1) Contact the Carcinoid Cancer Foundation – call 888-722-3132, Eastern Time, to inquire about neuroendocrine cancer specialists. You will need a specialist to work with your local oncologist for your ongoing and follow-up care. A list of experienced physicians can be found by clicking here: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.
2) Know that you can FIRE your local doctor if he/she is not willing to provide you with the correct treatment.
3) After you visit with the specialist, encourage your local oncologist to call him/her and discuss your condition and treatment.
4) Read all you can about carcinoid and related neuroendocrine tumors. The first website you may want to visit is: http://www.carcinoid.org the site for the Carcinoid Cancer Foundation.
5) It is important to note that a lot of the information you read on the Internet will be out-of-date, so don’t be frightened by the statistics you see. If you are newly diagnosed, the first thing you may look for are the statistics. That’s only natural when you have been diagnosed with a neuroendocrine tumor. Most of the statistics you see are based on old data. Look at the dates of the reference material. New drugs and procedures have been developed over the years, which have very positive bearing on your longevity.
6) Immediately start a notebook/medical record summary to bring with you when visiting your doctors. Let your doctor know that you are going to be very proactive in your treatment. and that your treatment will be a team effort right from the start. My treatment was going to be a team effort right from the start.
7) You will be having lots of tests and procedures, and you should keep an updated profile to give to your doctors, and also to keep on your person and/or in your car in case of emergencies. Also make sure to obtain copies of all tests and reports and keep them in your notebook.
8) If you have a neuroendocrine tumor or carcinoid syndrome, it is advisable to wear a medic alert ID indicating that you should not receive epinephrine, which could precipitate a carcinoid crisis. Octreotide (Sandostatin) will control this crisis. One exception is the administration of epinephrine in the case of an allergic anaphylactic reaction (i.e. a bee sting), so it cannot be avoided in this case, just make sure that octreotide (Sandostatin) is also available.
9) There are several online support groups which might be of interest. CLICK HERE for a list of online groups.
10) As soon as possible, attend a local support group function or a neuroendocrine tumor patient conference. For a list of support groups that meet in person CLICK HERE.
11) Don’t sit around and isolate yourself. It is very easy to get depressed. Get out and work with others as much as possible.