Carcinoid Cancer, Carcinoid Syndrome and information on Neuroendocrine Tumors (NETS)

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

For those of you wanting to know more about carcinoids and the finer details, we have provided a few links to those sites we have found the most helpful while investigating Eric's condition. We will continue to add and refine these links as we discover more.

A word of warning about the internet ...and its amazing array of information...

There is a lot of information out there and we can all very easily fall into the trap of deciding that such and such is the case or that so and so must have a very rare and serious condition when often a very simple and non quite so threatening condition is the reality.

By all means research symptoms, treatments and even a prognosis but do always check with your health adviser before deciding that you, a family member or a friend has a certain condition. Both Eric and Leonie use the internet extensively to look for treatments, medical trials and other information...but we will always defer to the appropriate physician when it comes to diagnosis and treatment options. After all they are the ones with the knowledge and expertise. All we can do is aim to be informed of the options available and hope to understand the pathways placed before us.

Carcinoid Cancer Links

Carcinoid Syndrome Good description of the cancer and the syndrome. Eric has been exhibiting some of the symptoms of the syndrome for some time now - flushing, diarrhea and high blood pressure- although low blood pressure is the norm during a carcinoid 'episode'.

The greatest source of information I have found on the net concerning Carcinoid Cancer is the Carcinoid Cancer Foundation Web site. There is a mass of information here. For those wanting an introduction to carcinoid cancer, try the Review of Carcinoid Disease page. This page gives a good overview of the disease, its ramifications and current treatments.

When Eric was first diagnosed it was this organisation's pages and contacts that gave us the most up to date information and hope.

If you would like to delve further into the treatments currently available then take a look at the links in the treatment section. Here they talk about the use of Sandostatin (Octreotide) to help control Carcinoid syndrome symptoms as well as a possible role in arresting tumour growth.

The Carcinoid Cancer Foundation has a number of doctors who specialise in Carcinoid Cancer. Being an American organisation these tend to be in the USA but with the wonders of modern technology and the World Wide Web we are able to access the information these amazing people willingly disseminate. For those affected by this disease I would highly recommend that you wander through the organisations pages and look for lectures notes, medical papers and other information that will help you understand this cancer. The more you understand the more involved you can become in your treatment. There are so many options out there for treatment that having a good knowledge of what is available will help you through the treatment maze.