Keeping Track of Your Cancer Medical Records

This page is for anyone in cancer care, and the people helping them, who wants a simple way to keep track of medical records. It covers what to write down, tools that can help, and how to be ready for an emergency.

Keeping records of your medicines, tests and treatments is one of the most useful things you can do during cancer care. It can feel like a lot at first. But a simple system, started early, makes appointments smoother. It also helps you and your care team make good decisions. There is no single right way to do it. The best system is the one you will actually use.

The National Cancer Institute suggests keeping copies of treatment plans and results. It also suggests recording:

• the dates of each medical visit
• tests and procedures received, with dates and results
• treatments received, with dates
• side effects and symptoms you have had, with dates
• any medicines prescribed
• other supportive or complementary care received

You can keep these in a file folder. Or you can take photos and save them on your computer.

Different tools suit different people. You might use:

• a notebook or journal for details, questions and notes during visits
• a calendar or daily planner just for medical information
• apps on your phone or computer to remind you of visits and organize records

A notebook is easy to bring to every visit. Write down side effects and questions for your doctor, take notes during the visit, and look back later.

You can also ask whether you may record talks with your doctor on a recorder or phone. Then you can listen fully during the talk and check the details later.

What matters is not which tool you choose. It is that you use one you will stick with.

Some doctors, insurers and employers offer a personal health record (PHR). This is a tool that lets you enter, manage and track your medical information. It is like the electronic record your doctor keeps. The difference is that you control it and you decide who sees it.

The government's HealthIT.gov site has guidance on using digital tools to manage your health information. The goal is simply to keep everything in one place and easy to find.

It helps to keep a single sheet with key information for yourself and others. Include:

• the names and contact information of your care team
• your diagnosis, such as the type and stage of your cancer
• your treatment plan from your doctor
• any serious side effects or changes in health that need urgent care

Being ready for a natural disaster or other emergency matters for everyone. It matters even more for people with cancer, whose care could be disrupted. Keep your key records together and easy to grab. A hospital social worker can share more ways to track your medical information.

A little organizing now gives you one less thing to worry about later.

This information is educational. It is not a substitute for medical advice. For your own care, talk with your care team or a hospital social worker.

This article is based on public information from the National Cancer Institute:

• NCI — Managing Cancer Costs and Medical Information