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Starting Out

Once you are diagnosed with Carcinoid, your first step should be to take a deep breath. Next, get information. Knowledge is power. One year from now, you will look back and be amazed at what you have learned, unfortunately, much of it out of necessity.

Find a local support group and go to a meeting. Go to multiple meetings. The amount of information there will astound you. Don't be scared by what some doctor's have said about "people with IV poles, and colostomy bags” being there. Look in the mirror, they look just like you. It is amazing how being able to see and talk to someone in the same boat can help how you feel about the situation, and yourself. Like here, check with your doctor about anything suggested at a meeting.

Any time you go for any test, scan, imaging test, blood work, etc., while at the facility, before the test, ask the technician for a copy you can take home with you. The reason is that should you need a copy later on, such as to go for a consultation with another doctor or specialist, it will save you countless hours of chasing around to medical records departments that are mismanaged to try and collect these things. Secondly, the technician usually has no way to charge you for these copies, and they really don't care about the expense. Medical records does have the ability to charge, and some use outside billing companies, which means that from the time of your request, to the record being pulled, to the outside company billing & getting your payment, to them notifying the facility…(get the picture here) it could be 2 or 3 weeks.

In most states, you (the patient) own the films, the medical facility owns the reports (impressions) of the films. In Feb. 2014 the Federal Government passed a rule that patients may get blood test (lab) results without permission of a doctor to release them. Some labs are mailing them to patients as a matter of routine, but be sure to ask them to be sent to you each and every time.

If you have anything biopsied, make sure they do a KI-67 stain, to determine rate of growth.

If you have anything biopsied, you have the right to get those blocks of tissue, so that other tests can be done by other facilities at a later time. Most facilities save the tissue blocks for several years and some tests not originally done (Ki-67, Chromogranin A staining, Synaptophiasin staining, etc.) can be done at a later time.

Arrange your paperwork in a loose-leaf binder with dividers. Each section can be a different type of test. For example, one for blood work, another for abdominal CT scans reports, another for treatments given, etc. Within each section, put the newest to the front, so it is right on top for someone scanning through it.

Keep your scan "pictures" and carry them in an artist's portfolio (handles oversized stuff), or the cheaper way, ask one of the technicians for an empty film box. Note, they weigh a lot.

When going to a doctor's office, bring someone with you to take notes and listen. You will both be amazed at how much each other hear and don't hear, or just perceive differently. Better yet (I still take someone) but bring a pocket tape recorder with enough tapes & batteries. ASK the doctor first if you can record the consultation.

Employers: Keep your own personal records of your sick time use and try to go back as far as you can recall. It is amazing how many “good” employers may see you as a liability and try to remove you for “some other reason” when they actually fear the cost of their group insurance plan going up because of you costs. of course, they will NEVER tell you that is the reason. Also, should you need to apply for disability at some point, showing a pattern of little illness before the cancer and now more sick days can go a long way to prove your point. Don’t rely upon your employer to provide those records, or for them to be accurate.

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