The third presentation on Friday was by Debbie Birns, a 10-year veteran of the IMF Hotline, on Monitoring Multiple Myeloma: Making Sense of Tests and Results. This was a highly anticipated presentation and she did not disappoint. She pointed out that she is not a doctor, she is a translater of the information. Her job is to help you understand what the test results mean. She made several very important points.
After explaining what tests can tell us, she told us what we need to be careful about when we look at results:
- Don't compare results with other patients.
- No human body is in a steady state. She said test results may vary about 15% either way without necessarily being cause for concern.
- Patterns of results over time are more important than any single test result.
- No single test tells the whole story.
- For some patients, certain tests are more important than others.
- Normal lab values (usually expressed as a range from ULN and LLN) vary from lab to lab.
- Test results can also vary from facility to facility.
- Make sure you are always looking at values expressed in the same units (i.e. grams, milligrams, liters, deciliters, etc.).
- Get and keep copies of your test results.
She then went on to explain the different types of tests--lab, imaging, pathology, and genetic.
She also reminded us that there is a publication on the IMF website called The Myeloma Patient's Guide to Understanding Your Test Results.
If you have any questions about interpreting your test results, call her or the other Hotline Coordinators on the Hotline at 800-452-2873.
I think next time we should film this session.