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Organizing Cancer Documents

EOB's, referrals, test results, appointments, insurance claims, and the list goes on. I have been organizing my cancer documents for almost 9 years. When I was first diagnosed the papers just piled up because I was dealing with just the mind boggle of having a cancer diagnosis and then finding out that it was stage IV. (add more confetti to the mind boggle) When finally the paper trail and stacks got taller than I wanted, I bought a binder. The binder has been my friend, it works for me, and I hope it might work for you too.

At first, I bought the boring plain white ones, however, I decided that I needed to have binders that sparked some joy. So I started buying ones with patterns that made me feel good. It's the little things, right? I mean, if we have to live with MBC, then organizing paperwork should have a silver lining and pretty things make me happy. (Remember buying school supplies?). You can find nice ones at Target and on Amazon for a decent price.

Then it is just all about getting dividers and figuring out how you want to organize the mass amounts of paper.

These are my basic tabs - Referrals and Approvals, Labs, Scan results, Medical Bills, EOB's, Other.

Here is how I address and manage each divider.

  1. Referrals and Approvals. Depending on the type of insurance you have, you might not have referrals. However for me, I might have them or I might not, depending on what Medicare Advantage Plan I have chosen for the year. For example: When I was NEaD for 5 years, my medicare advantage plan was an HMO, because I was just in a place of maintenance but once I progressed, I chose a PPO. With each referral, I attached the matching approval. If there was no referral, I still need approval for my treatment and when I get that in the mail, I will put that under that divider.

  2. Labs. I have my labs done every month. While, we now can access our medical records via our online health charts, I always like a hard copy. So I either ask the medical assistant to print it out for me, or I print it out at home. I also put these in chronological order and highlight results that I want to keep my eye out on each month.

  3. Scan results. When I was getting PET CT's, I always waited for a copy of the CD. I added in a couple of sleeves to hold these CD's, and then I would add in the printed results. For the past 3 years, my oncologist has recommended only CT's and Bone Scans. I guess I could ask for the films but I have not. I just want the findings. So all of these results go into the binder, again in chronological order and I highlight findings to compare one month to the other.

  4. Medical Bills and EOB's - This will be the fattest part of your binder. I never pay a bill until I get my EOB (explanation of benefits). When I get a bill, I wait till my insurance sends me the corresponding EOB and what they have paid on the claim. If it does not match up, then I have the documentation to talk to the billing department of my oncology office. I always match up my EOBs and bills by chronological order and make notes on what Medicare has paid and what my oncology office and hospital has billed.

  5. OTHER- There are always the extra paper work that you are not sure if you should keep it or throw it away. I always err on the side of caution. I keep it and save it here. I also include notes that I may have written on conversations, appointments, etc. I SAVE EVERYTHING.

I do not have binders for the 9 years that I have lived with MBC. During my years of being NEad, I found that I could take everything after that year and put it into a large manila envelope and just mark it with the year. Once I started to progress again, I have found that each year needs its each binder. Why? Because progression means more paper, more bills, more results.

We have to find our own way of organizing the barrage of paperwork coming our way.

Here are a few other tips.

Create a folder on your computer for just your cancer documents. Save everything to this folder and then spend a couple hours a month going through it.

In this cancer folder create two documents: 1. Surgeries 2. medication. Update these documents as your medications and surgeries change. This helps when you have to go see a new doctor, and they ask you to fill out their paperwork . I just print it out and attach it to my new patient intake.

Finally, If you go to a new doctor and they send you the forms to be filled out. Fill them out and send them back to them. Let them print them out and attach to your file.

I hope I have helped you take a look at that pile of paper that accumulates while dealing with MBC. It is just one more thing. I take one day week, if I can to organize my documents. But sometimes, I can only do it once a month. You have to make it work for you.

If you want to learn more about how to do this or how to read your EOBS. Please email me Lesley@projectlifembc\

Live well. Grow Together

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