How to Be an Organized Cancer Patient

When you receive a cancer diagnosis, the last thing on your mind is organization. I know because I’ve been there. But believe me, it pays to be an organized cancer patient. Having the administrative side of your medical care under control will put you in a better position to advocate for your health and your finances. This is something that a caregiver can help with. As a matter of fact, my husband, who was my primary caregiver, developed many of the ideas I share with you here.

Google Calendar allowed my husband and me to create separate calendars but choose which ones we wanted to share. I used one calendar for medical appointments, one for our kids’ activities, and one for work. My husband and I shared the medical and kids’ calendar, which means we could both view and edit them. This was tremendously helpful because he attended all of my doctor’s visits, so it was important that he have an updated copy of my schedule. Also, I became very forgetful. Sharing the kids’ calendar allowed him to ensure I hadn’t overlooked anything related to their academic deadlines or extracurricular activities.

The great thing about Google Calendar is that you can integrate it with other calendars so you view everything in one place. You don’t have to jump from one calendar to another. Also, you can access it from your smartphone, so you can enter appointments as you schedule them. This has proven to be a great way to organize our family life in general. I no longer have frequent medical appointments, but we continue to use our calendars to coordinate our schedules.

Make a list of the medications your doctors have prescribed, and carry it with you. Be sure to list the medicine name, dosage, and how often you take it. You will need it whenever you visit a new doctor or if you have to go to the Emergency Room. They will want to know what medications you are currently taking, and it will be hard to remember if your list is long. Include any drugs that you only take as needed (i.e. for nausea or pain), drugs that are administered through infusions (i.e. chemotherapy or Herceptin), and supplements such as multi-vitamins.

From diagnosis, throughout treatment, and during follow up care, it is important to store copies of all your medical reports and images. You will receive reports after procedures such as PET/CT scans, ultrasounds, MRIs, mammograms, and biopsies. You may receive copies of images on disc or film. Keep them all. Not only will you need to present them at some of your doctor’s visits during treatment, but you might need them in the future as well. If you request a second opinion, the doctor reviewing your case will also want copies of your medical records.

The paperwork accumulates quickly, so a file folder will not be large enough to hold all of your documents. Instead, I used an expandable file similar to this one. You can probably find a prettier one. Just make sure you get one with a handle and a clasp or band that keeps it closed. Also, make sure it is large enough to house all of your documents. You could use a 3-ring binder with dividers, but I prefer the expandable file because I don’t have to hole punch anything.

I carried this file with me to every appointment. My doctors were grateful that I was prepared and able to provide copies of test results they didn’t have. I also included research articles about my type of cancer and treatment options in my portable file. Having these on hand helped me ask informed questions.

In addition to hard copies of all my medical reports, I also scanned each document as I received it. My husband installed an app called Genius Scan on my phone, and I used it to snap pictures of the documents. It automatically converts it to a PDF that you can store electronically. It is a free app and you can get it for both Android and Apple devices.

Just as you will have lots of medical appointments, you will have lots of medical bills. Billing errors are bound to occur. While providers will contact you repeatedly to collect any money you owe them, they rarely contact you to issue a refund when you overpay. Because I tracked all of my expenses, I’ve been able to recover over $200 that I overpaid in medical bills. It takes a bit of discipline, but here’s how you can do it:

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