Now that my treatment is over, what paperwork do I need to keep?

Fatima Zelada-Arenas, senior director of patient services at Pancreatic Cancer Action Network in Los Angeles

When you’ve had a cancer diagnosis and completed treatment, keeping your essential medical records organized and available to you is always a good idea. Having them on hand is helpful if you wish to see if you are eligible for a clinical trial, if your primary care doctor has questions about your medical history, or if you have a cancer recurrence and require additional treatment.

Some important paperwork will date back to when your doctors were making your diagnosis. You should keep any lab results, such as blood tests, and images. Also hold on to records that detail the cancer type and stage. Keep any files you have about the treatments you received, along with the names and phone numbers of your oncologist and other clinicians involved in your care. It’s OK to throw out normal test results or those unrelated to your cancer, as well as files that are no longer accurate or not relevant to your long-term health. 

Some institutions will make all your records readily available to you. You might have access to all your test results and even notes that your physician took during your visits. At other centers, you may need to request the information from your doctor or from your provider’s medical records department. Providers are legally required to assist you in getting your files in a timely manner. Certain types of test results are rarely provided without a special request, such as biomarker test results obtained for the purpose of understanding your cancer and treatment options. Oftentimes, an outside laboratory does these tests, and you may not automatically receive copies of the full results.

When I started this work 15 years ago, patients often received this information in paper form. Now, we’ve seen a shift to more digital information and files available via online portals. Make sure you know how to access your records, and consider printing out hard copies or saving accessible digital copies so you have them all handy in one place. Also, think about how to ensure your caregivers or family members can access these essential files if something should happen to you.

In addition to records from your oncologist, keep your own notes. For example, we often recommend during treatment that patients keep track of symptoms and side effects. In the event of a cancer recurrence and additional treatment, having all this history readily available can be invaluable to your care team.

Keeping Your Cancer Records // Cleveland Clinic offers tips on how to stay organized during cancer treatment and avoid having to search for paperwork later. // Mayo Clinic explains what information to keep in a complete record of your cancer history.

The expert’s response was edited for clarity and based on an interview with Kendall K. Morgan.