When you have cancer you will be going to many different doctors. Each time you see a specialist this doctor will need to know your specific diagnosis and specifics about you. Oncologists need to know everything they can about you and your individual case, so they can offer the best possible advice and treatment plan.
You probably started with your primary care doctor, and then were referred to a surgeon or urologist or medical oncologist or radiation oncologist or all of them. Each time you meet a new doctor they will need to review all of your tests and procedures that you have had done. The doctor’s are supposed to send all of this information to the next doctor before you arrive. Sometimes there are delays in transferring your information to the next doctor. This is a delay that can be avoided, and you can help. I know you are feeling overwhelmed by your diagnosis of cancer but by getting organized you can feel more in control of what is happening to you.
Every cancer patient has a team of doctors, nurses, pharmacists and others that are working for you and towards your cure. Being a part of that team will help you feel that you haven’t lost control over your body or your life. A patient often feels like they have become an object rather than a person. You can feel like you are just following instructions: take this pill at such and such a time, be at the hospital for this test at this time, show up for chemo on time, don’t be late for your radiation treatment, etc. Yes it is important to do all of the above things. But you can have influence on your care by becoming a true member of this team that wants to help you get well.
One of the ways you can do this is to start a notebook or file containing your journey through cancer. You can request and receive copies of your test results as you go along. An example is to ask for your pathology report. This where the whole journey starts, the diagnosis of cancer. Each doctor you visit will need to see the pathology report to know exactly which type of cancer you have. Not all breast cancers are the same type of cancer and the type of cancer you have will determine the type of treatment you will need to have. The same thing is true of prostate, lung, brain, colorectal, leukemia, lymphoma and other cancers. So the pathology report is key information.
Other things that will help determine your treatment are your diagnostic imaging reports and films. These may include X-rays, Cat scans, Pet scans, Pet/CT scans, MRIs, and Mammograms, among others. When you go for these tests you can ask for your own copy of the report and a CD of the images themselves. You should be able to get a copy of the CD at the time you have completed the test. It will take awhile for the radiologist to read and review your test so the report won’t be available immediately after the test, but may be sent to you if you request this.
Your blood works, laboratory tests, are also important for each doctor to know. A PSA level is essential in prostate cancer. Blood work such as your blood counts and electrolyte levels are important when you are having chemotherapy or biotherapy. You can ask which ever doctor orders these tests to give you a copy of these results.
If you have had surgery, a copy of your operative report is helpful to have. You can ask your surgeon for this when you go for your first appointment after your surgery.
A list of all of the medication that you are taking or have taken in the past few months is essential for all of your doctor’s to have. This list should include prescribed medications, vitamins, minerals, supplements and any other over the counter medicine such as pain relievers (Tylenol, Advil, Motrin, Aleve etc.) and allergy or cold pills. Keeping this list up to date is important, so if you stop taking a medication please put a line through your list so the doctor will know you were on this medication but aren’t now. Also if you are taking recreational drugs, it is important to tell this to your doctor.
By having a file or notebook in which to keep all of this information, you are ready at all times to see a doctor, who with this information can be up to date with your case with a reading of your tests and results.
Another good idea is to have a calendar to help you coordinate your life. Since you will probably be busy with appointments relating to your cancer and hopefully you will still be able to live a real life, a calendar will help you plan. By checking with the calendar you can find time for friends and activities that you enjoy. It will help you organize better. If you have an appointment, which you will be done with just before lunch, perhaps you will want to meet a friend for lunch at a restaurant in the same neighborhood where your appointment was. Or if you get tired after chemotherapy, you may want to plan a nap before your meet with friends or family, or you may wish to reschedule meeting with loved ones until the next day. Keeping track of appointments and planning ahead is a great way to maintain control of your life.
Many people, but not all, find keeping a personal journal of their cancer experience helpful. This may be a good way to help deal with the stress of cancer. You may wish to do this in a private diary or you may wish to share your journey with friends on the web. There are some free sites on the web that help with this such as: CaringBridge and CarePages.
These are some suggestions that I hope will help you to feel more a part of the team that wants to cure your cancer.