Your Medical Record Notebook
One of the very first things that you must do when you find out you have cancer is to develop your Medical Record Notebook consisting of all of your medical records. The medical records you put into your notebook should consist of:
· Information about your diagnoses;
· Your blood tests (serum tests);
· Reports of scans and x-rays as well as their films (that will need to be stored separately because of their size);
· Biopsy and surgical reports;
· Lists of all the drugs and vitamins you took including pills, injections, and infusions as well as the dates that taken;
· A pain, symptom and side effect diary;
· Any information about any clinical trials your participated in as well as information about any investigational treatment you received in the trials;
· Copies of all genetic tests results;
· Records of all your doctor appointments;
· All your doctor’s notes and records including your those from your primary care physician; your oncologist; your radiologist; your surgeon; and your anesthesiologists.
· Legal papers including your Last Will and Testament; A Living Will; Your Healthcare Proxy; a Do Not Resuscitate Order if that is your wish and a personal Power of Attorney. If you are responsible for a minor child, you should also include a Power of Attorney covering the child as well information about childcare and custody directions.
You should organize your notebook in any fashion you wish, but in our experience, we have found that a strict chronological order is best, with a separate Legal section, which should include the most up-to-date documents separated from the older voided or modified documents. This type of organization allows you to get a clearer understanding of your progress or lack of progress and will let you or your Medical Proxy make better decisions and understand your wishes and desires if you are unable to express them.
We cannot understate the importance of this personal Medical Record Notebook. It should be used to guide all your future medical decisions. As cancer THRIVERS our treatments are cumulative and so our decisions need to be based on our complete and comprehensive medical experiences as dictated by your medical records.
Make sure that you read all the records as you collect them. Make sure that you understand the information in these records. If you don’t understand ask your medical team to explain them to you. Keep asking until you are sure that you completely understand.
Your medical records will talk to, so listen carefully and pay attention to them. They will provide you with the information you need to direct your treatment decisions. Listen to what they tell you; they don't lie.
Your Medical Record Notebook is your guiding light; use it to plan your treatment path. If you see that a treatment is not positively affecting your biomarkers; ask your clinical team to provide good reasons that why you haven’t moved to an alternative treatment option.