General Information

Right now, you are probably more than a bit scared, intimidated and depressed. So let’s set some information straight.

If this is not the first website you have visited, then you may have concentrated on statistics. While that may seem logical, just remember that statistics don’t paint a whole picture. First of all, it takes a long time to be able to prove that statistics can be updated. Think about it. If you came out today with a new treatment for any disease, and that treatment people were living 1 year with that disease, but your gave new treatment gave them 10 years…you could not publish that information for ten years to prove they live that long. Secondly, people are not statistics. Each is an individual, and each case is different.

Living with Carcinoid/NETs can be a chronic disease, much like living with diabetes, just a bit more intense. How long will you live? NO ONE can tell you that. Any doctor who offers up a number is playing God. (please note that MD does not stand for Minor Deity)

Additionally, a lot of information on the Internet is OLD information. Once a web page is published, it resides somewhere forever. Rarely does anyone take down an obsolete web page. And even if they do, it is probably cached in some server somewhere. Check the dates for that page, not just the web site which can fool you by their changing one page on the site and the new date gets applied to every page.

Depending upon whose study you read, you have probably been misdiagnosed for an average of 2 to 11 years.

For years, the rate of new diagnosis in the US was reported at about 5,000 patients per year. Because of a variety of factors, especially more awareness, that rate has climbed to 9,000 to 15,000 per year (depending on who’s statistic you follow). Consider how long a Carcinoid/NET patient can live and the rate of prevalence is exceptionally high. That means there are more and more of us out there.

Here, you can have the chance to learn some of the basics so you can educate yourself, become your own advocate, make educated choices, and even help to educate some of the members of your medical team.

What can you expect from your first visit to a Carcinoid?NET specialist? Well, you can start by meeting them on their level. Learn as much as you can. Write your questions down. Keep a pad nearby to jot questions down as they pop into your head. Take a trusted caregiver person with you. Take a tape recorder and ask if you can record the meeting. Take notes (so bring a pad). For the most part, they will take the time you need to get all your questions answered.