What is NETs

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What is NETs

• NETs is the umbrella term for a group of unusual,
  often slow-growing cancers, which develop from
  cells in the diffuse endocrine system.
• They are found most commonly in the lung or
  gastrointestinal system, but they can also
  originate in other parts of the body such as the
  pancreas, ovary, and testes, among other sites.

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NETs

• Over 90 of all NETs patients are incorrectly
  diagnosed.
• A correct diagnosis is usually not made until the
  cancer has already spread (metastasized)
• Patients are treated on an average of 5-7 years
  for the wrong disease.
• Early diagnosis dramatically improve outcomes for
  patients

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Symptoms

• The symptoms of NET cancers can vary, depending
  on the location and biological properties. Very
  often, the symptoms are similar to other, more
  common conditions. Early symptoms may include
  vague tiredness or digestive complaints, or there
  may be no symptoms at all.
• Some typical symptoms include the following

• Intestinal Carcinoid
• Bowel obstruction
• Flushing
• Diarrhea
• Abdominal pain
• Wheezing
• Bronchial Carcinoid
• Wheezing
• Cough
• Bloody sputum
• Pancreatic NET
• Epigastric pain
• Chronic ulcer disease
• Intermittent low blood sugar
• Rash
• Diabetes
• Diarrhea

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Diagnosis and Misdiagnosis

• NET cancers are difficult to diagnose. After the
  onset of symptoms, which are often nonspecific
  and vague, a diagnosis can take an average of 5
  7 years.
• If NET cancers are detected early in their
  development, they can often be cured with
  surgery.
• At present, however, most NET cancers are
  diagnosed at a later stage, when they have
  already spread to other parts of the body. In
  these cases, they can rarely be cured, although
  the symptoms can often be managed successfully
  for a number of years.

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Why is detection of NET cancer difficult?

• Size they are often small some NET
  cancers can be less than a centimeter in size
• Location NET cancers can occur almost anywhere
  in the body
• Symptoms these can vary enormously, and some
  patients have no symptoms at all
• Testing there are many different types of NET
  cancer, and a series of specialized tests is
  necessary. A biopsy is a definitive tool for a
  NET cancer diagnosis.

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Treatment options

• The treatment of a NET cancer depends on the size
  and location of the tumor, whether the cancer has
  spread, and the patients overall health.
• These are a complex group of cancers to manage,
  and, ideally, a multidisciplinary team of
  specialists will work with the patient to
  determine the best treatment plan.
• A multidisciplinary team will always have several
  goals in mind as they formulate a treatment plan.

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Juli Spendleys story

• Juli was diagnosed with Neuro-Endrocrine Cancer
  in September 2009 after a year of
  non-specific signs and symptoms.
• She was offered a trial chemotherapy of four
  cycles. Unfortunately, due to the time delay
  prior to diagnosis, this had no effect and the
  tumors had already spread from the lung, to the
  liver and to different bones around the body.
• She later had some radiotherapy to ease the pains
  in her hip, whilst this was helpful, the bone
  metastases have since increased, and hence the
  associated pain has increased.
• The Royal Free Hospital in London are pioneering
  a targeted treatment, aimed specifically at
  blocking the receptors of Neuro-Endrocrine
  Tumors. This is called Radionuclide Therapy, and
  she is eligible for this treatment.
• However, the Dorset PCT have turned down funding
  so her friends and family are helping to raise
  the 24,000 needed to have this treatment
  following her next course of chemotherapy.
• Read more about her story here

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The Juli Spendley Foundation

• In June 2010, Juli and her family set up the JULI
  SPENDLEY FOUNDATION, to assist sufferers, who
  like herself, have been denied funding for
  specific targeted treatments that could prolong
  their lives as well as helping to bring a better
  understanding of this disease to the medical
  profession allowing faster diagnosis and earlier
  treatment. (Click on image below to go to the
  her website)
• Follow the Foundation on Facebook here

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What you can do to help raise awareness of NETs?
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Sign the Proclamation and view map of signatory
locations

• Please click to sign the Proclamation

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Thank you