My Bladder Cancer Medical Binder
When I was diagnosed with bladder cancer I suddenly found myself in charge of tracking, packing, and keeping so many different things with me at all times. Extra ostomy supplies, my port ID card, various contact cards for members of my medical team, a detailed appointment calendar, and somehow try to mentally store all the information about my diagnosis, procedures, and treatment.
It is a monumental mental and physical load to try and 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 bladder cancer medical binder.
A normal thing in the cancer community
Medical binders are fairly prevalent in the cancer community, especially amongst long haulers. 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, and more. I would like to share a little peek into how I have set up my medical binder, how I keep it updated, and how it has become my constant companion at every doctor visit.
My bladder cancer medical binder
My binder is set up in 4 sections, all adaptable to other conditions as well.
- Medical history and diagnosis
And most importantly on the cover a quick facts sheet for emergencies (which I will cover at the end).
Medical history and diagnosis
This section briefly covers any procedures, diagnoses, and important pre-cancer-diagnosis information. This is followed by my actual pathology report, diagnosis documentation, and the summary page of my genetic test.
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. These are the things most medical providers 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 includes the surgical notes from my radical cystectomy which has very important details of my complex surgery. All dates of nephrostomy placements and removals, my kidney nuclear scan, and any other minor procedures. This section is important for my safety so that unnecessary tests or procedures are not ordered and so no one tries to catheterize my non-existent bladder.
My section that includes all reports is probably the most important part of my binder besides my diagnosis information.
I have the reports from each CT scan, nuclear scan, and MRI I've had. I am constantly updating this section. In an emergency this lets a medical provider see at a glance the track of my disease treatment and kidney function. The reports also allow a provider 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 because of my stage 2 kidney disease.
If I need an emergent scan, having my most recent bloodwork allows the radiologist to forgo the need to draw labs before doing the scan. My labs also give any nephrologist or 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, and 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 two emergency contacts. The rest of the page states my diagnosis, that I have had a radical cystectomy and hysterectomy, both with the date of surgery. As well as additional details like my ileal conduit, and I am being currently treated with 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 and finally, I note my oncologist's name and number, the number for my cancer center, and my preferred hospital.
Keeping a bladder 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. I often experience the need to explain that a pregnancy test is not needed, I can't give a urine sample, or I only have one kidney. In an emergency, I want whoever is treating me to have the most pertinent information immediately available, especially if I find myself 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 bladder cancer medical binder? Tell us about your experience in the comments below, or share your story with the community.
Have your views towards bladder removal changed since you were diagnosed?