After a breast cancer diagnosis, expect tons of paperwork. We’re talking everything from doctors’ reports to prescriptions and medical bills to insurance info.
But you can keep everything organized and within reach.
First Things First
One document you’ll want to have handy is a paper copy of your biopsy or pathology report, says Julie Schreiber, an oncology patient navigation supervisor at Northside Hospital Cancer Institute in Atlanta.
“It’s important for their future records and understanding of their diagnosis to have that paper in front of them to say, ‘OK, I see exactly what my diagnosis is right here. And I’ve got the words to identify what particular type of cancer I have.’ That’s huge.”
Some insurance companies may require proof of diagnosis before they start a claim.
What to Keep
You can pull together some records on your own or ask your doctor or hospital for copies. Think about what you — or caregivers — could need in the future, like:
Images: Mammograms, ultrasounds, MRIs, PET/CAT scans, and X-rays on a disc or flash drive
Pathology records: Lab reports from when a doctor removes cells or tissue
Surgery records: Surgery date, where the surgery was done, surgeon’s name and contact info, and post-surgery summaries and reports
Treatment records: Type of treatment (chemo, radiation, etc.), where the treatment was done, doctor, dates received, dose, and side effects
Medicines: Drug name (generic and name brand), what the medicine is for, date prescribed, dose, doctor who prescribed it, directions, and side effects
Medical bills: Bills and proof of payment for each health care provider
Personal information: Family doctor, health insurance, emergency contacts, a list of your regular medicines, vitamins/supplements, allergies, vaccines, blood type, current and past addresses, birthday, living will, and medical power of attorney
Digital or Paper?
When it comes to organizing all this, “Some people are paper people and others are mainly digital people,” Schreiber says. If possible, keep both physical and digital copies.
You have choices for digital storage. You can use your personal computer. Or use flash drives, external hard drives, and cloud storage, so you can take records with you.
Mobile technology also can help. Groups like the American Society of Clinical Oncology, Apple Health, and CarePassport have apps that log:
- Doctors and other health care providers
- Questions for your doctors
A simple way to keep organized is a three-ring binder. Use dividers to group documents by type, like medical bills, treatment reports, and medicines. Or you could organize them by treatment phase, like diagnosis and treatment.
Also, think about creating a “cover” page for the binder. List basics like health care providers’ names, phone numbers, and how to reach them after hours. Caregivers can quickly find information when they need it.
Once you’ve finished your treatment, Schreiber says putting away a physical binder can be a symbolic way to close a chapter on cancer. “It’s like you’re setting down the burden of cancer treatment.”
Remember, They’re Your Medical Records
You’re entitled to see your health information, thanks to the Health Insurance Portability and Accountability Act (HIPAA) law. Doctors, insurance companies, labs, and pharmacies must let you see your health records and get copies.
The best way to make sure you have your records is to ask for them during treatment. You’ll likely get them for free.
“It’s important that patients know they are responsible for their medical records,” Schreiber says. “Hospitals only keep records for a certain number of years. If 20 years from now, you need a copy of your pathology report, you may not be able to get it.”
Laws differ from state to state, but health care providers can generally get rid of patient health information after 10 years.