CancerGuide: Cancer Basics - Start Here
By Katherine Hufnagel
Obtaining Copies of Your Records
Even if you have confidence in your current doctor and don't anticipate the need to seek other opinions, you need to decide whether you want to obtain copies of the reports that your doctors make about your condition and, if you do, how and when to do that.
What kind of reports are we talking about? During or after each appointment, your doctor will make a report of the examination. It will generally include a description of your current symptoms and the doctor's conclusions about them--that is, what you told the doctor, what the doctor concluded based on them, what the doctor told you and his recommendations.
For each test that your doctor orders, the doctor will receive a report. Sometimes this report will contain only data from the test (such as the objective results of a blood or lung-function test); sometimes it will be a narrative report from the doctor reading the test (the report of the radiologist reading a CT or MRI scan, for example).
For each biopsy or surgical procedure there will be a pathology report, and for each surgery there will be an operative report. These narrative reports are key records with critical and fundamental information about your diagnosis.
Why would you want to have copies of these reports? In the course of treatment, your doctor may recommend that you see another doctor or other medical professional who is not in your doctor's practice group or hospital--or you may decide on your own to seek an additional opinion or to evaluate a different type of treatment (such as alternative medicine). These professionals will want to see some or all of your medical file.
Under federal law, you have a right to see and copy your medical records and, in certain situations, also to request the provider to correct them. Some states may have more stringent or additional requirements. A healthcare provider should give you information about its process for reviewing and copying your records, the amount of time the provider make take to provide them and the cost of copying or (on your request) preparing summaries of them as part of your registration at your first visit. If you do not receive this information, you should request it.
But collecting your medical file quickly can be a real problem, especially if you need it on short notice or have consulted multiple doctors and different institutions. You would need to request your records from each institution; each of them could have a different request form and process. Making the requests and following up on them can be very time-consuming and burdensome. And sometimes, unfortunately but predictably, records can be misplaced, misfiled or lost. Bottom line: you can't count on having your records when you need them if you request them only when you need them. And for people with a serious illness, time is important.
So what to do? Doctors are often willing to give you copies of their reports of examination or your general tests (such as blood tests) on a real-time basis if you request them before the end of your appointment and explain why you want them. For special tests, such as MRIs, CT scans, X-rays and the like, the person administering the test rather than the doctor who orders it tends to be the "gatekeeper" for copies. If you request a copy of these tests before the test is taken, the test-taker can order two copies and give you the copy at the same time as your doctor gets it. You will likely get the copy free or at nominal cost – an important element because insurance companies will not generally pay for an extra copy.
As in so many areas of life, developing good personal relationships with your doctors, their administrative staffs and the test-administrators goes a long way to helping you get what you want in the least expensive and most convenient way. If you can't get the copies through these informal means, you should consider routinely requesting the records following every appointment and significant test. My suspicion is that doctors, nurses and test-administrators will quickly tire of dealing with this paperwork and will ultimately provide the reports on an informal basis.
Reviewing Your Records
Yes, you are not a doctor, so why, you might ask, should you try to review the reports your doctor writes and your test results and scans? As Steve wrote in his article on the Pros and Cons of Researching Your Cancer, your doctor has many patients, you have only one--yourself. This is not to criticize doctors or their commitment or diligence, but rather to recognize that medicine is an art, doctors are busy and can make mistakes. They are not intimately aware of your symptoms, your life-needs or your concerns; they must focus their attention on the most significant current elements of your case. Something that seems minor to the doctor may be significant to you.
I think you should always review the reports, try to make sense out of them and diligently ask the doctor any questions raised by the reports. A doctor may have misinterpreted something you said or omitted something you believe is important to his recommendation. You won't know that this has happened unless you review the reports. Also, the doctor often provides a lot of information about an unfamiliar subject very quickly and often speaks in jargon or "medical shorthand" that can be easy for you to misunderstand. Giving bad news is not easy, so doctors may communicate it in an indirect way. This increases the possibility of your misunderstanding critical information. Reading the reports helps you to better understand what the doctor is intending to communicate and suggests questions that you should ask the doctor, whether immediately or at your next visit. You should never be worried about taking the doctor’s time, concerned about asking "dumb" questions, or intimidated about following-up; this is, after all, your illness.
And even if your review doesn't produce any insights that change your view of your illness or your treatment, at least you will know that you and your doctor are communicating.
This CancerGuide Page By Katherine Hufnagel. © Katherine Hufnagel
Page Created: May 5, 2003, Last Updated: 2001