Perhaps the most common question I get asked by email is, “Someone I know has been diagnosed with cancer. What can I do?” Today I offer one suggestion. I believe this would make a wonderful gift for someone who has just been diagnosed and is a necessity if you are the patient.
Being organized is one of the best ways to help yourself once you’ve been diagnosed. When you first hear the words, “You have cancer” your head starts to swim. Everything gets foggy, you have to keep convincing yourself it’s true.
But almost immediately decisions need to be made — decisions about doctors, treatments, and surgeries. Often these choices must be made under time constraints. You may be seeing many different doctors for consultations. Medical oncologists, surgical oncologists, radiation oncologists, recontructive surgeons, internists— there are many different voices that you may hear, and they may be conflicting. It’s hard to keep it all straight in the midst of the emotional news. Not only are you likely to be scared, but also you are suddenly thrust into a world with a whole new vocabulary. By the time you are done with it, you will feel you have mastered a second language.
You can help your care and treatment by being organized. Especially if you are juggling different specialists and different medical facilities, you must remember that the common factor in all of this is you. It’s your health. It’s your life. I believe it’s important to travel with a binder of information about your medical history and treatment, as well as notes and questions.
This binder will mean that all of your information about your cancer will be in one place. This will be your resource guide. I cannot tell you how many times physicians have asked about my binder and said when I was able to produce test results, pathology reports, or other information they needed, “I wish every patient had one of those.”
I suggest the following:
A heavy 3-ring binder
I think a 1.5″ binder is a good size to start. This size will allow you to easily access reports and pages and have room for the calendar. It will look big at first but you won’t believe how quickly you will fill it up.
Colored tab dividers
I like these to be erasable. I think 8 is the minimum number you will need. If you have a lot of specialists you will need more. The categories you think you will need at the outset may change. It’s easy to erase and reorganize them. Put the categories you will be accessing the most in the front so you aren’t always having to flip to the back. Once the binder is full it will make a difference.
Some starting categories:
- schedules (dates of appointments you have had, when the next ones are due, and how often you need certain tests done)
- test results/pathology (it’s very important to keep copies of MRI, CT, and pathology reports so that you correctly tell other doctors what your diagnosis is. For example, new patients often confuse “grade” with “stage” of cancer.)
- insurance (keep copies of all correspondence, denial of claims, appeal letters, explanations of benefits)
- articles and research (handouts, post-surgical information. Ask if there are any websites your doctor does approve of. My own oncologist said, “Do not read anything about cancer on the internet unless it comes from a source I’ve told you is okay. There’s a lot of misinformation out there.”) Keep your post-surgical instructions, any info given to you about aftercare.
- radiation/chemo (keep records of exactly what you had done, number of sessions, dates, drug names, etc. I also asked how my dose was calculated so I knew exactly how much of each drug I received in total)
- medications (drug names, dates you took them, dosage, side effects). I also keep a list of all of my current medications as a “note” in my iPhone. That way I can just copy it down and won’t forget anything on the list. You should always include any vitamins or supplements you take.
- medical history (write out your own medical history and keep it handy so that when you fill out forms asking for the information you won’t forget anything. As part of it, include any relatives that had cancer. Write out what type it was, how old they were at death, and their cause of death. Also in this section include genetic test results, if relevant)
Loose leaf paper
Perfect for note-taking at appointments, jotting down questions you have for each doctor. You can file them in the approporiate category so when you arrive at a doctor your questions are all in one place.
Business card pages
These are one of my best ideas. At every doctor’s office, ask for a business card.Keep a card from every doctor you visit even if you ultimately decide not to return to them. If you have had any consultation or bloodwork there, you should have a card. That way, you will always have contact information when filling out forms at each doctor’s office. For hospitals, get cards from the radiology department and medical records department so if you need to contact them you will have it. Also, you want contact information for all pathology departments that have seen slides from any biopsy you have had. You may need to contact them to have your slides sent out for a second opinion.
This is also a good place to keep your appointment reminder cards.
CD holders
At CT, MRI or other imaging tests, ask them to burn a CD for your records. Hospitals are used to making copies for patients these days and often don’t charge for it. Keep one copy for yourself of each test that you do not give away. If you need a copy to bring to a physician, get an extra made, don’t give yours up. If you need to get it from medical records from the hospital, do that. You want to know you always have a copy of these images.
Keep a copy of most recent bloodwork (especially during chemo), operative notes from your surgeries (you usually have to ask for these), pathology reports, and radiology reports of interpretations of any test (MRI, CT, mammogram, etc.) you may have had. Pathology reports are vital.
Calendar
I suggest a 3-hole calendar to keep in your binder. This will serve not only to keep all of your appointments in one place but also allow you to put reminders of when you need to have follow-up visits. Sometimes doctor’s offices do not have their schedules set 3, 6, or 12 months in advance. You can put a reminder notice to yourself in the appropriate month to call ahead to check/schedule the appointment.
Similarly you can document when you had certain tests (mammograms, bone density, bloodwork) so you will have the date available. I usually keep a piece of lined paper in the “scheduling” section of my binder that lists by month and year every test/appointment that is due and also every test I’ve had and when I had it.
Sticky note tabs
These can be used to easily identify important papers that you will refer to often, including diagnosis and pathology. These stick on the side of the page and can be removed easily. As your binder fills up, they can be very helpful to identify your most recent bloodwork, for example.
Plastic folder sleeves
These are clear plastic sleeves that you access from the top. They can be useful for storing prescriptions or small notes that your doctor may give you. The sleeves make them easy to see/find and you won’t lose the small slips of paper. Also a good place to store any lab orders that might be given to you ahead of time.
The above suggestions are a good working start to being organized during your cancer treatment. If you want to do something for a friend who is newly diagnosed, go out and buy the supplies, organize the binder and give it to your friend. He or she will most likely appreciate being given a ready-made tool to use in the difficult days ahead.
I also believe a modified version is equally useful for diagnoses other than cancer. When our youngest son was born with defects in his spine and hands it took many specialists and lots of tests to get a correct diagnosis. Having all of his tests and papers in a binder like this was instrumental in keeping his care coordinated. In fact, at his first surgery at The Children’s Hospital of Pennsylvania they gave us a binder to assist in this process. I know some hospitals do this for newly diagnosed patients already. Maybe my tips will help you or a friend know how to better use the one you already have. You may not need all of these elements depending on the complexity of your case, but I hope you will find some of these suggestions useful.
Link to Twitter
When my brother was diagnosed we walked away with a shopping bag loaded with new information – sorting through it was a monumental task – being able to org in a binder using your recommendations would have saved a lot of time … I’m going to create a binder now for myself as I have a complex set of issues – though not cancer – and this will really be useful. Thanks for mentioning this as well.
Be well.
Excellent idea. same idea as for genealogical research, and I hope I never have to use that knowledge to make a binder as described here.
This was one of the first posts I ever read of yours. I thought it was brilliant at the time, and it’s still brilliant now. Thank you, Lisa.
What a fabulous ideas for an otherwise horrible situation. This would be helpful for so many scenarios. You should put some together with those cute binders from Target, and sell them!!
Such a great idea, as a fellow organizer, it feels good to have some measure of control of a situation you have little control over.
Another suggestion that worked for myself and my siblings when my mom was in the hospital, a nursing home, and then in hospice care, was to use Evernote online. We scanned important forms, business cards, and kept a file for questions that needed to be asked. My brother who lived out of the area was able to see what was going on with Mom and was able to add questions to the list for our next encounter with the Doctor/Staff.
Heard you on DoctorRadio this afternoon. I started a medical binder when my husband was hospitalized 2 years ago, but having the step-by-step organization will make keeping it all straight a blessing.
It has been 2 years since my BC diagnosis and I have a basket in my office (as well as a small suitcase in my closet) filled with all my various medical reports and documents. I get copies of everything that happens, but I never take the time to file any of it. I am always shuffling papers and sifting through piles to find what need. I even bought a bright orange 3″ binder … but it is still empty. I found it hiding in another closet when I was putting away my Xmas decorations. I am chronically medically disorganized!
Thank you for taking the time to post these tips, they are exactly what I need to get going. 🙂
This is exactly what I have done. So happy you wrote it all out to help others.
excellent advice, and I love the idea of doing this for a friend as a gift. I have my medical binder (don’t remember where I’d heard the idea) and yes, whenever I go to the doc and there is an issue, I pull it out and he or she is always pleased. and keeping track of everything and getting it organized helps gets some of the stress out of your head. another helpful thing was having someone (it was my sister) come to all my appointments and be my second set of ears – sometimes I was so overwhelmed I would miss a lot of what the doctor was saying, but she listened and took notes.
ps – adorable puppy! welcome to your new addition!
I remember the first time you posted this, and then and now I think it’s a wonderful idea.
Fabulous post… Wow. And for patients who might feel they are too preoccupied or overwhelmed, I would suggest assigning the task of maintaining the binder to a very close friend or relative (especially if that person is able to accompany the patient to appointments). Although I think this would be different now, when I was first diagnosed, I don’t think I understood the magnitude of how serious it was. I was pretty young at the time and had a very active toddler who was the only priority I was able to really focus on. Thankfully, a dear friend (who is organized, thorough, and really smart) took it upon herself to do research and compile information for me. At first, I thought she was having an almost neurotic reaction to my illness; but after I began treatment, I realized that her help was indispensable (as is this post and the checklist… Lisa, you are amazing).
If Gov. Romney gave binders a bad name (and did he ever), you’ve helped to rehabilitate them to their former respectable place among useful tools for dealing with complex issues.
Lisa,
I’m a friend of AM’s [and] I ‘ve been following you [and] your blog for awhile now. I knew the minute I started to feel like a lurker, I would need to make your acquaintance. Thank you for the benefit of your writing about your lived experience in the moment with the high level of candor and transparency.
You are an example of what being intentional with your time actually looks like in the flesh.
I will not say that I know what you’re going through, but I will say I understand the elements that transcend the diagnosis as I am a heart transplant recipient secondary to heart failure caused by chest radiation and Doxorubicin used to treat a childhood cancer. Transplant are band aids not cures as you likely already know.
I simply wanted to express my gratitude to you for the ongoing encouragement of your words.
Standing with You
Stephanie Zimmerman
Excellent advice! I shared it on my facebook community page: https://www.facebook.com/ClutterCleanIn2013
Great advice!! I have a young son who is “medically complicated” with a list of specialists, and I have been putting off organizing his life for years. I have done things in spurts-like having a therapy journal for his PT, OT, and SLP to write updates in, and using a gluestick to put doctor’s business cards in the back of another journal to track his appts. But one place for everything has it’s advantages and I am going to get on that project this week. Right after I finish my coffee. 😉 Good luck to you!
Great idea Lisa, I agree that the business card holder was a stroke of genius:
Other sections that I’d include:
– nutrition/dietary advice;
– support information (peer groups/counselling).
Thanks for the valuable information, Don
As if they’d read this post themselves, my medical team gave me a binder extremely similar to what you describe here, even down to the sleeve for business cards (which they’d already filled with those of the specialists I had seen that day). It needs some tweaking because their version is slanted more towards educating me, rather than keeping track of my records. But still…I’m glad someone did the initial work for me because it takes a lot of focus to get the darn thing started!