How many of you have kept or requested a copy of all your medical records?
It became increasingly apparent to me during my post treatment phase when I moved to another city, that the reality of my records being accumulated and/or transferred to one place was rather remote. Some were there, but not all.
When I was diagnosed in 1990, I was living in a small town on Vancouver Island. My family doctor practised in the next small town. My surgeon was in a larger center a good hour’s drive north. Chemotherapy was also given in this center. Radiation treatment was administered in a city three hours south which required a stay in the Lodge across from the hospital during the week. And my initial assessment was done on the mainland a ferry’s ride away.
There were records in each of these centers, plus my doctor’s office. And, in the process of gathering them all together when I moved back to Calgary, I discovered that my original pathology report was missing. Fortunately, I had obtained a copy previously so I had it in hand. This is a record you need if, heaven forbid, your cancer ever comes back.
Over the years, I have had to refer back to these records on occasion and am so grateful that someone encouraged me to compile my own file.
What I would have liked was a system for when I was going through treatment. In the article below, Jackie outlines a very simple and effective way to do this. I encourage you to follow her instructions, even if you are long past your treatment – gather it all together. You may need it someday and with records not being kept past 10 years, who knows if you will be able to access your records when needed.
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Create Your Medical Records Book –
by Jackie Malena, founder of Surviving Cancer 101.
It is so important to be a “good” patient, and a big part of that is being an informed patient. Know right now that it’s your responsibility to gather the information you need.
First and foremost, buy a big three-ring binder so you can keep your medical records in one place. Make sure your binder has big rings in it. You won’t think you’ll need it but it will fill up fast.
Your medical binder should contain the following:
1. A three-hole punch that snaps into the binder. (They are flat and cost about $1.)
2. A business card holder page to keep all your doctors’ business cards. That way you will have telephone numbers handy at all times.
3. A zipper bag to hold discs from your scans.
4. A spiral notebook for notes and questions. Put dates by all your notes, and write down pertinent information like center locations, doctors’ names, etc., in your notes.
5. In the inside pocket of the binder, keep a running list of all your medications and supplements. Keep the list on a piece of paper you can easily pull out and share at appointments.
As your journey continues, you will see lots of different people so it is critical to stay organized. After every medical visit, make sure you always get a copy of the doctor’s notes, pathology results, scan reports and scans. They may not be ready right away but when you are checking out or setting up your follow-up appointment, ask the scheduler when you can pick up the notes or if they can they be mailed, faxed or e-mailed to you. Get your scan images and reports from the radiology department of the facility where you had your scans. Many hospitals and imaging companies offer them on disc now so you don’t have to carry around the big x-rays anymore.
During the cancer process, many doctors, nurses, technicians, assistants, etc., will touch your file. That leaves a lot of room for error, so it’s important to know what is in it. Once you get your reports, read them. I know this can be scary but it’s necessary. If you don’t know a word, “Google” it or look it up in a medical dictionary. The more informed you become on your disease, the easier it will be to deal with and heal. You also lesson a chance for error.
Take your binder with you to every appointment. Even if you are being seen for a cold or an annual check-up, take it with you and get those notes. One drug or procedure could affect another, so make sure all doctors in your journey are up to speed on what is going on with you. On top of just being a smart thing to do, this will give you credibility with your doctors and I promise they will deal with you a little differently than before. Good doctors want you to be informed. If your doctor doesn’t like your proactive approach, think about getting a different doctor.
Remember, this isn’t about your doctor’s journey; it is about YOUR journey. Don’t take a chance of dying polite!
About the Author: In her nine-year battle with cancer, Jackie has learned so much. Her website, www.survivingcancer101.com, along with her book ‘Surviving Cancer 101, From Discovery to Recovery’, allows her to share–from one cancer patient to another–the valuable tips and tools that made her journey manageable.
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So, now you have a simple system – take the time to put it together. If you don’t feel up to it, ask for help. I’m sure someone in your circle will be more than happy to lend you a hand. I always found that those close to us are always looking for ways they can be helpful – to be supportive – and make life a little easier for you.
For some of us, it’s pride that holds us back. Check your pride and give someone else the gift of helping you.