I was diagnosed with CLL in 2003 and have no symptoms. My white cell count is about 120 and my platelets are at 290. My oncologist wants me to take Rituxan to get the counts down. I do not have an enlarged spleen and have not gotten sick. I have been told by my primary doctor that you should treat the symptoms not the counts. How do I get my oncologist to understand this?A.
CLL or, chronic lymphocytic leukemia is the most common adult leukemia. The average age of diagnosis is 65 to 67 years of age, although it is diagnosed in younger adults as well. It is one of four main types of leukemias. Because it is a chronic disease people can go years without treatment, so it is important to monitor the disease for any changes.
It appears you are struggling with different medical opinions. Your doctor suggests focusing on symptoms while your oncologist believes that the elevated counts indicate it is time for treatment. This is a common struggle for patients – what to do when you receive differing medical opinions? There is often uncertainty in which is the best option, and ultimately the decision rests with the patient.
Doctors can suggest, strongly sometimes, treatment options that patients do not feel comfortable with. When that happens it is helpful to open up a dialogue with your doctor where you can explore the rationale behind his/her thinking and you can express your concerns. An open and honest relationship with your health care team (often referred to as a partnership) is important. For many patients this additional knowledge helps them make an informed decision. For oncologists and other members of the health care team, it lets them know about what is important to the patient and how they want to approach his/her disease.
Here are a few additional resources addressing CLL treatment and patient/doctor communication:
- The National Cancer Institute’s Chronic Lymphocytic Leukemia (CLL) Treatment Summary
- CancerCare’s publications, “Doctor, Can We Talk?” Tips for Communicating With Your Health Care Team and Your Health Care Team: Your Doctor is Only the Beginning