Article previously published in the Cutaneous Lymphoma Foundation's Forum Summer 2011 newsletter.
Empowered patients are those who become active members of their healthcare team. Obtaining and keeping copies of your medical records including images (X-rays, scans, CT, MRI) and lab results is good advice for any person receiving medical attention. For those who have chronic and/or rare conditions, it is even more crucial that these medical records are preserved. By keeping a copy of your records, you can reduce unnecessary duplication of tests and assist new physicians or specialists in seeing the full picture of your health.
One option for storing and transporting your records to and from appointments is to purchase an art portfolio holder. These carrying cases are usually sold in art supply stores and can easily accommodate large images and documents while providing privacy and protecting the items from the elements. Another idea is to keep electronic copies of this information (password-protected) on a thumb drive that you can easily take with you to appointments.
There are also pre-made cancer patient/survivor binders available. Live Strong (www.livestrong.org, 866-235-7205) provides a Survivorship Notebook that includes pre-defined tabs for organizing various types of information such as Health Journal, Medical Record Treatment Summary, Physical Topics, etc. Along with each chapter, there are forms you can fill out as well as instructions and useful information. The Survivorship Notebook is free to cancer patients and survivors.
Cancer101 (www.Cancer101.org) also provides a free Cancer Planner for patients and survivors ($18 shipping charge). This is a three-ring binder with a large number of tabs to capture details of your cancer journey and treatments, which is incorporated into a clear portfolio that includes divided sections to hold documents.
Or, you can choose to create your own cancer journey binder. Be creative and have fun, but remember to also be practical and thorough. You can include photos, letters, and notes of encouragement as well as the medical-specific topics such as treatments, medical tests/results, summary of appointments/hospital stays, names/phone numbers of physicians/other clinicians, insurance information, calendar for appointments/scheduling, and perhaps even maps/local restaurants or areas of interest near the hospital or doctor’s office that you enjoy.
Either way, it will benefit you in the long-run to have all your medical and pertinent personal information captured and stored all in one place so that it is easily accessible by you or your loved ones if you need it. Especially for patients with cutaneous lymphoma who are typically managing their disease over the course of many years where treatments change, physicians may change, too, so it is a very good idea to have your history handy so you can proactively manage your health. If you join us at any of our upcoming Patient Educational Forums, you will have the opportunity to review the Live Strong and Cancer101 books so that you can take a look at them yourself before you decide if they meet your personal needs.
And, keep in touch to let us know what works! If something works well for you, it might help someone else. We are always interested in learning about what is helping our patients and sharing this information so please email us at to share your thoughts anytime.