Checklist for the Newly Diagnosed (with thanks to carcinoid.org)
1) You will need a specialist in NETs to provide a second opinion and to assist your local oncologist in your treatment because, unless you are an exception, the local doctors will not know about current treatments or advances in our disease. The main quality you need from your local oncologist is a willingness to follow your lead.
2) After you visit with the specialist for your second opinion, encourage your local oncologist to call him/her and discuss your condition and treatment. Some people have been known to get more than one second opinion. You will know when you have enough information to be the team leader in your treatment and make decisions that will work for you.
3) Know that you can choose another doctor if he/she is not willing to listen to your concerns or information, or to provide you with the correct treatment, proper support or access to experts.
4) Find and attend support group meetings or NET patient conferences. For a list of national support groups check with NETRF.org or Carcinoid.org
5) Once you have been correctly and completely diagnosed, read all you can about your particular NET disease, whether carcinoid, pancreatic or other Nets. Be your own best, well-informed advocate. Keep to major NET sites for the most current information. In addition to our site you may want to visit sites hosted by NETRF.org, Carcinoid.org, TheHealingNet.org, and NET Cancer Awarness Network.
Even if you stick to the major NET websites, which we highly recommend, it is important to note that a lot of the statistics will be out-of-date, so don’t be frightened by the statistics you see. Most of the statistics you see are based on old data as clinical trials take several years to conclude and evaluate. Look at the dates of the reference material and newly published papers. New drugs, treatments and procedures have been developed over the years and are being developed now, which have very positive bearing on our 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. Include a list of tests and procedures, and obtain copies of all tests and reports and keep them available for second opinion consultations. This includes all scans reports and images. Many of these records are contained on your electronic medical record that your provider maintains. For Pet/CT, MRI and Octreoscans you can request a disk be provided to you with your images at the time of your scan.
7) If you have carcinoid or carcinoid syndrome, it is advisable to wear a medical alert bracelet or necklace tag 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.
8) Don’t sit around and isolate yourself. For most of us, there is power in not being alone, in knowing others who have been on this road for many years and in sharing our stories and expertise.
9) Ok. Now. Stop. Live your life. Know that you know where to get the information you need when you need it. Get busy living.