10 Tips For Organizing Your Medical Paperwork When You Have Metastatic Breast Cancer

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You’ve been diagnosed with metastatic (stage 4) breast cancer. Barring an accident or other serious health issue, you probably know that cancer is going to take your life, although you don’t know when. You’ll want to make the most of your time, prioritizing what’s most important to you. And while medical and financial paperwork is probably the last thing you want to deal with, keeping your life organized will allow you to spend more time on what you truly value: family, friends, and living.

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Having trouble getting started?

Your hospital or cancer center should be able to help. Oftentimes the organization has ready-to-go binders pre-populated with key contact information and other informational materials. If the facility has a social work team, access it; if they can’t offer direct suggestions on how to keep yourself organized on this difficult journey, they can hook you up with another institutional team that can, potentially through their breast cancer program.

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Decide what to track

Staying organized takes time, and time may be at a premium for you. Of course you want to know when your next oncology appointment is, but do you really need to keep the physical paperwork for every insurance claim (vs. accessing it online)? Here’s a tip: For every piece of paper, ask yourself: will I ever need this information again? Detailed invoice from your latest surgery, probably yes; consent form for your complimentary massage, probably no. File (or ditch) accordingly.

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What should I keep, specifically?

Generally speaking, you should file and keep the following information:

  • An updated medications list (because your health care provider will ask for it at every appointment).
  • A record of your chemo treatments (drugs/dosage/dates/side effects you experienced).
  • Lab work results, mainly blood work.
  • Any other test results, including scans.
  • All invoices (for insurance purposes).
  • Legal paperwork (advance directive/living will, health care proxy).

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Online, binder — or both?

What’s your preferred method of organizing information? You may very well want to keep three-ring binders: one each for insurance paperwork, medical information, and legal papers. Pluses: information isn’t dependent on having a working computer; and no technological skill is needed. Minuses: it’s bulky, and not easily portable. Want to stash everything possible online? Plus: With a smartphone, all your information fits easily in your pocket. Minus: WiFi access is critical for portability.

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Tracking information online?

There’s an app for that! CareZone, available in both app and desktop versions, is an all-purpose health care organization tool with thousands of positive reviews. It offers sections for contact info, medication list, an appointment calendar, to-dos, notes, personal journaling, and the ability to upload files and photos. Favorite app feature: Scanning your pill bottle automatically uploads its complete information to your medications list!

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The patient portal

Most hospitals these days offer access to all kinds of medical information via a “patient portal” — basically, your own personal website that includes your complete medical history, medications list, upcoming appointments, your lab and test results, visit summaries, downloads of digital scans, even the ability to schedule and cancel appointments. Even if you’re not tech-savvy, you should be able to handle a patient portal; they’re usually simple and intuitive.

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Find an appointment buddy

This friend or family member should have it together organizationally, and be brave enough to deal with potentially tough emotional challenges. Ask her to come with you to your regular doctor’s appointments and/or chemo treatments. You’re going to be continually presented with new information; it’s awfully difficult to process everything the doctor says while you’re still trying to deal with the fact that you have stage 4 cancer. A friend can take notes (or tape-record your appointment), then help you make sense of everything later on.

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Prepare for doctor’s appointments

Oncologists are busy, and oftentimes your appointment seems too short to cover everything you’ve been worried about. The solution? Between appointments, keep a running list of questions/concerns. Whether it’s a twinge in your ribs or an unexpected side effect from the newest chemo, you’ll have a more efficient, effective appointment if you go into it prepared. Arming yourself with a list of topics allows you to control what little time you have with the doctor.

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Legally speaking

At some point you may no longer be able to direct your own treatment. It’s important to have two sets of paperwork completed and kept up-to-date:

  • An advance care directive (and living will, for terminally ill patients): a set of decisions around medical treatment, including feeding and resuscitation.
  • Health care proxy (or agent, or surrogate); or durable medical power of attorney: naming the person who will determine your course of treatment if/when you’re unable to.

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Find time to de-stress

As a stage 4 survivor, you’re under a lot of stress. Between ongoing treatment and where it almost inevitably ends, you’re probably in the most difficult situation of your life. Leave yourself enough downtime to relieve stress; whether you’re binge-watching Netflix with a friend or meditating, stress relief is key to your health right now. Keeping the everyday parts of your life well-organized will yield you extra time — to breathe, and relax, and (literally) smell the roses.