Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work, Emeritus
AUGUST 20, 2018
When Less Is Better and More Is Worse
Incidentaloma is a brand new word in my vocabulary and in Cancer World. It means all the abnormal things seen on scans that were not expected and were not being looked for either because the patient had no symptoms or because the test was ordered for another reason. This is familiar territory for many cancer patients.
Here is the way it usually unfolds: a scan or MRI or mammogram is ordered, and the radiologist spots something else. That incidental something usually begins a cascading series of events: more scans, tests, bloods and lots of anxiety. We can remind ourselves that if people were randomly taken off the street and given scans, it is highly likely that somethings would be spotted and would turn out to be nothings.
Once you have had a cancer diagnosis, however, all of these somethings take on a more ominous meaning. Say you have a scan to check on your known lung cancer that has been stable for months. The lung cancer still looks stable, but the radiologist sees something on your liver that needs to be investigated. It could, of course, be the lung cancer that has spread, but it could also be one of a number of possible benign, not worrisome, things that sometimes show up in livers. This is just one example of scary events that can unfold in many ways. The common thread is that you begin the process with concern X and then end up worrying about and chasing concern Y.
A study just published in the British Journal of Medicine states that these incidentalomas are unlikely to turn out to be cancer. But along the way to that conclusion, the patients suffers a lot of stress and anxiety, and experiences scans and tests that are never pleasant. And, of course, there are the bills.
This is all worth considering next time you wonder whether you should have a scan or test. There are times when it is the right practice to have these tests, and the results can be vitally important in planning and providing the best care. But there are other times when nothing helpful is going to come of the process, and a whole lot of unpleasantness and even harm may occur.
This also raises the disconcerting reality that is it not always helpful, in terms of extending life,to discover a new met or cancer progression a little sooner rather than a little later. This seems counter-intuitive, but many studies have proven that, for example, finding a new bone metastasis, as an incidentaloma in a breast cancer patient several months sooner than it would have been found once she experienced a symptom does not extend her life. That is, treatment works just as well and just as effectively if it begins in March rather than the previous November. And knowing about this new bone met for extra months most certainly adds to the stress and anxiety in her life. Sometimes ignorance, if not bliss, is at least not dangerous.
I have been in many discussions with people who worry that less frequent scans may be dangerous and wish that even closer surveillance were part of their care. The general trend in oncology care has been fewer tests, not more, unless there are symptoms or protocols or other reasons to proceed. More is not always better and less is frequently more.
Has something like this happened to you? Tell us about it: http://www.cancercommunity.bidmc.org/