Disclaimer: To protect patient privacy, this question has been edited slightly to omit identifying details.
A Patient Power user with chronic lymphocytic leukemia (CLL) asked: “I have been on watch and wait for five years. My main symptoms include enlarged spleen, enlarged lymph nodes above and below the diaphragm, and some fatigue.”
This patient goes on to say, “My blood counts have been stable, although I have low platelets. I undergo [computed tomography (CT)] scans every six months and blood work every three months. My oncologist told me, ‘When your symptoms become bothersome, we will have to treat.’ In other words, I will have to let my oncologist know when my symptoms are interfering with my day-to-day life. Is this the usual plan as to when to start treatment?”
Expert Response
This is, in fact, typical.
“It is very usual, and definitely recommended, to wait until the CLL is starting to cause you problems before treating it,” said Kerry Rogers, MD, from The Ohio State University Comprehensive Cancer Center – The James.
“Sometimes the problems are things the oncologist notices, like low blood counts,” Dr. Rogers said. “Or it will be things you might notice, like rapidly enlarging lymph nodes.”
The frequency of your testing also sounds normal. “It is normal for people to be seen every three or six months, depending on how much things are changing for them,” she added.
Although Dr. Rogers admitted, “I usually do not do CT scans unless there are symptoms, since people are in observation for a long time and it generally does not help,” she also specified that this decision really “depends on the individual and what is happening with them.”
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