Cancer Notebook
When someone is diagnosed with cancer, they are profoundly and immediately changed. ‘Overwhelming’ is a gross understatement. Then there is all the new ’stuff’ you have to do - doctors, labs, surgeries, treatments. I am going to add one more, very important, thing to your ‘to do’ list. Start a Cancer Notebook.
I learned, very early in my cancer journey, that doctors don’t necessarily communicate well. You will most likely be traveling to a number of doctors or medical facilities. And asked a LOT of questions, reapeatedly. You will find out that doctors do not necessarily share precious information about you with each other. This is where your notebook just may save your life when you are in the fight of your life - battling cancer.
Start the notebook with a complete medical history - all surgeries, diseases, conditions, medications, etc.. Anything your doctor asks you for in the way of information should be added to the notebook.
Also, include all the doctors you are seeing - general practitioner, cardioloigst, oncologist, etc.. Any, and all doctors should be included, along with their addresses, phone number, and specialty. List all the laboratories where you commonly have lab tests, such as blood tests, xrays, mammograms, etc.. And any facilities that might have imaging or laboratory tests pertinent to your cancer diagnosis.
Now, you need to start filling your notebook with reports. When you are first diagnosed, your doctor will discuss your diagnosis. He/she get much of that information from your pathology, hematology, or surgical biopsy report. You need a copy of that report to put in your notebook. This is a MUST! If you had multiple biopsies or surgeries, make sure you get copies of ALL pathology, hematology, or surgical reports. Every time a piece of cancer is removed from your body, you need the report
You should get copies of all reports from imagings, labs, ekg’s, pre-surgery tests, etc.. And it would be very beneficial if you could get your ‘consult’ reports. Normally, when one doctor sends you to another for an ‘opinion’, they draft up a consult report to summarize their opinion about your case. Get copies of these and put them in your notebook.
Now you are ready and armed to do battle! When you go to see a specialist, you will have everything they need to review your case, wisely. If you have just a few reports, you may want to make copies and give them to the new specialist. They may not know any of this information. You would be surpised how many doctors do a consult without being given the entire history of the patient. They depend on you, most often, to verbally tell them everything. Well, being a cancer patient, your mind might not be clear enough to remember it all yourself!
Oddly enough, doctors treat cancer patients as if they should be clinical, calm, and detached in their view of their own cancer. I don’t know about you, but I was anything but calm and detached. I was nuts! My notebook somehow saved me from looking nuts, though. I ‘had it all together’ - at least in the notebook!
Take Care, Sharon Lane www.rare-cancer.org