The short answer
Keeping records of your tests, treatments, and medicines helps you and your care team. You can use a folder, notebook, calendar, or app — whatever you will actually use. A personal health record lets you store key details in one place, and a hospital social worker can help you set up a system.
Keeping records of your care helps you and your care team make decisions.
Write down visits, tests, treatments, side effects, and medicines, with dates.
Use whatever system you will actually use — folder, notebook, calendar, or app.
A personal health record (PHR) keeps your key details in one place you control.
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The full explanation.
The simple version
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 and 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.
What is worth writing down
The National Cancer Institute suggests keeping copies of treatment plans and results, and 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 take photos and save them on your computer.
Pick a system that works for you
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 organize and remind you
You can also ask if you may record talks with your doctor, so you can listen fully during the conversation and check the details later.
It is not which tool you choose that matters, but that you use one you will stick with.
A personal health record
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, except you are the one who controls it and decides who sees it.
One page to keep handy
It helps to keep a single sheet with key information for yourself and others, including:
- 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
Be ready for an emergency
Being prepared for a natural disaster or other emergency matters for everyone, but even more for people with cancer, whose care could be disrupted. Keeping your key records together and easy to grab is part of being ready. 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.
Bring your notebook to every visit
A simple notebook or journal can be one of your most useful tools. Write down details about side effects, along with questions to ask your doctor, and bring it to each visit so you can take notes and look back later. You can also ask whether you may record your conversations with your doctor using a recorder or phone — this frees you to listen closely, knowing you will not miss anything.
Use electronic tools when they help
Some providers, insurers, and employers offer online tools to manage your information. Apps on your phone or computer can help you remember appointments and organize records, and the government's HealthIT.gov site has guidance on using digital tools to manage your health information. Choose whatever feels right to you — the goal is simply to keep everything in one place and easy to find.
A note before we begin
This information is educational and is not a substitute for medical advice. For your own care, talk with your care team or a hospital social worker.
Reviewed sources
This article is based on public information from the National Cancer Institute:
Words to know
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Common questions
▸What records should I keep during cancer treatment?
Helpful items include copies of treatment plans and results, dates of visits, tests and procedures with dates and results, treatments with dates, side effects and symptoms with dates, any medicines prescribed, and other supportive care you received.
▸What is a personal health record?
A personal health record (PHR) is a tool that lets you enter, manage, and track your medical information. It is like the electronic record your doctor keeps, except you control it and decide who sees it.
▸Do I need a special app or system?
No. The National Cancer Institute says it is not important which system you choose, only that you use something to keep everything organized and easy to find. A notebook, calendar, folder, or app can all work.
▸Why keep a page of key information handy?
In an emergency, it helps for you and others to have your care team's contacts, your diagnosis, your treatment plan, and any serious side effects to watch for all in one place.
Questions to ask your doctor
Being prepared helps you get the most out of your appointments. Save or print these questions.
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Your next step
Your care team's answer depends on your treatment — ask them directly.
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