Staying Organized With a Medical Binder
Editor's Note: This article was written by Brittney Tellekamp and originally appeared on our partner site BladderCancer.net.
When I was diagnosed with cancer, I suddenly found myself in charge of tracking, packing, and keeping so many different things with me at all times – extra supplies, various contact cards for members of my medical team, a detailed appointment calendar. And I had to somehow try to mentally store all the information about my diagnosis, procedures, and treatment.
It is a monumental mental and physical load trying to keep the various facets of cancer life organized. Although there are still days I feel completely overwhelmed, there is one thing I have done to make things much easier. I created a cancer medical binder.
Medical binders can reduce mental fatigue
Medical binders are fairly prevalent in the cancer community. Each person has a unique way of organizing and utilizing their binder. But we can all agree it solves a good chunk of the mental fatigue that comes with remembering all the things necessary when navigating:
- Appointments
- Procedures
- Treatments
I would like to share a little peek into:
- How I have set up my medical binder
- How I keep it updated
- How it has become my constant companion at every doctor visit
My cancer medical binder
My binder is set up in 4 sections, all adaptable to other types of cancer as well:
Medical history and diagnosis
This section is vital if I am ever seeing a new doctor for a second opinion, if my team ever changes, or if I find myself in a hospital that has not treated me before. It briefly covers:
- Procedures
- Diagnoses
- Important information from before my cancer diagnosis
After these 3 items, I include:
- My actual pathology report
- Diagnosis documentation
- The summary page of my genetic test
These are the things most doctors would want to ask me or request from my main team if I am a brand-new patient to them. Having this information on hand takes the burden off of me having to remember so many very important details.
Procedures since diagnosis
My next section is a concise list of all procedures I have had since being diagnosed. This section is important for my safety so that unnecessary tests or procedures are not ordered. It includes surgical notes, dates of scans, and any other minor procedures.
Medical reports
This is probably the most important part of my binder besides my diagnosis information.
I have the reports from each imaging test and scan I've had. I am constantly updating this section. In an emergency, this lets a doctor see at a glance the track of my cancer treatment and organ functions. The reports also allow a doctor to request image discs quickly.
More recent lab workups
My final section is more of a personalized place where I keep my most recent 2 lab workups. Not everyone will need this section, but for me, it is vital.
If I need an emergency scan, having my most recent blood work allows the radiologist to forgo the need to draw labs before doing the scan. My labs also give any oncologist a reference point of what my lab work usually looks like. This can be helpful because most cancer patients don't have "normal" lab results. So if my white cell count or creatine is way out of my normal range, it raises alarms.
Some additional medical binder considerations
The most important part of any cancer medical binder is your cover sheet. Especially if you are like me and have a complicated diagnosis.
My cover sheet has my full name, address, date of birth, and gender. I then have my health insurance information and 2 emergency contacts. The rest of the page states my diagnosis and lists my major surgeries with the dates they were performed. I note ways my body differs from the "norm" and current treatment plan (in my case, immunotherapy).
I have my blood type listed with the date of the last transfusion and note the location of my port. I provide a list of all allergies. Finally, I note my oncologist's name and number, the number for my cancer center, and my preferred hospital.
Keeping a cancer medical binder
The idea behind having a comprehensive medical binder is that it speaks for me. If I am ever incapacitated or unable to communicate, my binder can be given to a medical team and they will at least have a starting point.
Outwardly I do not look like a cancer patient. In an emergency, I want whoever is treating me to have the most pertinent information immediately available. That's especially true if I'm not at my home hospital.
Protect your health, ease the burden
Having a medical binder created and up to date really becomes a way for cancer patients to protect their health and ease the burden of family members or caregivers trying to remember everything. I highly encourage everyone to put together a medical binder and organize it in a way that fits their diagnosis and lifestyle. Extra points if you also keep a digital version that can be accessed anywhere!
Do you have a cancer medical binder? Tell us about your experience in the comments below, or share your story with the community.
Join the conversation