Do not take this first piece of advice too lightly:
I don't care how calm or prepared you are this is going to be an appointment from hell. It will hurt, it will be emotional, it will be long. I would advise just never going to an appointment alone again in general, because you just never know how you are going to feel about stuff afterwards, but this one is definitely not for going alone. I know. I did. Take someone that you aren't afraid to be emotional in front of and let that support system work for you.
Your surgeon should have written instructions and information about this appointment in the notebook I advised you to take to your results appointment. This is good information to keep track of, but just in case, here is what you can probably expect at your first appointment:
1) Forms. Get used to it. There is always another form to fill out. Insurance information is a necessity to take to this appointment.
2) You will meet your doctor and talk briefly about your condition before taking the long family history information. The doctor will probably do this interview. Be prepared with everything that has ever gone wrong in your immediate family or yourself. This includes your wisdom teeth removal, tonsils, history of diabetes, cancer, asthma, etc. It was the most thorough family history I've ever been asked to give.
3) You will have blood taken. Lots of it. Probably 5 or 6 vials. Nothing painful or to be scared of, but it's probably more than you've ever given at once before.
4) You will undress completely and be given a very extensive exam. This will include humiliating and embarrassing things like female pelvic and breast exams, rectal exams, etc. It will include general eyes, ears, nose throat, it will include breathing. They'll check all your lymph nodes and your spleen. They will also do an EKG or similar test to track your heart for future comparisons. This is painless, and actually somewhat interesting.
5) This is the painful part. They will take bone marrow. It was the most excruciating thing I've ever done in my life. There is no way I can describe it to do the test justice. They took from both hips. Then I drove 90 minutes. This is a reason all by itself to take someone with you to the appointment. You will survive this. Once the pain hits it goes away very quickly, but you need to mentally prepare yourself for this test.
6) You'll get dressed and talk to your doctor one more time. You may discuss treatment or staging options. Staging can include surgeries, scans, this exam, etc. Everyone is a little different in how they are staged. I had a gallium scan. It was painless but it took time out of 5 straight days to do. Your doctor will also give you some pamphlets to read about your disease and treatment. Take them. They have great info.
7) Ask those questions. Remember, no question is ever a dumb question.
8) Go home and celebrate your first appointment being over. Have dinner with friends or family and eat whatever your like. You deserve it.
Copyright 1996, 1997. Last updated March 23, 1996.