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When I was in breast cancer treatment, one of the things that surprised me was the staggering amount of information I had to process and keep track of. I needed to remember dozens of appointment dates, my countless questions for the doctors, my test results, and my doctor contact information among 1,000 other things.
Coordinating all this info was tricky.
When my best friend came to visit shortly after I started treatment, she brought with her a hand-made cancer binder. It was set up with places for me to put all the information I was receiving.
Over the course of many months of treatment, I refined the binder to include everything I needed. Here are the tools you’ll need to make a cancer binder for yourself or someone you love.
(If you want to download my You Can Cancer Planner printable pages to fill the binder, click here.)
Cancer Binder Shopping List
A three-ring binder
A 1.5” binder should be sufficient to start. Any larger, and you’ll dread taking it with you to appointments.
If the binder starts to get full, bulky information can be summarized in a log sheet and then stored in a filing cabinet or scanned and stored digitally. I kept folders on my computer with the same names as my binder divider tabs so I could quickly look up any information I’d scanned. To learn more about how I organize my digital medical records, you can skip to the end of the post.
You’ll want dividers to help keep your information organized. How should you divide up the sections? Keep reading for some ideas of sections you might want to include.
These dividers have tabs that can be written on in pencil and later erased if your needs change:
- Calendar: you can have a printed calendar in here on which to record appointments as well as a rough schedule/outline of proposed treatments.
- Test results: here, you can store the results of your labs, scans, and biopsies so that you can easily share the information with new doctors and remain clear and informed yourself about the progress you’re making in treatment.
- Doctor instructions: here you can save educational information from your doctors such as chemotherapy education materials and post-surgical instructions
- Medications: you will be asked frequently what medications you’re taking, and you’ll need to start or stop certain ones depending on where you are in treatment. Record the medicine, dates you took it, and dosage. Vitamins and supplements should be included on this list, too. My You Can Cancer Planner includes a printable template for this.
Breast Cancer Treatment is Overwhelming
Organizing all of your appointments and medical information shouldn’t be.
- Medical History: take the time to write out your medical history. Include in your history any relatives who have had cancer, noting what kind they had, the age they were at death, and their cause of death.
- Gifts and cards received: you’ll likely be receiving food, gifts, cards, etc. from well-wishers. You can log these gifts here. This list can brighten your day when you’re feeling down and make writing thank you notes a breeze when you have the energy.
You might even consider keeping a few note cards with stamps in a page protector in this section to write a quick note while in a waiting room or chemo chair.
You’ll want some of these sheet protectors to hold special papers (like certificates you are given for completing chemo or radiation or extra-special notes of encouragement). You’ll also find them useful for holding envelopes, lab orders, prescriptions from your doctor, etc. that can’t be hole-punched.
Business card pages
Business card pages will be incredibly handy. You will visit many offices over the course of your treatment. As you leave a facility, grab a business card and write a quick note with the date and why you visited them.
When you need to schedule a follow up PET Scan, call to ask for medical records to be transferred to a new provider, or recommend your excellent breast surgeon to a friend, you’ll have all the info in one place. Your business card holder is also a handy place to store those appointment reminder cards that you get.
Even though we live in the age of Dropbox, you still might find CD holder pages useful.
When you have imaging (CT, MRI, ultrasound, PET Scan, etc.) done, you can ask to have a CD copy burned for your records. These are handy to have when consulting with new doctors or comparing old test results against new ones.
Sticky notes are always handy to make a temporary note of an appointment date, phone number to call, or quick question for a nurse.
INSTRUCTIONS FOR MAKING YOUR CANCER BINDER DIGITAL
My life is almost entirely paperless. I no longer keep a paper filing cabinet or any paper resources. During my recent reconstruction surgeries, I still received tons of paper from the doctors, though. Although you’ll be getting loads of paper from your doctors, too, there is no reason that you can’t digitally organize all the paper in your cancer binder to keep it long-term.
To scan the physical papers
Scan your physical papers
First, you’ll need a great scanning app for translating all of your photocopies into PDFs. I really like Genius Scan, which is an app available for both iOS and Android. It uses your device’s camera to take a picture of your document. You can then convert it to PDF and save it in cloud storage.
Organize the Information
Now, you’ll need a system for organizing all of your information in the cloud. I like to organize the information both by broad categories and by date.
Broad Categories include things like “Test Results” and “Doctor Instructions” as outlined in the binder instructions above. I also have folders for insurance paperwork and doctor bills.
Within those folders, I have yearly folders. I name documents very specifically to aid me in searching for them later: “Hormone Test 11-12-15” or “Plastic Surgery Discharge Instructions 7-24-19”, for instance. That makes information easy to find when I want to look at again.
Will you need to look at all this health information again? Probably. I’m more than five years out from treatment, and I have referenced my old information during insurance disputes, when wondering about a long-term side effect, or when looking up doctor information for a recently-diagnosed friend.
If you or someone you love has been diagnosed with cancer, I hope you found these instructions for making a cancer binder and saving the information digitally helpful.
If you want to make your binder even more functional, consider adding a copy of my You Can Cancer Planner inside.
Fellow cancer patients, I’m sending you a big old hug from a sister survivor.
You got this.
Got more time to read?
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