"The Ann Edgar Charitable Trust
"The Ann Edgar Charitable Trust
"The Ann Edgar Charitable Trust"

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Covid-19

ABOUT NETs

WHAT IS A NEUROENDOCRINE TUMOUR?

 

Neuroendocrine tumours (NETs) are a very diverse group of tumours that originate from specialised hormone cells in many different organs including the bowel, pancreas and lung. The small bowel is the most common site affected and sometimes these tumours are called ‘Carcinoids’. Some NETs are completely benign while others behave like cancers with potential to spread (metastasise) to other parts of the body. In many instances, NETs grow very slowly and so prolonged survival is possible, even in people who have cancer deposits in many different organs.

HOW DO NETS PRESENT?

 

NETs can present in a whole variety of different ways and often individuals have had symptoms for many years before the diagnosis is finally made. NETs arising in the bowel most commonly present with tummy pain, and occasionally these tumours can cause an actual obstruction or blockage in the bowel. Pain can occur if the tumours have spread to other parts of the body, such as the bones or the liver. NETs can produced a wide variety of different hormones and these can also cause specific symptoms and problems. Carcinoid syndrome can result from primary bowel tumours that have spread to liver or the lungs and NETs arising in the pancreas can produce a wide variety of different hormones.

WHAT IS CARCINOID SYNDROME?

 

Carcinoid syndrome is a group of symptoms that can occur in patients with carcinoid tumours. Not all patients with carcinoid tumours will have carcinoid syndrome. The syndrome occurs when carcinoid tumours overproduce hormones such as serotonin that normally circulate throughout your body.

 

Common symptoms include flushing, diarrhoea, heart valvular lesions, telangiectasia, wheezing, cyanosis and pellagra.

WHAT CAUSES CARCINOID SYNDROME?

 

Carcinoid tumours often do not produce noticeable symptoms until they spread to the liver. That’s because most of the blood circulation from the gastrointestinal tract must pass through the liver before it reaches the rest of the body. The liver has strong enzymes that break down and neutralize most of the excess serotonin and other substances produced by the carcinoid tumours, preventing them from reaching tissues where they can cause symptoms. When carcinoid tumours spread to the liver, the substances they overproduce can more easily reach your bloodstream, and reach tissues where they can cause symptoms.

WHAT IS THE LONG TERM OUTLOOK FOR PEOPLE WITH NETS?

 

The prognosis of patients with NETs is determined by the extent to which the disease has spread at the time of presentation. If the tumour is localised to one area and can be removed surgically, then cure is possible. If the NETs have spread to other parts of the body, then cure is usually not possible. However, because of the slow-growing nature of NETs, prolonged survival is possible and generally long-term outcomes are better for people with NETs than for many other forms of cancer.

SCONET 

The SCONET Guidelines  are consensus guidelines for the management of patients with Neuroendocrine Tumours and although intended for doctors and nurses they are  worth a read.

ABOUT US

WELCOME TO THE ANN EDGAR CHARITABLE TRUST

The Ann Edgar Charitable Trust was founded by Ann Edgar, who was diagnosed with Carcinoid Syndrome in 2005 and who passed away in August 2011.

It was Ann’s cherished wish to leave a legacy that would continue to help others cope with carcinoid syndrome and all forms of Neuroendocrine Tumours. (NETs). The charity was officially registered on 1 September 2011.  

 

When Ann was diagnosed with Carcinoid Syndrome her first frustration was the difficulty she found in obtaining relevant information and support for the condition within the UK.

 

The Trust is a general Charitable Trust the main aims of which are to provide information, support, inspiration and hope to those affected by Neuroendocrine Tumours, - patients, carers, family, friends and colleagues. The Trust is aware that when someone is diagnosed with this condition it affects everyone around them.  In addition the Trust seeks to engage with other support providers to strengthen the network of support for all people affected by NETs.

The Trust is run by a board of trustees who provide their services entirely on a voluntary basis.  

  • Hon. President & Acting Chair - David Drummond

  • Treasurer - Margaret McLean

  • NET Natter - Coordinator Priscilla Fernandez

  • Secretary - Carolyn Robertson

  • Medical Advisors - Professor Mark Strachan & Iona Scott

 

Our membership is growing which is a reflection of the increasing numbers of new diagnoses in Scotland, all members are very welcome to take part in all of the trusts activities.

 

We are very aware that every patient is different and it is not our intention to dispense medical advice, anyone seeking medical advice should contact their doctors.

 

The money we raise will be used in Scotland to support people affected by NETs and carcinoid syndrome and to raise awareness of the condition.

 
 
 

GETTING INVOLVED

DONATIONS

 

Every penny counts and The Ann Edgar Charitable Trust is grateful for all donations made – no matter how large or small. Your donations always make a difference especially to those we aim to help and support and all donations are most gratefully received and will be acknowledged.

 

How To Donate

The easiest way to donate is to follow this link to  Paypal

 

 

 

or to our Just Giving page

 

 

 

By Post

Donations can be posted to us at the address on our contacts page.

 

Gift Aid

If you are a UK tax payer you may wish to consider completing a Gift Aid declaration by agreeing to ‘gift aid’ your donations to The Ann Edgar Charitable Trust.

 

Give As You Earn

Payroll Giving is becoming more popular as it lets you make donations straight from your monthly salary. 

 

Standing Orders

You can also make a donation by setting up a standard order with your bank and by getting sponsorship for a fundraising activity.

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FUNDRAISING

 

Fundraising is much easier when you do something that interests you, so be honest with yourself, plan ahead and just go for it!

 

Many ideas are tried and tested but some of the best come about when people try to think outside the box a little bit. Even if you can't come up with of a totally new fundraising idea, try to think how you might change or tweak an existing one.

 

To help, here are a few ideas that always work and are relatively easy to organise.

 

  • Marathons, Half Marathons & Fun Runs

  • Walks, Bike Rides & Swims

  • Abseils & Zip Wire

  • Prize Draws, Quizzes, Raffles, Tombola's & Auctions

  • Corporate Dinners & Charity Ball

  • Head Shaves, Hair Colour & Baths

  • Street Collections & Carol Singing

  • Recycling mobiles, batteries, CDs & DVDs

  • Book Swap/Sale

  • Christmas Gift Wrapping

  • Office Ideas – dress down days, guess the weight, swear box, tuck shop, bake sale, bingo, coffee mornings, bonny baby

  • Sponsored Silence

  • BBQ’s

  • Dog Walks

  • Welly Throwing

 

ABOUT NETs

WHAT IS A NEUROENDOCRINE TUMOUR?

 

Neuroendocrine tumours (NETs) are a very diverse group of tumours that originate from specialised hormone cells in many different organs including the bowel, pancreas and lung. The small bowel is the most common site affected and sometimes these tumours are called ‘Carcinoids’. Some NETs are completely benign while others behave like cancers with potential to spread (metastasise) to other parts of the body. In many instances, NETs grow very slowly and so prolonged survival is possible, even in people who have cancer deposits in many different organs.

HOW DO NETS PRESENT?

 

NETs can present in a whole variety of different ways and often individuals have had symptoms for many years before the diagnosis is finally made. NETs arising in the bowel most commonly present with tummy pain, and occasionally these tumours can cause an actual obstruction or blockage in the bowel. Pain can occur if the tumours have spread to other parts of the body, such as the bones or the liver. NETs can produced a wide variety of different hormones and these can also cause specific symptoms and problems. Carcinoid syndrome can result from primary bowel tumours that have spread to liver or the lungs and NETs arising in the pancreas can produce a wide variety of different hormones.

WHAT IS CARCINOID SYNDROME?

 

Carcinoid syndrome is a group of symptoms that can occur in patients with carcinoid tumours. Not all patients with carcinoid tumours will have carcinoid syndrome. The syndrome occurs when carcinoid tumours overproduce hormones such as serotonin that normally circulate throughout your body.

 

Common symptoms include flushing, diarrhoea, heart valvular lesions, telangiectasia, wheezing, cyanosis and pellagra.

WHAT CAUSES CARCINOID SYNDROME?

 

Carcinoid tumours often do not produce noticeable symptoms until they spread to the liver. That’s because most of the blood circulation from the gastrointestinal tract must pass through the liver before it reaches the rest of the body. The liver has strong enzymes that break down and neutralize most of the excess serotonin and other substances produced by the carcinoid tumours, preventing them from reaching tissues where they can cause symptoms. When carcinoid tumours spread to the liver, the substances they overproduce can more easily reach your bloodstream, and reach tissues where they can cause symptoms.

MORE INFORMATION

 

Our partner organisation Neuroendocrine Cancer UK (formerly the Net Patient Foundation) offers a wealth of information on their website:

NEURENDOCRINE CANCER UK

Newly diagnosed patients may find their handbook publication of particular help and assistance:

NCUK Handbook

your guide to living with neuroendocrine cancer

MACMILLAN CANCER SUPPORT

MacMillan provide information and support on all varieties of cancers

WHAT IS THE LONG TERM OUTLOOK FOR PEOPLE WITH NETS?

 

The prognosis of patients with NETs is determined by the extent to which the disease has spread at the time of presentation. If the tumour is localised to one area and can be removed surgically, then cure is possible. If the NETs have spread to other parts of the body, then cure is usually not possible. However, because of the slow-growing nature of NETs, prolonged survival is possible and generally long-term outcomes are better for people with NETs than for many other forms of cancer.

SCONET 

The SCONET Guidelines  are consensus guidelines for the management of patients with Neuroendocrine Tumours and although intended for doctors and nurses they are  worth a read.

GET IN TOUCH

Contact Details

The Ann Edgar Charitable Trust

c/o The Metabolic Unit

Western General Hospital

Crewe Road South

Edinburgh

EH4 2 XU

Phone: 07376 251249

Email: info@taect.scot

 David Drummond (Chair)

Email: david@taect.scot

Stay In Touch
 
Click HERE to sign up to our update service
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T: 07376 251249

E: info@taect.scot

© The Ann Edgar Charitable Trust

Registered Charity No. SCO42556

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