Another one of those reviews of the ASCO conference that I expected would be helpful -- this one from Dr. Anne Blaes from the University of Minnesota, called "Symptoms, not surveillance, as effective at detection of relapse in some cancers."
Dr. Blaes works with cancer survivors, and was particularly interested in some of the ASCO presentation on imaging -- the use of CT and PET scans, especially in helping to discover relapses. Most survivors want to know just how often they'll be scanned after they've had a response to treatment. (I know I do.)
She describes two particular lymphoma studies, one for Diffuse Large B-Cell Lymphoma patients and the other for Hodgkin's patients. In the DLBCL study, 500 patients were followed, and given follow-up scans every 6 months for 2 years (which is standard). Only 1.5% of those scans actually detected a relapsed lymphoma. In the Hodgkin's study, a similar result was shown: little benefit for routine follow-up scans so frequently.
The costs for scans are high, in emotionally (anxiety, false positives), physically (all that radiation), and financially (in one of the studies, detecting just one relapse cost about $600,000, and that's not calculating what happens after the detection).
As Dr. Blaes points out, those scans, while they cause some anxiety, also make us feel good -- we have proof that things are OK (or that things aren't OK). But maybe they aren't worth what we get out of them.
Just as effective? Regular blood work, physical exams, etc.
This kind of study makes me more and more pleased with my own beloved Dr. R, who won't do a scan unless he has a reason, all part of his larger "Do No Harm" philosophy. I would think that just an approach would even more important for Follicular Lymphoma and other indolent cancers, where (hopefully) problems aren't going to pop up too quickly.
There's a balance that takes a while to come to a Follicular Lymphoma patient -- a need to stay vigilant with a need to be able to just let it go -- but it does come. We learn to know our bodies, and to recognize when something just isn't right. When we learn to trust that sense, and our doctor's knowledge, the things get easier.
(Not easy -- just easier. Let's not get carried away....)