• 1. Create, and keep current, a list of all medications (prescription, non-prescription, vitamins, etc) that you take. KEEP IT CURRENT (yeah, that is the hard part) and carry a copy with you at all time. You may also want to list any allergies, doctors names & phone numbers, hazards, such as NO EPINEPHRINE, so that if injured it will be found by that nice paramedic rummaging your pockets.
  • 2. A medical alert bracelet is a good idea, since in some cases standard medical protocols can be fatal to "noids" (like epinephrine for shock)
  • 3. Print out a copy of the "Consensus Report on Treatment" (available from the Carcinoid Cancer Foundation website.) Actually, print out a few, carry one with you, and give one to each doctor you see.
  • 4. Not all Carcinoid Specialists really know that much, seek out one of the 1/2 dozen of the best in the US and see one. Some of the so-called specialists are using old treatment protocols, or no treatment at all ("hey, it is slow growing…") Most of the TRUE EXPERTS will consult with you, and allow a local doctor to follow their protocols for routine treatments and follow-up.
  • 5. Do not be afraid to ask questions of ANY medical professional and watch and learn what they are doing. Then watch to make sure they do it right each time (I have blood taken, like a donation, as a treatment, and one day the nurse was ready to stick the needle for the bottle in to my arm-we all have bad days-watch for mistakes). NEVER be afraid to speak up f you think something is not right.
  • 6. If a doctor does not like your "involved" attitude, get another doctor. A good doctor will welcome you involvement and knowledge.
  • 7. You are not limited to have medical treatment that only your insurance covers. There are usually "out of network" benefits, which tend to be more liberal for rare diseases. If you have to pay something out of pocket, decide what your life (or quality of life) is worth.
  • 8. Have an insurance company case worker assigned to you by your carrier, then educate the case worker about your disease.
  • 9. To educate medical professionals, The Carcinoid Cancer Foundation will send you an information package made up just for doctors. If they mail it direct to the doctor, the receptionist usually throws it out. If you bring it and hand it to him/her, they are more likely to read it (also, should a liability issue ever arise, they can not claim they didn't have the latest info, you gave it to them).
  • 10. Keep records of your work history and attendance from the day of diagnosis (or before, if possible). This will help should you ever need to apply for Social Security Disability, because you can show a pattern of full employment and the decline, if it happens. (Sue got approved for SSDI first time, basically I think she buried them with documentation and notes).
  • 11. Remember, what works for one person may not work for everyone, as we are all different and our bodies process things (including medications) differently.
  • 12. You have the right to refuse any medical treatment. It is your body. The doctor may have the charts to navigate the waters, and may know how to read them, but it is still your boat, and you get to drive it where you want to.
  • 13. Who is the doctor (or more than one probably) who missed your Carcinoid? Gently educate them. Give them literature on carcinoid so they don't make the same mistake again. Most Carcinoid patients (at least in the MNYCSG) think carcinoid is not as rare as they think, just misdiagnosed. Don't focus on getting mad at the doctor, he/she is probably only doing what they were taught in medical school, that "carcinoid is rare" and they have beaten in to them to "think of horses, not zebras when they hear hoofbeats". Of course, Sue's family doctor always tells us that when he graduated from medical school, the school president got up and told the graduates that "half of what we have taught you here is wrong, we just don't know which half". Scary, but truthfully sobering.
  • 14. Don't forget to include and educate the caregivers around you. They want to help, some will not do it as perfectly as you might like, but they need also to know what is going on.
  • Caregivers are actively invited to participate in most support groups.

Copyright 2011, 2012, 2013, 2014, 2015 NJCCN. Information here is not intended to be medical advice, but information for discussion with your medical team