Carcinoid Cancer Resources for Australia

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Welcome to Carcinoid Cancer Resources for Australians

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Newly diagnosed, an old timer noid or just curious - this website aims to provide resources, support and information about the obscure yet very real carcinoid cancer and other NETs (NeuroEndocrine TumourS) within an Australian context.

 

Carcinoid.com.au is very new... as our group grows we will fill the website with more information. 

If you have something to contribute or would like to keep up with what is going on in the carcinoid arena, please join our community by registering on this website, contributing information or providing a link to relevant material. 

Everyone can help to spread the word!

 

 

 

What is carcinoid cancer?

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If you don't suspect it ...you can't detect it!

  This is a rare neuroendocrine cancer, accounting for 1 in 200 cancers diagnosed (only 0.5% of all cancers).

A carcinoid tumor. is one that excretes excessive hormones into the body. They can release a veritable cocktail of hormones but the most common is Serotonin. Thankfully the liver usually filters out these hormones and their effect is not shown on the body.

About 10% of patients with carcinoid tumours go on to suffer a constellation of symptoms called "carcinoid syndrome"

Carcinoid syndrome is usually caused when the primary carcinoid tumour metastases to the liver. When this happens, the hormones are not filtered out and neutralised by the liver but are excreted into the body to have their wicked way.

Symptoms of carcinoid syndrome can include:

  • Flushing of the face, upper arms and chest
  • Often a change in blood pressure- usually downward but increases are not uncommon
  • Explosive (the best word to describe it) diarrhoea- can be chronic with many episodes a day
  • Breathlessness
  • Asthma like wheezing
  • Tricuspid and pulmonary heart valve damage eventually resulting in in congestive heart failure. Early signs can be lower leg odema (fluid retention).
  • Telangiectasia- little red spots on upper chest and arms- can look like dilated/broken capiliaries or like small red freckles. 
  • Enlarged liver (hepatomegaly) from tumour bulk

Note that symptoms vary from person to person. Some people only every get the flushing and occasional diarrhoea -which often gives rise to some sort of misdiagnosis of menopausal symptoms if a w0oman and/or probably Irritable Bowel Syndrome (IBS).

The rarity of the incidence of carcinoid mailgnancy often means that the cancer goes undetected for many years. The symptoms are often misdiagnosed .

There is a slogan amongst carcinoid patients which rallies us to educate our physicians and medicos "If you dont suspect it ...you can't detect it!" We need to ensure that carcinoid becomes a known disease and one that comes to mind for front line doctors so at least the cancer is supected and ruled out after testing. Too many of our number are misdiagnosed and hence the disease takes it toll on the body until care becomes palliative and not curative.

 

Carcinoid Conference - Adelaide September 5 -10 2009

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  A note from Jenny .Mifsud:  Just thought you may not be aware that there is to be an international conference for enocrine surgeons in Adelaide from the 5th to the 10th of Sept, 2009. 
I am going to try and go the listen to 3 of the international speakers, who are talking about NETS/ pheos, management and latest treatment-

  • Prof. Hellman,
  •  Prof. janice Panieska and
  • Prof. Tom Lennard.
  • My specialist, prof. bruce robinson, from sydney , is giving the plenary  lecture on the molecular genetics of endocrine tumours
If anyone has any further information on this conference ...can you please either post on the forum or email Leonie at This e-mail address is being protected from spambots. You need JavaScript enabled to view it
Last Updated on Sunday, 24 May 2009 00:06
 

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