as large as yours and probably not the same type, so your experience will be different. May I make a few suggestions that helped me as I went through this very scary process?
1. Today, start an Excel spreadsheet on your computer for every (and I mean every) doctor visit, hospital visit, test procedure, flu shot, etc., to include the date, doctor type, doctor name, purpose of visit, site of visit, and results. Right now, enter in your CT scans and needle biopsy dates. As you must have noticed already, you will be overwhelmed with a wash of strong feelings, worry, fear, etc. You will not be able to remember things unless you go right home and write them into your spreadsheet. A year from now, one of your docs will ask you when you last had a Dexascan/breast MRI/flu shot/pneumonia shot, etc., and you will not know unless you have your spreadsheet with you. Despite all the new electronic medical records, you'd be surprised how rarely different docs and hospitals share info on the same patient. It saved me a lot of aggravation.
2. As someone else suggested, take a very organized friend with you for the first few months so he/she can do the notetaking, etc. You will miss things because your mind will be whirling around.
3. When you get a firm diagnosis, get a page describing exactly what you have and keep it handy in a folder. All your docs will want to see this. You will have many docs -- oncologist, radiologist, surgeon, etc., and they don't often coordinate very well with each other.
4. Get a sturdy folder in a bright color (you don't want to lose it!) and carry it around to every appointment without fail. In this folder, keep an updated list of all your meds; a list of all your docs and their addresses and phone #s, including your GP, gyno, etc.; that diagnosis page; a blank piece of paper to write notes on; and the latest copy of the Excel spreadsheet you will make today. You cannot imagine the millions of times you will refer to this spreadsheet -- it saved my sanity.
5. Keep every communication with the insurance company, docs, etc., in a file folder in date order in your file cabinet. Make it a habit to file them immediately. One of my docs retired suddenly, went off in a huff without arranging for his patients' files to be transferred, and the only way I could find some of it was to look at my insurance bills.
I'm so sorry you're going through this. Try not to panic (hard to do!). If you want to PM me, feel free to do so.
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