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The NET Patient Foundation: supporting the neuroendocrine cancer community.

For further information and to make contact telephone0800 434 6476 or visit ourwebsite: www.netpatientfoundation.org

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Proud to be part of the International NeuroendocrineCancer Community (INCA)www.netcancerday.org

© NET Patient Foundation July 2014

Information for people affected byGastrointestinal (GI)NeuroendocrineTumours (NETs)

Gastrointestinal NETswww.netpatientfoundation.org

www.netpatientfoundation.org

3Gastrointestinal NETs


What are neuroendocrine tumours (NETs)?

Neuroendocrine tumours(NETs) are a complex group oftumours that developpredominantly in the digestiveor respiratory tracts, but canoccur in many areas of the body.These tumours arise from cellscalled neuroendocrine cells.

Like all cancers, NETs develop when thespecialised cells undergo changes causingthem to divide uncontrollably and grow intoan abnormal tissue mass (tumour).

Neuroendocrine tumours can be benign ormalignant. Back in 1907, whenneuroendocrine tumours were first classified,they were named ‘carcinoid’ (meaning‘cancer-like’) as they seemed to grow slowlyand were therefore not thought to be trulycancerous. The use of the term ‘carcinoid’ isbeing phased out in medical literature, as wenow know that these tumours can bemalignant. Current terminology is eithersimply neuroendocrine tumours (or NETs) oryour NET will be named dependent on thesite of your primary tumour, for example abronchial (lung) NET, a bowel NET or apancreatic NET.

Where do neuroendocrine tumours occur?

For information about othertypes of NETs, please visit ourwebsite atwww.netpatientfoundation.org

Examples of where NETs can occur asprimary sites or as metastases (spread)

This booklet will focus on malignantneuroendocrine tumours which arise in the gastrointestinal tract (excludingpancreatic NETs).

Brain

PancreasStomach

AppendixLarge bowelSmall bowel

Spleen

Lungs

GallbladderLiver

Kidney

OvaryRectum

5

What is aGastrointestinal NET?

Th ese are NETs that can occurin different areas of thegastrointestinal tract.

The gastrointestinal system is essentiallya long tube running right through the body.This tube has specialised sections thatare capable of digesting material put inat the top end and extracting any usefulcomponents from it, then expelling thewaste products at the bottom end. Thewhole system is under hormonal control.

Gastric NETs These are the NETs of thestomach. They represent fewer than 1% ofall gastric cancers. There are four types ofgastric NET:

Type I: This group is the most commonand represents about 70-80% of allgastric NETs. These are associated withatrophic gastritis and can over-producegastrin. Typically, the patient will presentwith polyps. These polyps may notbe cancerous, but they may reoccur.Commonly they are removed, and a regularfollow-up plan put in place.

Type II: This group accounts for around5% of gastric NETs. These occur as partof another condition known as MultipleEndocrine Neoplasia Type 1 (which is afamilial condition). An over-production ofgastrin is also seen, which is known asZollinger-Ellison Syndrome. The tumoursare often quite small and can bemanaged well.

Type III: This group accounts for 15-20%of gastric NETs. These tumours are oftenlarger than Type II and can metastasise.

Type IV: This is a very rare type of gastricNET and has the poorest prognosis.Tumours are often large and advancedat diagnosis.

Appendiceal NETs These NETs areusually discovered incidentally, and quiteoften during surgery for a suspectedappendicitis. If the tumours are less than1cm in size, curative surgery is oftenperformed. There is a group of tumoursthat arise from the appendix that are moreaggressive. Under the microscope the cellsof these tumours are seen to be shapedlike a goblet and therefore are calledgoblet cell tumours. Patients may presentwith metastatic disease due to a lackof symptoms.

Colon NETs These NETS can be largeand malignant, and patients may presentwith a bowel obstruction and bleeding.Initial diagnosis may be for the morecommon colon adenocarcinoma, howeverthe patient may have flushing symptomswith a colon NET due to metastases inthe liver. There is also a group of tumoursthat arise from the appendix that are moreaggressive. This syndrome is still known as‘carcinoid syndrome’.

Duodenal NETs There are many differenttypes of duodenal NET. These NETsproduce many hormones and peptidessuch as serotonin, calcitonin andsomatostatin. Patients may present with‘carcinoid syndrome’, pain or anaemia.

Ileum NETs These tumours are oftenslow-growing, which makes diagnosisin the early stages difficult. Patients maypresent with carcinoid syndrome, bowelobstruction or abdominal pain, but this maybe at a time when the disease has alreadymetastasised. About 20% of patientswith a NET of the ileum have ‘carcinoidsyndrome’.

Rectal NETs These account for about27% of all GEP NETs and 16% of allNETs. In around half of the cases, thetumour is discovered incidentally. Patientsmay present with symptoms such as PRbleeding or change in bowel habit, butoften they are asymptomatic. Patients maypresent with metastatic disease due to alack of symptoms.

Gastrointestinal NETs


7

What is ‘carcinoidsyndrome’?

When neuroendocrine tumoursspread (‘metastasise’), the mostcommon site for metastatictumours (‘secondaries’) is theliver. Other areas of spread can,more rarely, include the bones,the lungs and the lymphaticsystem.

Many NETs have an associated syndromecaused when the neuroendocrine cellsproduce too much of a particular hormone.The most common of these is ‘carcinoidsyndrome’, which is caused when too manyhormones such as serotonin, histamine,somatostatin and chromogranin A areproduced. The symptoms of carcinoidsyndrome vary and can often be highlyindividual.

Typical symptoms include:

• flushing

• diarrhoea

• wheezing

• abdominal pain

• fatigue

• skin changes

It is by no means certain that you willexperience ‘carcinoid syndrome’. Noteveryone with NETs will have this collectionof symptoms, even if their disease hasspread.



Complications

Carcinoid crisis

Sometimes patients may suffer a particularly bad episode ofcarcinoid syndrome triggered by stress, general anaesthetic orcertain treatments.

Symptoms include intense flushing,diarrhoea, abdominal pain, wheezing,palpitations, low or high blood pressure, an altered mental state and, in extremecases, coma.

Without treatment the complications can be life threatening, but if you are having anyprocedures your NET specialist will ensureyou are monitored and may give you aninfusion of a somatostatin analogue as apreventative measure. Your NET specialistwill also liaise with any other team, forexample a surgical team, and pass on theguidelines that are available as a preventativemeasure for patients at risk.

Carcinoid Crisis cards are available from theNET Patient Foundation.

Carcinoid Heart Disease

Carcinoid heart diseasedevelops in around 60-80% ofpatients with ‘carcinoidsyndrome’, although it isclinically significant in a muchsmaller percentage.

Some NETs release chemicals calledserotonin and tachykinins into the bloodstream that travel to the heart and can affectthe cardiac valves.

Fibrotic plaques are deposited onto thevalves and heart muscle, and these caneventually impair the function of the heartand cause leaky valves. Heart specialists donot yet fully understand why they build up,but know that they do in some NET patients,and that they can cause damage to the heart.

For further information see the NET PatientFoundation booklet on Carcinoid HeartDisease.

How are Gastrointestinal NETs diagnosed?

Like all NET patients you canexpect to face numerous testsand scans that will provide yourdoctor with information aboutthe disease, its spread and therate of growth.Some of the tests you might undergo include:

Biopsy This involves taking a piece of tissuefrom the suspected tumour and having itanalysed in the laboratory by a specialistcalled a histopathologist. Biopsies are usuallytaken during medical tests (an endoscopy forexample) or operations. The biopsy sample issent to the laboratory and the cells arelooked at very closely under the microscopeto see if they are normal or cancer cells. NETcells look quite different to normal cells.Doctors can sometimes tell from biopsieswhere in the body a cancer has started.

Biopsies are very important in medicine. It isvirtually impossible to diagnose some typesof cancer any other way. Often, the only wayto be sure of the diagnosis is to actually lookfor cancer cells under the microscope.

Blood tests You will be asked to have afasting gut hormone blood test, and bloodwill also be collected for a range of othertests.

Doctors will be looking for certain NETmarkers, particularly chromogranin A and B,and for evidence of a rise in certain peptidesand hormones in the blood.

For further information see the NET PatientFoundation Factsheet on Fasting GutHormone Profile.

Other blood tests may include:

• Full blood count

• Kidney function test (urea and electrolytes)

• Liver function tests

• Thyroid function tests

• Pituitary hormone screen e.g.adrenocorticotrophic hormone (ACTH),prolactin, growth hormones and cortisol

• Serum calcium, parathyroid hormone levels(as a simple screening test for MEN-1syndrome)

Urine testsWhen certain hormones arebroken down by the liver, they are excretedas a substance called 5-hydroxyindoleaceticacid (5HIAA) in the urine. Higher than normallevels of serotonin produced by NET patientsshow up as raised levels of 5HIAA in theirurine.

You may be asked to do a urine collectionover a 24 hour period so that your 5HIAAlevels can be checked.

You will be asked to avoid certain foods priorto and during the test including chocolate,olives, bananas, pineapple and its juice, alltomato products, plums, aubergine, avocado,kiwi fruit, walnuts, brazil nuts, cashew nuts,tea, coffee and alcohol. You will also beasked to avoid certain cough, cold and fluremedies three to seven days prior to the test.This is because they contain substances thatmight artificially raise your serotonin levelsand so give a false test result.

For further information see the NET PatientFoundation Factsheet on The 5HIAA Test.



Endoscopy This is a way of examining yourgastrointestinal tract using a flexible fibreoptic tube called an endoscope. The tube caneither be inserted down the back of thethroat, a procedure called a gastroscopy, orinto the colon via the rectum (back passage),a procedure known as a colonoscopy. Youwill be offered sedation before either of theprocedures, and the doctor may removesamples of any suspect areas of tissue foranalysis.

Wireless Capsule Endoscopy This involvesswallowing a small capsule (the size of a largevitamin pill), which contains a colour camera,battery, light source and transmitter.

Capsule Endoscopy This involvesswallowing a small (the size of the largevitamin pill) capsule, which contains a colourcamera, battery, light source and transmitter.The camera takes two pictures every secondfor eight hours, transmitting images to a datarecorder about the size of a portable CDplayer that patients wear around the waist.

Endoscopic ultrasound This is usuallycarried out under sedation and involveslooking at the gastrointestinal tract with aflexible camera. The test can help pick upsmall tumours that might not be clearly visibleon a scan.

Octreotide scan This is a useful diagnostictest that can help reveal the site of tumours.Some NETs have special receptors on theirsurfaces called somatostatin receptors.Octreotide is a somatostatin analogue, asubstance that copies or mimics the action ofsomatostatin. When octreotide is combinedwith a mildly radioactive agent and theninjected via a vein in the arm, it sticks tosomatostatin receptors on the tumour surfaceand the tumours light up on the screen asradioactive ‘hot spots’.

MIBG scan This is a similar type of scan tothe OctreoScan, except a different radioactivelabelled substance is used. A radioactive MIBG will show up thosetumours which have receptors for meta iodobenzyl guanidine (MIBG) on the surface.

CT scan A computerised tomography (CT)scan provides a three dimensional picture ofthe inside of the body. It can be used todetermine the position and size ofneuroendocrine tumours and regular scansare useful to find out the rate of tumourgrowth.

MRI scan This ‘whole body’ magneticresonance imaging (MRI) scan can help revealwhere the tumours are positioned. It usesmagnetism rather than X-rays to take picturesof the inside of the body. For some parts ofthe body and for some types of tumour, it canproduce clearer results than a CT scan. Forother situations, the CT scan is better. MRI isbetter than CT at showing how deeply thetumour has grown into body tissues.Your owndoctor will know which is the best type ofscan for you.

PET scan There are different types ofPositron emission tomography (PET) scanthat may be used for NET patients. PETscanners are used in many cancer types. The scan looks for the activity of the celltissue and the growing speed of the cells.

Like the octreotide scan a special tracer (mostcommonly called FDG [18F]-fluorodeoxyglucose) is injected intravenouslyand the PET camera then produces a 3-dimensional image, highlighting any abnormalactivity.

More recently a PET scan is used incombination with a CT camera which is amore advanced diagnostic tool.

A PET scan is not required for everyone but more likely to be used in more aggressivedisease.

Another type of PET scan is the GA-DOTA-octreotate PET scan, which has been shownto have a higher sensitivity (can see more) forNETs compared to the octreotide scan. Notonly is this a more sensitive scan but it is alsomuch quicker than the octreotide scan andresults are available in a shorter time. This isnew technology and an advancement in NETscanning but at present there are only a fewavailable in the UK.

Bone scan You will be given a small injectionof radioactive tracer which over time will beabsorbed into your skeleton. It takes about three hours for this to occur.Pictures of your skeleton are taken in order tohelp your doctor determine whether there areany problems associated with it. Thisprocedure takes about ten minutes, and youwill be asked to return for the second set ofpictures three hours later. For this second setof pictures you will again be asked to lie or sitin front of the gamma camera. The scan willtake approximately 30-45 minutes.

Ultrasound scan Ultrasound imaging, alsocalled ultrasound scanning or sonography,involves exposing part of the body to high-frequency sound waves to producepictures of the inside of the body. Ultrasoundexams do not use ionizing radiation (as usedin X-rays). Because ultrasound images arecaptured in real-time, they can show thestructure and movement of the body’sinternal organs, as well as blood flowingthrough blood vessels.

How are Gastrointestinal NETs diagnosed?(continued)



Treatments

Patients should ideally betreated within a specialistmultidisciplinary team (MDT).

Each patient will have anindividualised treatment plan:there are a number of optionsavailable, depending on the type and location of the tumour,and the general well-being ofthe patient.SurgeryIf the tumour is contained in one area(localised), or if there has been only limitedspread, surgery is usually the first choice oftreatment. If it is possible to remove thetumour completely, no other treatment maybe necessary.

If the tumour has spread to other parts of thebody (metastatic), surgery may still bepossible to remove the part of the tumourthat is producing too many hormones. This isoften referred to as tumour debulking.

Curative surgeryThis is when the cancer has not spreadoutside the organ or area where it firststarted. If the tumour can be removed wholeand intact with a surrounding margin of clear,healthy tissue then the surgery is potentiallycurative and no other treatment may benecessary. A follow-up plan will need to beput into place after surgery.

Palliative surgeryWhen the tumour or tumours have alreadyspread or become too large to removecompletely, then surgery may be considered.If the tumours are causing symptoms bypressing on other organs or by releasinghormones then surgery may be performed toreduce the symptoms by removing orbypassing the part of the disease that iscausing the problems.

Pre-emptive surgeryThis is when an area of tumour is criticallyplaced close to an important structure suchas a blood vessel or the bile duct or bowel.Even if the disease cannot be cured, byremoving it all future problems can beprevented by removing disease from keyareas before the vital structure has beendamaged or blocked.

Cyto-reductive surgeryAll of the many medical treatments for NETcancers aim to reduce symptoms andprolong survival by cyto reduction.

This means reducing the number of livingtumour cells inside the patient. Operationscan also be used to achieve this when thedisease has already spread, by surgicallyremoving bulky areas of tumour to reduce thetotal number of cancer cells inside thepatient. Cyto-reduction often involves othertreatments used in combination with surgery.

Cardiac surgeryThis involves valve replacement and may berequired for patients with carcinoid heartdisease. Most planned surgery for NETcancers should be carried out in specialistunits where the surgeons work as part of ateam including oncologists,gastroenterologists, nurses, radiologists andmany other doctors all of whom haveparticular expertise in managing NETcancers. These are rare and complextumours so it is best to have a dedicatedteam of experts jointly involved in decidingwhich treatment is best.

Somatostatin AnaloguesDaily or monthly injections of somastostatinanalogues are available to control some ofthe unpleasant symptoms caused by thetumours. Somatostatin analogues aresynthetic versions of somatostatin, anaturally occurring hormone produced in thebrain and digestive tract that inhibits therelease of several other hormones andchemicals from our internal organs.

Injections of these analogues can stop theoverproduction of hormones that causesymptoms such as flushing and diarrhoea.

Recent clinical studies have shown thatsomatostatin analogues can also be used tohelp stabilise (stop the growth for a period oftime) some low grade NETs, and furtherstudies are ongoing to see how well thesedrugs work on different types of NET.

Targeted Peptide Receptor Radionuclide Therapy (PRRT)These treatments are sometimes referred toas ‘magic bullet’ therapies. The treatmentsare based on using different radiolabelledpeptides which target receptors on thetumour surface. In PRRT for neuroendocrinetumours, the radionuclides commonly usedare indium -111, lutetium-177 and yttrium-90.The basis for which treatment is suitable forwhich patient is the diagnostic tracerimaging. To decide whether this therapy issuitable, you will be asked to take anOctreotide, PET or MIBG scan as describedin the diagnosis section. The results of thesescans will indicate whether or not you havethe correct receptors present and whetherthis sort of therapy would be an option.

SIRTSIRT stands for Selective Internal RadiationTherapy. It is a new way of usingradiotherapy to treat liver metastases whichcannot be removed with surgery.

The doctor inserts a thin tube called acatheter into the hepatic artery. This is themain artery which supplies blood to the liver.They then send tiny beads calledmicrospheres down the catheter and theseget stuck in the small blood vessels aroundthe tumour. The microspheres contain aradioactive substance which give a dose ofradiation to the tumour. The microspheres arealso called SIR-spheres and the radioactivesubstance is called yttrium 90.



Treatments (continued)

InterferonInterferon alpha is a man made copy of asubstance that the body makes naturally. Thebody makes interferon as part of the immuneresponse. This is when the body reacts toanything it recognises as ‘foreign’ orabnormal, for example infection or cancercells.

Interferon works in several ways. It directlyinterferes with how cells grow and multiply,and it stimulates the immune system byencouraging immune system cells, such askiller T cells, to attack cancer cells. It alsoencourages cancer cells to producechemicals that attract the immune systemcells. It is sometimes referred to as biologicaltherapy or immunotherapy and is used totreat some patients with NETs.

In some patients it is given on its own, butcan also be given as a combination therapywith a somatostatin analogue.

EmbolisationIf the tumour has spread to the liver, you maybe offered hepatic artery embolisation (HAE).In this procedure, a catheter is placed in thegroin and then threaded up to the hepaticartery that supplies blood to the tumours inthe liver. Tiny particles called embospheres(or microspheres) are injected through thecatheter into the artery.

These particles swell and block the bloodsupply to the tumour, which can cause thetumour to shrink or even die. This treatmentcan also be combined with systemictreatments in some patients where thetumour has spread. It is a procedure thatwould be carried out by a specialist called an

interventional radiologist. The patient wouldbe sedated for the treatment.

Sometimes this embolisation process iscombined with chemotherapy (called HACE(Hepatic Artery Chemoembolisation) or TACE(Transcatheter Arterial Chemoembolisation)or radiotherapy (RMT or SIRT).

Radiofrequency Ablation (RFA)This may be used when a patient hasrelatively few secondary tumours(metastases) in the liver. A needle is insertedinto the centre of the tumour and a current isapplied to generate heat which kills thetumour.

ChemotherapyThis may be an option for NET patientsespecially those with pancreatic, bronchial orhigh grade NETs. Not all NETs respondequally to chemotherapy, therefore carefulselection of patients is imperative so as tomaximise the chance of response and avoidunnecessary toxicity. Many chemotherapytreatments involve intravenous drugs,however there are now also oralchemotherapy agents and your NET doctorwill discuss the most appropriate option withyou. The histology of the tumour i.e. how itlooks down the microscope after biopsy oroperation, may help determine the type oftreatment you receive.

Chemotherapy may sometimes berecommended after surgery (adjuvanttherapy). You may be asked to be involvedwith clinical trials currently underway whichare looking into the different combinations ofchemotherapy agents that are mostappropriate for different types of NETs.

Sutent (Sunitinib)Sutent is a medication that comes in capsuleform. It is mainly used in patients withpancreatic neuroendocrine tumours.

It works mainly by blocking a process calledangiogenesis. Angiogenesis is the process ofmaking new blood vessels.

Tumours need a good blood supply to growand Sutent helps stop that process. The drugcomes under an umbrella group of drugsknown as tyrosine kinase inhibitors.

Affinitor (Everolimus)Affinitor is another medication for patientswith pancreatic neuroendocrine tumours.

It also comes in a capsule form and is a typeof drug that interferes with the process ofnew cancer growth. The drug comes underan umbrella group of drugs known as mTORinhibitors.

Clinical trials are running to look at theeffectiveness of this medication in other NETtypes either alone or in combination withother NET medications.

Clinical TrialsClinical trials are medical research trialsinvolving patients. They are carried out to tryto find new and better treatments.

Carrying out clinical trials is the only sure wayto find out if a new approach to cancer careis better than the standard treatmentscurrently available.

You can find out more about current NETtrials at: www.netpatientfoundation.org/category/patient-resources/research/

No treatmentNo treatment or watchful waiting may besuitable for you if your NET is not currentlycausing you any symptoms or problems andthe tumour(s) are stable. You may also haveother health conditions that would make theNET treatment inadvisable.

Follow upThe follow-up intervals are highly variabledepending on the clinical situation,functionality (whether any syndrome ispresent), stage, grade and time sincediagnosis. Intervals may vary, but generally follow-up should be tailored toindividual needs and is usually every 3-6 months initially.



17

Multidisciplinary teams



The care of NETs can becomplex, and for the patient thejourney can encompass not onlya whole host of emotions, butalso a whole range ofinvestigations, treatments andhealthcare professionals. Thevery fact that there is often notjust one treatment option atdiagnosis and throughout thepatient journey, means thatthere has to be a collaborationbetween all key healthcareprofessional groups, who aremaking clinical decisions forindividual patients.

This collaboration has been termed an MDT(multidisciplinary team). This is a formula thatis now being used across the world in thecare of cancer patients.

An MDT will usually be formed by a particularspecialist with expertise and interest in NETsand other adrenal tumours. This specialist iscommonly an endocrinologist or oncologist.

A patient may see some of or all of thefollowing people:

Gastroenterologist

Oncologist

Surgeon

Endocrinologist

Cardiologist

Radiology staff

Nuclear medicine physician

Dietician

Nurse Specialist

Palliative Care Team

Pain Team

General practitioner/ Practice Nurse

Counselling Staff

Various Technicians

Clinic Staff

Hospital Staff

Hospice Team

Patients can feel more confident in theknowledge that all aspects of their care havebeen discussed and that the best possibletreatment plan will be formulated. A wellcoordinated and disciplined MDT is a veryimportant aspect for care when striving toachieve the best quality of life and the bestoutcome for NET patients.

Being diagnosed with cancer can be aconfusing and frightening time for you andyour loved ones. Although your healthcareteam will do their best to support you,medical appointments can be stressful and itis worthwhile to be reminded of ways to getthe most out of each appointment.

A few things to keep in mind:

• The most important member of thehealthcare team is YOU

• YOU know more about YOU than anyoneelse does

• Your doctor can help you more if you arean active partner in your treatment

• If you are dissatisfied with the care that you receive, and discussion with yourdoctor does not resolve the situation, youcan ask for a second opinion - how youfeel about the care you receive is the most important thing.

Tips:

Bring a trusted friend or family member withyou to the appointment if you can. If you arefeeling anxious, you may not hear everythingthat’s said, or ask all the questions youwanted to. It helps to have additional earsthere to listen, and your guest may help tomake sure your concerns are brought up.

Try to get into the practice of taking notes onhow you are feeling, and take these notesinto your appointments.

Write down a list of questions you want toask. If you don’t understand the answers toany of your questions, don’t be embarrassedto ask for the answer to be repeated orrephrased. Make sure you know who yourpoint of contact is and how to get hold ofthem in case you have questions later.

Deciding on a treatment strategy can bedifficult so choosing to get a second opinionis quite common. Physicians are usually veryopen to this because they appreciate the factthat making an effective treatment choicecan be very challenging.

If getting a second opinion through yourspecialist is not possible, you can get areferral from any of your physicians, includingyour general practitioner.

You have the right to know as much aboutyour own prognosis as you wish and youhave the right to know the overall treatmentstrategy, including what options are availableto you if initial treatments are not successfulin stabilising your disease.

You have the right to make decisions foryourself, even if the decision is againsthaving medical treatment or to end medicaltreatment.

Gastrointestinal NETs 19


Information resources Our free information resources are for anyoneaffected by NETs. They are here to answeryour questions, help you make informeddecisions and ensure you know what toexpect. All of our information is written andreviewed regularly by healthcareprofessionals and people affected by NETs,so you can trust the information is up-to-date, clear and accurate. You can order ourpublications by sending us an email or callingthe helpline. All our publications can also bedownloaded from our website.

Other organisations NHS Choices

Information on clinical trials and treatmentcentres, including reviews and ratings.

www.nhs.uk

Cancer Research UK

Trusted information on all cancer types.

www.cancerresearchuk.org

Macmillan Cancer Support

Macmillan Cancer Support providespractical, medical, emotional and financialsupport to people living with cancer and theircarers and families. Over the phone, itscancer support specialists can answerquestions about cancer types andtreatments, provide practical and financialsupport to help people live with cancer, andare there if someone just wants to talk.

Its website features expert,high-qualityinformation on cancer types and treatments,emotional, financial and practical help, andan online community where people can shareinformation and support. Macmillan alsofunds expert health and social careprofessionals such as nurses, doctors andbenefits advisers.

www.macmillan.org.uk

General enquiries: 020 7840 7840

Helpline: 0808 808 0000

Textphone: 0808 808 0121 or Text Relay

Further Support

NET Patient Foundation From diagnosis and throughout treatmentand beyond our services are here every stepof the way. Below is an overview of all theservices we offer to people living with andbeyond NETs.

Helpline – 0800 434 6476 Our free, confidential helpline is for anyonewho has questions about NETs(neuroendocrine tumours). Your call will beanswered by one of our nurses or trainedstaff members with experience of NETs.Whatever your concern, you can be confidentwe will understand the issues you might befacing, and that the information you receivewill be clear and up-to-date. We will also let you know where else you can go for further support. The helpline isopen 10am-2pm Monday to Friday. We operate a call-back service for those who wish to leave a message out of hours.

Website – www.netpatientfoundation.org We know how important it is to understandas much as possible about your NET. Ourwebsite is here round-the-clock giving youinstant access to information when you needit. As well as clinical information, you will findreal life experiences and access to the largestonline NET community in the UK, so you canshare your questions or concerns with otherpeople in a similar situation.

Discussion forums Through our discussion forums you canexchange tips on coping with the side effectsof treatment, ask questions, shareexperiences and talk through concernsonline. Our dedicated areas for populartopics should make it easy for you to find theinformation you’re looking for. The discussionforums are easy-to-use. If you’re feelinganxious or just need to hear from someoneelse who’s been there, they offer a way togain support and reassurance from others ina similar situation to you.

Information and support sessions We run information and support sessions forpeople living with NETs. These meetingsinclude talks from some of the country’s topNET specialists plus invaluable Question &Answer sessions and an opportunity to meetother NET patients. For information aboutmeetings in your area, please see ourwebsite or call our helpline.

NET Natter groupsThese are informal groups which meet locallyon a regular basis. To find out if there is aNET Natter group in your area, or if you’d liketo set one up, please visit our website.

Have you visitedus online?


Our website is packed full of information that willhelp you find out more about the NET PatientFoundation and stay up-to-date with our services,campaigning and fundraising.

We provide high quality information and support forNET patients, their families and carers.

Visit our website for...

� Information on NETs

� Support in your area

� Patient meetings and events

� NET clinics and research

...or get Social!

@netpatientfound

www.facebook.com/NetPatientFoundation



About us

The Foundation has thefollowing aims:

• To provide support, education andinformation to anyone affected byneuroendocrine cancers

• To advocate for neuroendocrinecancer patients so that they mayachieve the best possibleoutcomes

• To encourage standardised care forall NET patients

• To provide community supportivecare to patients and their carers orfamily members

• To raise awareness of NETsthroughout the UK

• To raise funds for clinical researchprojects.

If you found this bookletuseful and would like tomake a donation to the NET Patient Foundation,please contact us.

Did you know? • Over 50% of patients are diagnosed whenthe cancer has already spread

• Early diagnosis significantly improvesoutcomes for patients

• There are dedicated NET clinics around the UK. Find out where atwww.netpatientfoundation.org

Why the moth? We have chosen the moth as our logo tosymbolise this ‘camouflaged’ condition. Weaim to encourage medical professionals toconsider an uncommon alternative whensymptoms persist (i.e. a NET rather than IBS).

“When you see an insect beatingits brightly patterned wingsagainst your window, don’tassume it’s a butterfly. It couldbe a moth.”

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