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.
Why should I see a true Carcinoid Specialist? It is YOUR health. Why not get the best and most informed decision. An interesting (but not documented or studied) trend we have noticed recently is that some doctors seem to be practicing medicine the same way you as a patient have tried to find information. The doctor is confronted with a patient with a disease they know little about and turn to the Internet. They type in Carcinoid (or some similar search term) into their search engine and read the top couple articles that get listed.
Here comes the problem. Those articles that are often the most recent do not tell the whole story. They often list the current “latest and greatest” find for care. The current searches often return new “targeted” therapies (drugs). Doctors often jump to using these, touting their “space age” technology to let the patient think they are getting the best care.
While these drugs have a great place, they are only one bullet in a major, larger arsenal. Doctors with little knowledge often seem to jump to the “new drug”, bypassing the algorithm of preferred treatments and their order. We have even heard of doctors who try these drugs, the treatment fails, and they then tell the patient they have “nothing more to offer” them. How are we finding this? We have patients who contact us after being put on these new treatments and are then looking for other options once adverse events require ending their use.
All treatments have some side effects and risks, some less than others. Our experience is that the “newest” may have a more narrow and lower success rate, and more complications than some older, proven modalities. These older treatments rarely get mention in Internet searches unless searched specifically by name. A true expert will know these options off the top of his/her head.
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.