It is very important, once you are diagnosed with cancer, to obtain copies of all your medical records, both for your own understanding, and so that you can make copies for the specialists you might want to consult. The following is a list of the reports and test results that you need to keep in your medical folder.
Start by making a chronological log of all your PSA tests with dates, and note in the log any general health changes or treatments that might impact your PSA.
Then obtain the following:
· A copy of your urologist’s notes that discuss the results of your Digital Rectal Exam (DRE).
· A copy of your urologist’s Transrectal Ultrasound (TRUS) report that lists the size of your prostate in grams or cc. It may also indicate other findings that are part of your biology.
· A copy of your Biopsy Pathology Report. This should provide your Gleason Score, how many cores were positive, the extent of disease in the cores, and possibly other important clinical diagnosis information such as the location of the cancer within the prostate gland. It is also wise to retrieve your biopsy slides from the pathologist and send them to a world-class cancer treatment center, such as MD Anderson, Johns Hopkins, or Cedars Sinai, for a second opinion. In fact if you live in a small town or in the country, if possible you should find a urologist at one of the major centers for a consultation before making a treatment decision.
· Get copies of the written radiology reports for any scans (color Doppler ultrasound, bone, CT, MRI), and get digital copies of the actual scan if available. These are necessary for any future radiologist who will want to compare them with new scans.
· Lastly, it is advisable to include in your medical folder copies of all information regarding your medical history, including any current (unrelated to the prostate cancer) health problems, even if they seem minor. Also, a printed list of all your medications (along with the dosages) and any supplements you are taking.
If all this seems overwhelming, ask your partner to help you create a medical folder. Finding out that someone you love has been diagnosed with prostate cancer is a devastating blow. Your partner also feels worried and scared and helpless. Having something constructive to do, like organizing your medical information, can help her (or him) obtain some feeling of control over the prostate cancer.
Creating this Medical Records Folder will save you time and anxiety. Much of what you have read here comes from the advice of my writing partner, oncologist Mark Scholz, and can also be found in more detail in the pages of the Prostate Cancer Research Institute (PCRI) Papers and Newsletters.