Rene B: Hello, I am a CLL (chronic lymphocytic leukemia) survivor, and I just want to know how often I and the many other CLL survivors should receive a CAT scan or an MRI (magnetic resonance imaging).  Is it only when we are having symptoms, or is it standard procedure?  Now, if it’s not standard procedure, how will the doctor know when the cancer has returned?  I feel like blood tests and consultation is just not enough.  So, that’s my question.

Dr. Nicole Lamanna: Hi, Rene.  This is Nicole Lamanna, a CLL physician at Columbia University in New York.  This is an excellent question.  I think people always ask how much testing is reasonable.  Routine CAT scans or MRIs are not considered standard of care for following the disease.  Blood tests and physical exams should be included to monitor your disease.

And there’s a couple of reasons for this.  There’s nothing wrong with obtaining imaging, but similar to following the blood count, if your white count is elevated or if they find a small lymph node, either on physical exam or on imaging, it doesn’t mean that people would be treated right away.  So, essentially, you would still be on active observation and monitoring.

So, the routine use of CAT scans would not be standard of care because then we would just be imaging people who may have some small lymph nodes but otherwise don’t need any treatment and unnecessarily expose them to additional radiation if they don’t need it.

I think any symptoms that are concerning should prompt imaging.  Clearly, if somebody’s having, even if it’s not related to the disease but having some sort of complaint that warrants imaging, that should be discussed with their physician team.  Again, if somebody is curious if their disease has come back and is concerned about something, I would definitely relay this to your team.

But the routine use of imaging just to say the disease has come back, if you otherwise wouldn’t need treatment, because remember, some people, their disease can come back but then can be monitored still for a very long period of time.  So, again, just a routine image.  We don’t want physicians to treat somebody just if the disease has come back because if they’re otherwise without symptoms but have tiny lymph nodes or a mildly elevated white blood cell count (WBC count), but their hemoglobin (Hb) and their platelets (PLT) are okay, we wouldn’t want somebody to get treatment just because their disease has come back.

Remember, this is a chronic disease.  At some point, it may come back. Thankfully, you said you’re a CLL survivor, so congratulations!  But we would otherwise still monitor your disease.  So a physical exam is important, and your blood counts are important; and again, if there is something concerning, and the physician is concerned that maybe there’s some big bulky lymph nodes because they feel something on your exam and want to check if something interiorly also is big, then, of course, getting a CAT scan or an MRI is prudent.  But otherwise, just to do routine imaging to say the disease has come back without otherwise needing treatment is not recommended.

Thank you so much for your excellent question.