agenda

11:00 – 11::10 | OPENING

Catherine BOUVIER (INCA President, GBR) and Marianne PAVEL (ENETS Chair, GER)

11:10 – 11:40 | PART ONE |

The Facts: Incidence and Prevalence of NENs globally

Gregory KALTSAS (Endocrinologist, GRE) and Staffan WELIN (Endocrine Oncologist, SWE)

11:10 – 11:20 Talk
11:20 – 11:40 Q+A session

12:40 – 13:10 | PART TWO |

Patient reported treatment side effects: What causes the side effects in NEN treatments and strategies for side effect management

Angela LAMARCA (Oncologist, GBR) and Simona GLASBERG (Endocrinologist, ISR)

11:40 – 11:50 Talk
11:50 – 12:10 Q+A session

12:10 – 12:40 | PART THREE |

Patients as partners in NEN Research: Key focal points of research from genomics to organoids. What is it all telling us, and are patient views being truly considered?

● Where are we now, what do we know, and what do we need to further investigate?

● Role of patients in research

Enrique GRANDE (Oncologist, ESP) and Anja RINKE (Gastroenterologist, GER)

12:10 – 12:20 Talk
12:20 – 12:40 Q+A session

12:40 – 13:10 | PART FOUR |

Nutrition in NENs

● Patient case history given by the patient around issues with diet and nutrition. A dietician, doctor and nurse offering solutions to these issues:

Wanda GEILVOET (Nurse, NED), Dietitian (tbd), and Elisabeth NIEVEEN VAN DIJKUM (Surgeon, NED)

12:40 – 12:50 Talk

12:50 – 13:10 Q+A session

13:10 – 13:15 | CLOSING

Catherine BOUVIER (INCA President, GBR) and Marianne PAVEL (ENETS Chair, GER)

We look forward to “seeing” you online.

Best regards,

Catherine Bouvier (INCA President) and Marianne Pavel (ENETS Chair)

NET Patient Information Videos

NET Patient Network is delighted to announce a major information initiative.

Three new videos featuring experts in NETs care and patients with first-hand experience of living with the condition have now been uploaded to our YouTube Channel.

The First video tells the story of the National Centre of Excellence at Saint Vincent’s University Hospital, Dublin.

The second video explains how the support group attempts to help NET Patients and their families.

A Cork-based NETs patient presents the third video. It explains the range of services available to patients cared for by the Mercy University Hospital.

You can get more information about the videos & links to all three videos by clicking here.

NET Patient Network Committee Attend Official Event

NET Patient Network committee attend special event to mark the awarding of the Centre of Excellence Awarded to St Vincent’s Hospital.

Guest of Honour was Minister Simon Harris and Prof. Dermot O’Toole attended, carrying the actual Certificate of Excellence.

Included is most of the NET Patient Network committee, myself, Eoin O’Leary & Mary O’Brien and Carmel Connellan were not at the event due to health reasons.

Centre of Excellence Awarded to St Vincent’s

St Vincent’s University Hospital was recognised and awarded a Centre of Excellence certificate for NETs as the 39th ENETS Centre of Excellence at the ENETS Conference in Barcelona on Friday March 10th.

The NETs clinic in St Vincents was audited last November after our patient day. The review panel from ENETS was satisfied that the clinic meets its criteria for providing the best of care for NET patients under the ENETS Centre of Excellence programme.

This is a great achievement and underlines that all Irish NET patients should seek referral for review and/or second opinions to the NETs clinic in SVUH or through one of the satellites in Cork and Galway. The NET expertise is here and your best chances of survival are by getting clinical review and treatment advice through this centre of excellence.

We all know that the clinic in SVUH is not perfect and a lot more needs to be done. We need to push for more resources, more nurse availability, finalising the Ga-68 PET scanner, better and smoother referral options, and so many more.

However, this award is a positive step forward for NET patients in Ireland and sets NET services in this country on a formal setting. It gives us, NET Patient Network, the opportunity to ensure that NET patients have a voice which is heard and to give our feedback on how the direction and delivery of NET services in this country is working. As a patient group, we plan to use it.

NET Patient Network now members of INCA

We are officially members of INCA, (International Neuroendocrine Cancer Alliance).

More info here

Join Us On Facebook

To help you get into our Facebook Groups, we have written instructions, you can start by clicking here or going to http://netpatientnetwork.ie/index.php/forum/facebook/

Join NET Patient Network

Please join us as a NET patient or family member so that we can strengthen our voice in dealing with the medical establishment and keep you informed of news and events in Ireland.

As patients, we have all faced the day when we were given our diagnosis and the world fell apart for us and our families. At this terrible time, we naturally seek more information, to know more about our disease and to want to know what is ahead for us.

This website attempts to provide information with an Irish focus for newly diagnosed and existing NET patients in Ireland. It will also disseminate information about events and news related to NETs.It can be a great comfort to talk with other patients and share experiences.

Our final objectives are to establish and maintain active links with the Irish medical establishment and with international NETs groups. NET Patient Network will advocate for the establishment of best medical practice, as implemented in other jurisdictions, and for best service levels to be provided to Irish patients.