The must-have binder: my key to being an organized patient (or caregiver)

March 16th, 2011 § 24 comments

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.

 

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§ 24 Responses to The must-have binder: my key to being an organized patient (or caregiver)"

  • Such a well-thought out idea, perfect for other medical situations, too. Be sure not to forget the Sharpies!

  • Chris A. says:

    You are right. When the doctor says you have cancer your head starts to swim. As the spouse of a cancer patient I can attest that the swimming happens to everyone. I know that I felt I was supposed to stay calm and be the rational clear headed person in the room but it is not possible. Since the day of the diagnosis I’ve been struggling to figure out how to keep everything organized and this is a great, practical tool. I love the ideas of Sharpies being part of the kit (thanks for the addition Julie).

  • Katy Creux says:

    Great advice! I’ve used this type of thing before too, and it’s also great for keeping track of everything during a complicated pregnancy. I think sheet protector pages might be a good addition too. I like the idea of the business card pages. Now that my medical issues are less complicated, I use a 5×8″ spiral notebook (fits in my purse or tote) to keep track of info and questions to ask — I got one with several sections. I have a spiral for my son’s info too.

  • Erika Robuck says:

    You rock! What a great idea!

  • Amy says:

    Great piece – one that will save many patients and doctors a lot of frustration. The Binder was one of the best things I did at the outset, but I didn’t think of some things you’ve suggested here. Love the idea of gifting these to new patients!

  • KimBaxter says:

    Thank you, Lisa. This is so helpful. Your practical ideas about how to make parts of the process more manageable are always great.

  • Lisa, great idea to give to others. I feel helpless and never know what to say or do when I learn about someone who has developed cancer. Now I know a great way to help. Thanks for sharing this.

  • So glad you all are finding the ideas helpful. Of course, Julie, ANYTHING is a good reason for Sharpies (you know I’m an addict) … I suggest the jumbo rainbow pack to coordinate with your divider tabs!

  • Joanne Firth says:

    You have come up with the ultimate guide to organize a medical issue. It is so important to have all of the information in one place, easy to get to. From the day of diagnosis, things move so fast. Thanks for the great detail you went into to put a binder like yours together.

  • Cath Duncan says:

    This is such a great idea! I have an hereditary kidney condition that’s given me a lot of medical complications lately and I got into the habit of keeping a file like this – when you’re dealing with multiple specialists, it’s very empowering to keep your own copies of their referral letters, reports, your lab results, etc. I got funny looks every time I asked for copies, but almost every time I was referred to a new specialist they had not received copies of my notes and then I was able to give them my copies. Also, I often found that I was so scared and overwhelmed in the doctors office that I didn’t take much in, and then receiving their report afterwards, in writing, gave me an opportunity to review and better understand the doctor’s views. And then there’s the complicated job of managing medical aid claims…!

    Are you going to package and sell files/ packs like this? I think it would be a FAB idea!!!

    An additional thought… I would want a second file that covers some slightly more right-brained/ creative/ fun stuff… a space for photos, a place to stick the cards and get-well notes you’ve received, a space for journaling… those 2 files would be the ultimate support pack!

  • Caroline Y says:

    Lisa, this is great. I will share this with friends who are going through cancer or other serious illnesses. I like the idea of you packaging these kits to sell to people who are newly diagnosed, or for friends/family to purchase for them. I am always unorganized, so this will really help me if I am facing a serious illness. Thanks for another great post!

  • Becky says:

    I totally did this with my mother. I still have the notebook actually… but that’s another blog post all together.
    I felt organizing was the only way I could have some control over something that was throwing me around like a rag doll… plus, the doctor’s and nurses give you so much information that it’s impossible to comprehend.

    Love this post!

    • Becky, that’s what it did for me… gave me a tiny bit of control over something that had rocked my world and turned it upside down. I am very organized anyway. It made me feel that I was on top of everything… that I was doing all that I could. It was part of feeling that I was making the right decisions and doing the right things when it came to my treatment. Whether I did the right things or not is another issue!

      Another important aspect is that it sent the message to my doctors that I *was* a take-charge person– it let them know I was involved in my own care and took it seriously.

  • Chris Yerkes says:

    I’ve been thinking about this great post for the last few days. While I’m thankful not to need the binder for a medical condition at this time, I think it will be an incredibly important tool for organizing other kinds of life details, like my advance directive, will, life insurance policy and so on.

    I think Cath Duncan above is on to something–you should market these!!

  • I kept notes when both sisters had cancer. Now when I look back on them, I see thinks I didn’t see before. I have found this information very helpful with upcoming things for myslef or I’m afriad we will need in the future for our children. Great ideas.

  • Lisa Michaels says:

    Lisa,
    This is the best advice I have ever seen. A friends 6yr old daughter was diagnosed with Wilms’ Tumor and i am going to put together a folder for them as a gift for mom and a way for Annaliese deal with everything, I am going to add a sketch pad and color pencils so she can draw or keep her own memories.
    By the way I wanted to let you know how I found your blog, I’m Kathy M’s daughter in law.

  • Ellen Sonet says:

    Thanks so much for sharing your system for keeping info straight. Many folks find that keeping track of information in a systematic way helps them to feel they have a bit of control over the chaos of living with illness. I hope you don’t mind if I share your blog with the patients and caregivers who have joined the Memorial Sloan-Kettering Cancer Center online community.

    • I would love it… I have toted that binder to my appointments with Dr. Dang for a few years now… she’s been so supportive and helpful with my care. Thank you for sharing it with the community.

  • Are you a type A personality? I keep a journal and put my appts in my phone and have all my Dr’s numbers in there as well. Good for you and good advice but I could never be this organized. I don’t presently see very many doctors and if I need records I can get them easily. I have a lot of stuff on my computer too (backed up) so I guess everyone has their own way.

  • Carla says:

    Hi Lisa,
    This is such a great and helpful post – I want to share it with everyone I know dealing with the logistics of a chronic or terminal health or mental health issue.
    A friend of mine who lost her son to a brain tumor also struggled with the logistics of managing all of the information related to his diagnosis and treatment, and she ultimately created a system for it, which she calls “ZaggoCare”. 100% of the funds from the sale of ZaggoCare go to support research into the specific type of tumor that her son had. If you’re interested, or think it might be helpful for other folks, check it out: http://zaggocare.org/ (I promise I’m not trying to sell anything here! Just thought it might be a useful resource to share.)
    Thanks for sharing your story and wisdom-
    Carla

  • Michelle says:

    Thank you so much for posting this. I heard about the cancer diagnosis of a wonderful person yesterday, and was thinking of how I could possibly help. Your post helped tremendously. Thanks, again.

  • LindaB says:

    Thank you!!! I started with a folder when I was diagnosed with breast cancer just 33 days ago. It’s already a bulging 1″ thick… So tomorrow’s project is to use your content ideas and transfer it all to a 3-ring binder – colorful but not pink.

  • Rachelle says:

    THANK YOU for this info. Cancer is a new diagnosis for our family and it had felt like the longest week. This will be wonderful for the family. God Bless you and your family.

  • Lacey says:

    I’m very type A, but I am also very anti-paper. I use an app called MyMedical on my Mac, iPhone and iPad that is synced with dropbox, so dh can access the info too. Everything gets scanned in and filed appropriately so I can access it at a moments notice.

    I agree that is is one way to actually feel a little bit of control over something that was thrown at us.

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