Swamped by Breast Cancer Paperwork?

Written by Alyson Powell Key
Medically Reviewed by Melinda Ratini, MS, DO on September 12, 2025
6 min read

After your breast cancer diagnosis, you may expect tons of paperwork. We're talking everything from doctors' reports to prescriptions and medical bills to insurance info.

"The paperwork felt like a second diagnosis," says Sahar Paz, a patient advocate and two-time breast cancer survivor. 

"It was just as overwhelming as the medical part," she says. "I was trying to focus on healing, but I was buried under test results, and insurance paperwork, and all these forms."

But despite all the paperwork, there are some ways to keep it organized and within reach.

You can pull together some health records on your own, or ask your doctor or your hospital's medical records department for copies.

Think about what you or your caregivers may need in the future. You may include your:

  • 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
  • Contact information. Names and phone numbers of your oncologist and other professionals on your health care team, including your family doctor
  • Other health information. Medicines (prescription and over-the-counter), allergies, vaccines, blood type, routine test results (cholesterol, blood sugar, blood pressure), eye and dental exam records, other serious illnesses, and organ donation status

Medical insurance can help cover the cost of a serious illness like breast cancer. Here's some of the paperwork you'll want to gather from your health insurance company and doctors:

  • Medical bills. Bills and proof of payment for each health care provider
  • Letters. Any letters to or from your health insurance company
  • Notes. These can be recaps of calls to your health insurance company that include when you talked to them and to whom
  • Policies. Insurance policies and other insurance records
  • Reimbursement requests. Paperwork from your health insurance company related to refunds for eligible medical expenses you've paid
  • Claims paperwork. Letters of medical necessity from your doctor, explanations of benefits (EOBs), bills, receipts, requests for sick or family medical leave, and prescriptions

Review each medical bill carefully to make sure it's correct. If something looks off, contact your insurance provider to request a breakdown of each charge. You can then challenge any incorrect charges. Be sure to submit reimbursement requests right away since there's usually a deadline, for example, 90 days after you received the service.

Paying for costs not covered by medical insurance is one of the most important aspects of cancer treatment. Plus, your loved ones should know where to find certain documents. 

Make sure your financial paperwork includes your:

  • Monthly budget. Track your monthly expenses and income during treatment.
  • Net worth. Create a list of what you own (including home equity, savings, pensions, and investments) and what you owe (debt) in case you need extra sources of money.
  • Tax information and tax-deductible expense receipts. Keep your recent tax return, along with your receipts for travel, meal, and lodging expenses during your treatment.
  • Bank information. Keep a list of your bank names and account numbers (checking, savings, and credit unions).
  • Credit card information. Keep track of your account names and numbers.
  • Car title and registration. Keep this information in a safe place.

Legal and personal documents keep you and your family organized and clarify how your assets and medical needs should be managed. Here's a look at the paperwork you may need:

Personal paperwork 

Put together a list of personal information that includes your:

  • Legal name
  • Address
  • Social security number
  • Date of birth
  • Place of birth
  • Names of spouse and children
  • Location of your certificates and records (birth, death, marriage, divorce, citizenship, adoption, education, and military)
  • Employer information
  • Contacts (your close friends and relatives, lawyer, financial planner)
  • Driver's license or other ID
  • Funeral arrangements

Legal documents 

Legal paperwork you'll need during your cancer journey includes:

Advance directive or living will. This is a written or spoken statement about your future treatment choices if you're no longer able to make decisions.

Do-not-resuscitate order (DNR). This order tells your doctor that you don't want the help of machines to stay alive.

Last will and testament. This document outlines what happens to your minor-age children, property, money, and other possessions after your death.

Medical power of attorney (POA). This document appoints a trusted person to make medical decisions on your behalf if you're unable to do so.

You'll complete some of these documents with the help of a lawyer. Others, like an advance directive, you can complete on your own or with your loved ones. Be sure to give copies of this paperwork to the person in charge of your affairs (power of attorney) and your health care team.

If you've decided to keep working, need accommodations at work, or plan to take leave during treatment for breast cancer, talk to your employer to get or submit paperwork on:

  • Health insurance
  • Disability (short-term and long-term)
  • Retirement benefits (if you need to borrow from your plan)
  • Earned sick and vacation time
  • Family and Medical Leave Act (FMLA). This law allows eligible employees to take up to 12 weeks of unpaid leave every 12 months for medical reasons.
  • Workplace accommodations (adjustments or modifications that allow you to keep working)

Other paperwork related to:

  • State family and medical leave or temporary disability
  • Americans with Disabilities Act

Contact your state's labor office or the Equal Employment Opportunity Commission (EEOC) for more information.

When organizing information related to breast cancer, it's best to keep both physical and digital copies, if possible.

Physical storage

You may choose to organize physical documents by category. During her cancer treatment, Paz carried an accordion-style file folder to appointments. "It had those tabs where one was test results, one was for insurance claims, and one was for informational paperwork that they give you." By the end of her cancer treatment, she had four folders.

You can also organize documents by treatment phase, such as diagnosis and treatment. Also, think about creating a cover page for the binder. List basics such as health care providers' names, phone numbers, and how to reach them after hours. This will help caregivers quickly find the information.

Digital storage

You have choices for digital storage. You can scan documents and save them to your personal computer. Or save them to flash drives, external hard drives, and cloud storage, so you can take records with you.

Mobile technology can also help with apps that log:

  • Medicines
  • Doctors and other health care providers
  • Appointments
  • Questions for your doctors

Be sure to read an app's privacy policy before you download. Find out if the company behind the app will get your permission before using, selling, or sharing your health information.

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 your treatment. You'll likely get them for free.

Don't delay.

It's important to understand that you're responsible for your medical records. Hospitals only keep records for a certain number of years, and if you need a copy beyond that time, you may not be able to get it.