Your Health Life in Detail

We live in a society that runs on paperwork; those who have a better handle on that paperwork tend to fare better in the system than others.  This chapter will present the reasons for organizing your medical records, what to keep track of and how, and the role Cancer.im can play in getting a handle on the paperwork that, hopefully, will grow in inverse proportion to your cancer. 

If you have been fairly healthy most of your life, your health records may well fit on a few letter-size pieces of paper.  They probably contain your height and weight, possibly the time you got antibiotics for a bacterial infection, your allergy to penicillin, and little else.  A typical treatment may have only two doctor’s annotations: before intervention, and after.  Your whole medical life fit easily into a manila folder in a quarter inch slot in your family doctor’s office’s filing cabinet. 

This is about to change, and significantly.  Treatment for cancer is not like a visit to the doctor to deal with a sore toe.  In a matter of weeks, your medical records which may once have fit into one small folder may now require several.  Briefcases could be filled with the results of the scans, laboratory blood work reports, specialists’ evaluations, and treatment courses.  Unlike a treatment for an infection or other minor disease, the chronology of these records is of vital importance.  In other words, keeping these reports and evaluations in order of what came first through what came last really matters. 

Faced with this growing mountain of paperwork, many patients may be tempted to “let the professionals handle it.”  The hope is that somehow the myriad of specialists, technicians, doctors, and nurses treating them will miraculously be able to keep track of all this information better than they can.  If all cancer treatment is being conducted in one facility (rarely the case) this may happen.  But more often than not patients will need to meet with medical professionals in more than one location who may or may not have good methods for transferring information from one facility to another.  Eventually, things will be lost.  Despite the aura of infallibility that sometimes surrounds the health profession, doctors and nurses can and do make mistakes.  Paperwork can get lost or misplaced, even by professionals. 

Other patients may have every intention of maintaining their own medical records and following the track of their cancer’s treatment.  But while these patients may be willing, their organizational ability may be weak.  Not everyone is born an accountant, a clerk, or an administrator.  How many times have you lost an important receipt?  That application form you needed to fill out for your bank?  An insurance claim report? 

Either approach can lead to more than just the loss of records, appointments made unproductive because of missing lab reports, and increased difficulty in keeping track of expenses.  The patient is removed from the driver’s seat of their treatment and begins to feel a loss of control over the whole process.  This undermines the patient’s proactivity that is such an essential ingredient to successful cancer treatment.  Having access to your well-organized health records can help you maintain a high level of control over your treatment, and allow you a greater level of flexibility to deal with unforeseen situations.

For example, what should happen if something were to happen to your doctor?  Would you feel a sense of panic, because this person or office knows more about what’s happening in your treatment than you do?  What if you need to move?  Will you be dependent on someone else to get your files and records transferred to a new doctor or cancer treatment center? 

What if you want to get a second opinion on your diagnosis?  Many patients are reluctant to get a second opinion out of fear that it may “insult” their first doctor.  Obviously, if the first doctor is the only one with access to your files, any second doctor would need to request your records directly from them unless you have your own copy to provide.  Getting a second opinion may be a good idea if:

• You have been diagnosed with a rare or unusual form of cancer, or
• More than one treatment option has been recommended, or
• The diagnosis has not been confirmed, or
• You are interested in treatment options with which your doctor is unfamiliar, or
• You are uncomfortable with the advice you have been given.

No one knows you better than you.  Having access to your own records also allows you to ensure the accuracy of the information that will be released to others.  You may find information contained in the reports that is not accurate, that needs to be corrected, or that may simply have been overlooked.  Perhaps someone has forgotten to list another medication you are on.  Maybe someone did not write down a symptom you think is relevant, either because they missed you saying it or because you forgot to mention it.  Whatever the reason, being able to review your own records not only will help you better understand your disease and its treatment, but can also help your treatment professionals improve the treatment process.