It wasn’t so long ago for you and me – and still is for millions of others – that whatever the doctor said was all that mattered. And usually the doctor didn’t say all that much. He or she would tell you what they thought was wrong with you and what they were going to do about it. We simply nodded our head and wanted to get well.
Then the Internet came along and we started talking to one another. And we started talking about our test results. The newbies would ask the patients who were diagnosed years before, what does this mean? What does that mean? And the “black box” of medicine started to be unlocked. That was part of the foundation of “patient empowerment” – we began to understand the subtleties of our individual situation and we began to learn about treatment options on our own. Of course I love that!
As medical science has been peeling back the layers of illnesses we’ve been learning about subtypes and tests have been developed to look for them. HER2 tests in breast cancer, BRAF in melanoma. And we want to know the results and the numbers. That’s surely true for me about my lymphocyte count as a leukemia (CLL) survivor.
One of Patient Power’s most popular video programs right now is with my friend Dr. Susan Leclair, a professor of laboratory science. She knows blood testing backwards and forward – and tests of many other substances too. In her recent interview she explains the components of a typical blood test and, as an example, when it comes to Chronic Lymphocytic Leukemia (CLL), what doctors and patients are looking for.
Lately, there’s been buzz about genetic subtypes of disease – especially cancer. We used to talk about whether someone had breast cancer or lung cancer. Reports stated where the cancer was and how big the tumors were. Then we started talking about the biology of the cancer – the subtype. Targeted medicines have been developed to go after a specific tumor biology – again, HER2 is a great example.
Now doctors are finding that HER2 cancer may not just be in the breast. It could be part of the makeup of a primary tumor somewhere else. In other words, the key part of a test may not be where a cancer is but its biology. Hence a HER2 medicine might be used for cancer in several locations.
That brings me back to you and me. We’ve already been trying to understand our blood test results. Now we will find ourselves learning about ever more sophisticated tests. We need to know and be an active part of the discussion on what the results mean and what the best plan is to act on what the tests show. Medicine is evolving in this way and if you are the one with the illness you want to make sure your doctor has a plan to offer you the best treatment based on even the most subtle test results, not what they would have done a year ago before some of those tests even existed.
As I describe in my book, The Web-Savvy Patient, there are right ways and wrong ways to speak with your doctor about test results. It is not about challenging them. Rather it is about exploring the results together and understanding what is significant and what is not.
Again, we’ve come a long way as patients from not knowing – or caring – what test results said. For my money, that’s a really good thing.
Wishing you the best of health,