Why should the CLL patient not just follow the doctor's judgement to get a CT when ordered? There is admittedly a (milli?) gray area in arguing the question of need for CT scanning from any one given patient's situation. Since you, the patient with skin literally in the game, or caregiver, to be intelligently engaged as part of the decision process of whether or not to allow a CT scan, I offer these observations: Too often I read patient postings that suggest unwarranted use of CT scans most often right at the time of diagnosis and during a patient's period of W&W. This may be more prevalent in societies that have a pay per service health care system, such as the US but I suspect over use of CT scanning is most prevalent among doctors unfamiliar with CLL/SLL regardless of where in the world they might be. When you were diagnosed how many of you were sent to be CT scanned right away? How many of you asked the questions “Why is this necessary?” & “How will what you see, help you guide my care?” I had this happen to me and no, I did not ask these questions at first. CT scanning is not required for diagnosis of CLL. CT scans are not therapeutic. General oncologists who see few CLL/SLL patients in his/her practice and will likely order additional unnecessary CT scans during W&W not considering the utility of Ultrasound and MRI scanning.
Richter's Transformation (RT or RS) is a dreadful but infrequent (~5 to10%) complication of CLL that becomes a fast growing and often deadly Diffuse Large B Cell Lymphoma (DLBCL) that is best caught early, so is this a rationale for early or frequent CT scans for all CLL patients? Since RT can appear suddenly and is a rapid growth Lymphoma, one needs to ask this question of their Onc.: “How frequently would a patient need to be scanned for an early warning of Richter's?” A CT scan cannot differentiate early RT from SLL. In the case of SLL where CLL cells manifest primarily in the lymphnodes, a CT scan is useless to distinguish between SLL, MZL or MCL which requires biopsy and molecular diagnosis.
There is a scanning case to be made involving discovery of markers that suggests a patient who may transform to the dreaded Richters (DLBCL). In the presence of markers such as 2p gain,TP53, NOTCH1 activation, and disruption of CDKN2A/B along with rapid node growth and rising LDH (lactate dehydrogenase). The FDG-PET scan has use in locating optimal node location for biopsy. paper on FDG-PET note limitations: <http://bloodjournal.hematologylibrary.org/content/123/18/2749.full.pdf+html> <http://tinyurl.com/o2punn3>
Clearly, the CT scan is a useful tool but needs to be used judiciously and appropriately so if your doctor offers you a convincing reason for a CT-scan then go for it, just don't go for it because it is ordered for you without being given a convincing reason. Challenge a reason such as “We need to see the internal nodes that can't be felt or seen” as to its clinical usefulness. the younger you are when DXed the more likely you are to have more CT scans ordered and accumulate more radiation damaged DNA while dancing with the Bear. Make'm count! Are you unsure whether to follow your Doc's orders to get a scan...? then ask for a second opinion from a CLL expert if at all possible. I know Dr. Byrd, CLL specialist at the James (OSU) is concerned by CT scan overuse and is conservative with regard to ordering.