I emailed someone last weekend with this tip, which reminded me that it would be a good thing to post here. It is a simple thing, but so important.
We always tell those who are newly diagnosed to:
1) Bring someone else with you who will take notes of what the doctor is saying. Someone to be your "eyes and ears". It is WAY too much information for one person to try to process and write down all at once.
2) Get a 3 ringed looseleaf notebook to store all of your cancer related information in. It will make your life easier.
Also, please add this to "best gifts for cancer patients". Make one up for a friend, if you want to give them a useful gift.
Sections of the notebook should include:
- Plastic sleeve with slots to put all business cards in (stick this in the front of the notebook). Put all of your doctor (surgeon, medical oncologist, radiation oncologist) nurse and clinic phone numbers in here, and keep it right up front.
- Calendar of your treatment, or a timeline of events and procedures since your cancer diagnosis.
- Pathology Reports and Operation/Surgery reports
- Lab reports
- Scan/Xray reports
- List of all medications that you are on and what you take them for.
- A section to put all of the print out information on chemotherapy drugs that your nurses will give you.
- If you are on a clinical trial, keep a copy of your research consent form here.
- Financial: Keep all your receipts. Gas, parking, receipts for payments for prescriptions, co-pay receipts etc. You will be able to deduct a lot of these at tax time. Also, some assistance funds require copies of receipts (Lyphoma and Leukemia Society used to do this), so save all of your receipts!!
Ask for copies of your pathology report and your operative note (if it is ready) right when you are in the office when you see your surgical oncologist. This will save you a trip to medical records later. Every doctor that you will see along the way will want to see these reports.
Every time you go for chemo, ask for a copy of your labs. Every time your MD sits down and explains your scan results, ask for a copy of the report for your files and put it in your notebook.
Yes, they may have electronic medical records at your hospital, but if you go to another hospital anywhere along the way, if you have all of this information in one handy place, your life will be easier. You'll be needing to refer back to your notebook quite a bit.
I would make about 5 extra stacks of your pathology report, operation report, most recent scans and recent md note to have on hand in case you go for a second opinion, go for a clinical trial eval. If you have a copy of your oncologist's note, it has your cancer history on it and your current medications. This will save you from being tortured by young residents and fellows all asking the same question! Make sure to tell your MD if the medication list is not up to date, so they can reconcile this.
Don't forget a section for the financial part of things. You want to save all of your medical bills in one spot (don't forget all the "little" expenses that you incur that you may be able to write off on your taxes next year. Parking, co-payments for medicatios etc can all add up. Save all these receipts. Also, make sure to really look at the bills you get from the hospital and the insurance company. Hospitals are notorious for weird billing and goof ups on bills, especially when insurance companies are involved. You don't want to be paying for something your insurance company already paid for.