Maintaining Your Own Records

The diagnosis of a Brain Tumour can leave patients and their loved ones in a mental fog; a fog so thick with questions that where to begin, in and of itself, can be debilitating. There are, however, ways in which you can regain control, stepping out from the fog and into the light of day.

Organisation is your key to obtaining the information you’ll need and the proper treatment necessary for your specific type of tumour. The following is a list of tools that have helped other brain tumour patients.

A ring binder can become your best friend and treatment partner, easily safeguarding all the necessary information about your tumour-type and treatment plan at your fingertips. Referrals to specialists or for a second (or third) opinion are often delayed by the need to obtain records and, sometimes, by records that have been lost along the way. Maintaining your own copies of the following will ensure your consulting doctors have access to all of your important documents at the time of your appointment. Many people maintain these records on their computer and occasionally print them out and store them in the binder as needed – since it is easier to carry a binder around! Also print out a copy of your current medications and allergies to store in your wallet or pocketbook in case of emergency! Items to include in your treatment binder include:


• Medical History – Start with a copy of the first medical history form you are asked to fill out. This will list past medical problems, such as diabetes or heart problems which may impact the treatment choice, as well as any allergies you have. An important allergy to note is to iodine or shellfish – as the dyes ( Contrast agents) used in some brain scans contain iodine. This will be helpful when you have to keep filling out similar forms. Keep it updated as things change. You can also ask your doctor for a copy of the history and physical they perform on you.


• Copies of MRI Films and Reports – Most radiological centres today can provide you with a copy of your MRI or CT (CAT Scan) on a CD that can be viewed on any computer. When you check in at the MRI / Radiology facility, it’s very important to request a copy of the film or a CD along with the written report of the radiologist’s findings. Ask BEFORE you go in to the scanner – it is easier for the staff than if you tell them afterward. Most office supply stores carry vinyl pages that hold multiple CDs safely within a binder.


• All Routine Lab and Pathology (biopsy) Reports – Having your personal copies of these items available for review on demand will save time, increase your understanding, and in some cases, eliminate the need for unnecessary blood work. As a bonus – if you are computer literate – keep track of lab results in an Excel spreadsheet – so you can graph results over time and see how you are doing.


• Medication At-A-Glance - It’s important to disclose all the medications you take to your Consultant and care team members. Keeping an up-to-date medication record in your treatment binder (including herbal supplements and over the counter items) can provide a quick and clear snapshot of your daily meds at-a-glance

– reducing the chance of error when more than one doctor is involved with your care.

You may experience symptoms that are medication related; side effects to a medication that one member of your medical team may not realize you’re taking and thus may be incorrectly diagnosed or treated.

Take your treatment binder to every appointment with every doctor and request that they review this list before prescribing any new medication.


• Location, Location, Location – Knowing the exact location of your tumour will assist you in many ways. By researching the functions of that part of the brain, you can more clearly understand (and be prepared for) many of the symptoms you are experiencing, or might expect to experience. Ask your Consultant to be specific about the location, perhaps even provide you with a diagram of the brain with a pencilled-in tumour site. To understand your tumour, and thus certain therapies available to you, you must understand your tumour’s location. Ask what symptoms to expect if the tumour expands.


• A Personal Diary – Keeping a diary is very important as you travel through various treatment options with specialists, beginning on day one! Recording your specific questions and concerns will help ensure that the answers you and your loved ones or caregivers need are addressed by your medical team. You may want to create a separate section for each team member, writing down which doctor is responsible for the various aspects of your care; medication refills, routine lab work, referrals, as well as, what was discussed at appointments. Questions often arise after leaving an appointment and referencing these pages later may be helpful.

It’s also recommended that you maintain monthly calendar pages to record the start of new medications or therapies, and any bad reactions to them. The starting times of symptoms and side effects may be difficult to recall at a later date, but are important to distinguish their origin.


• Phone numbers – Record the name, address, phone number, email address, and a short description of all of your important contacts: include your family members who should be contacted in an emergency and all of your doctors.


• Including Loved Ones and Caregivers – It’s all too common; you enter your doctor’s office with a list of questions and as your Consultant begins to satisfy his/her query of information, you forget your questions, or worse, forget their answers. Emotions, not your brain tumour, are typically responsible. Emotional support and a second pair of ears can be of tremendous help while you navigate through a new world of tumour terminology.

Whenever possible, take a friend, loved one or caregiver with you, even for seemingly routine appointments. Aside from taking notes of your session, should an overwhelming moment arrive during your Consultant’s explanation of a particular treatment, necessary tests, or expected results, another person will often hear (or interpret) details differently and be able to ask questions that you might not think of at that moment. Encourage them to make frequent notations or observations in your personal treatment binder and take an active role in your care options. If your Consultant will allow recorded sessions, have your companion manage a small, hand-held recording device and review the discussion afterwards with you.


This information is reproduced with the kind permission of Al Musella of the Musella Foundation and www.virtualtrials.com

Source: http://virtualtrials.com/faq/index.cfm


The following documents can be printed and added to your folder to help you keep track of various aspects of your treatment:


Medication Record (PDF - Adobe Reader Required) 

Treatment Record (PDF - Adobe Reader Required) 

Recording Seizures (PDF - Adobe Reader Required)

Adobe Reader download

This page was last modified on 21st October 2012 at 21:17

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