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How Do I Keep a Breast Cancer Health Notebook?

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Updated June 26, 2010

Question: How Do I Keep a Breast Cancer Health Notebook?
Coping with breast cancer treatment -- and the paperwork that goes with it -- is a part-time job. It can be overwhelming to keep up with receipts, insurance statements, invoices, test results, and your medical appointment schedule. You need a place to keep the lists of questions that you take along to appointments, as well as all those little notes you make during consultations. Keeping all these bits and pieces organized can give you a feeling of control. A health notebook is a great place to file and organize your medical information.
Answer:

Organize and Update Your Health Paperwork

Reasons to Keep a Health Notebook

During treatment for cancer, you will see many different health care professionals. Ideally, they would all work in the same place and have equal access to your healthcare records. But since the world is not an ideal place, somebody has to become "Information Central" - and you may get elected to that position!

Keeping your health records in a notebook helps you ensure that your all your doctors and therapists know the most current information about your health. A health notebook is a good way to avoid overpaying your medical bills. You can take control of your health information and protect your health - and pocketbook - at the same time. Here's some suggestions for setting up, maintaining, and using your health notebook.

Health Notebook Supplies:

  • 3 Ring Notebook with pockets and durable hinges
  • 3 Hole Paper Punch
  • 12 Tab Dividers to create sections
  • Plastic Page Protectors - top-opening
  • Calendar Pages
  • 3 Hole Ruled Paper

Set Up Your Health Notebook

Set up section dividers to help you organize and access your health information. Keep the most frequently needed papers near the front cover. Here are some suggestions for sections:

  • Contacts
  • Calendar
  • Notes & Questions
  • Biopsy
  • Surgery
  • Test Results
  • Hospital
  • Reconstruction
  • Chemotherapy
  • Radiation
  • Work Issues
  • Journal

Filing and Maintaining Your Health Information

Each section of your notebook will cover different information. In each section, add some plastic page protectors and sheets of blank notepaper. Use the page protectors to collect and sort your information by date. Here's what to file in each section.

  • Contacts: Write down the name, address, phone and fax numbers for each of your doctors or clinics. Note your emergency contacts and their critical information. Include your insurance information as well.
  • Calendar: Print out blank calendar pages and use these to track all appointments. Don't overbook yourself.
  • Questions & Notes: Write out and print two copies of any questions you have before each appointment. Give one copy to your doctor, and take notes on your own copy. Be sure to put the date and doctor's name at the top of each page.
  • Biopsy: Keep pre-operative paperwork in this section, along with a copy of your co-payment receipt, pathology results, and discharge papers.
  • Surgery: File pre-operative instructions in this section, along with a copy of your payment receipt, insurance statements, pathology results, and discharge papers. Save any home care instructions and appointment notes along with these papers. Always compare your payment receipt with your insurance statements before you write a check for additional surgical bills. It may be hard to get a reimbursement check, if you accidentally overpay.
  • Test Results: Save a copy of your blood counts, tumor marker tests, hormone tests, and imaging studies. Use these for comparison with later tests to track your progress.
  • Hospital Stays: Get several copies of your contact info sheet, and legal papers such as Do Not Resuscitate (DNR) orders, organ donation preferences, current medications list, blood type (if known), and a brief general health summary. Keep these together here - it may save you time and effort while doing admissions paperwork.
  • Reconstruction: Breast reconstruction can take many steps - save documents from each office and surgical visit. If you have drains, file the instructions here. For implants, keep manufacturer's cards on record.
  • Chemotherapy: Save copies of any forms that you sign. Keep each drug information sheet. Before and after infusions, you will have complete blood counts done - keep a copy of each report. You may have shots to boost your blood counts - those will be given at separate appointments after chemo - save the receipts. As insurance statements arrive, file those by date with each treatment or shot. Keep a record of your side effects, so you can tell your doctor and ask for help with symptoms.
  • Radiation: Save copies of any forms that you sign, as well as any treatment information sheets. File any tips on side effects and skin care that you receive, so you can refer to these later. Keep all receipts and insurance statements together by date. If you have additional tests or imaging studies, ask for copies of the reports and file those in your notebook. You have a lifetime limit of radiation exposure, so any future doctors will need to know where and how much treatment you have had.
  • Work Issues: If you applied for medical leave under the Family and Medical Leave Act or for extra leave time through your employer's Sick Leave Pool, keep a copy of all papers related to your leave. Save printed copies of Sick Leave policies, leave time reports, medical certification letters, related emails, and anything else your Human Resources office provides on medical leave. Having a complete paper trail helps clear any misunderstandings that may occur after you return to work.
  • Journal: Write down your thoughts and emotions in your journal pages. Date each entry so you can easily refer to it later. Use this space to record your progress, remember tips from a helpful nurse, note supportive friends and family, or just rant about cancer itself. Make plans for your life after breast cancer and consider new goals and dreams for yourself. Draw, scribble, or write a grocery list - do whatever helps you cope.

Uses for Your Health Notebook

Take your notebook with you to every appointment. Ask for copies of your lab tests, pathology reports, imaging studies, blood counts, drug info sheets, and self-care instructions. Keep these in order by date in each section. When you can, make copies of these to share with other doctors. Never give away your original copies. When seeking a second opinion, show your records to your consulting doctor - this can prevent conflicts and misinformation. If you move to a new place during or after treatment, having your health notebook with you helps your new doctor. Filing financial information together with bills and insurance statements can save you money - never write a check until you can verify that your insurance has already covered their share of the bill. After treatment, your health notebook serves as a record of your endurance and victory.

  1. About.com
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  3. Breast Cancer
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  5. Workplace Issues
  6. Breast Cancer Health Notebook – Keeping a Breast Cancer Health Notebook

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