Patient story
Anna.
Six years in. Living with watch & wait.
Anna is 50 years old. She got a Chronic Lymphocytic Leukemia (CLL) diagnosis when she was 44 years old. After some regular blood tests, her physician found some unusual indicators and referred her to a hematologist. After giving her the diagnosis, her hematologist explained that no treatment is recommended for the time being. Instead, he suggested regular appointments for medical check-ups and lab tests, which is called active monitoring or Watch and Wait. Anna sometimes worries because she is not taking any treatment despite having a chronic disease. She also worries about the course of CLL and how things will be in the future. However, she feels that CLL has not changed her everyday life in any way and this helps soften her feelings of anxiety.
Anna’s path so far
2 stagesStage · Diagnosis
Diagnosis
You may have received a CLL diagnosis quite unexpectedly, following a regular check-up or upon medical examinations for certain symptoms. The diagnosis may have come as a total surprise to you as you may have never felt ill before and had no reason to suspect the disease. Every person has their own story.
In any case, the diagnosis might seem upsetting and scary at first. Take your own time to process the new information and what it means for you. Every reaction is different and that’s totally okay.
- What does “Chronic Lymphocytic Leukemia” mean as a term?
- What is one experiencing when they are diagnosed with it?
- What should you expect in the future?
- How can you deal with the psychological effects of your diagnosis?
Personal stories
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“At first, when they told me I have leukemia I wasn't very well...It was out of the blue (…) the first thing I remember asking the doctor is whether it is contagious because I have children, and grandchildren (…) I was a mess, I was in my room, I wouldn’t get out, the whole family was by my side. Yet I slowly got over it and I started living life as I normal would”. (Maria)
Podcasts
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Diagnosis Podcast in English
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Diagnosis Podcast in Greek
Stage · Watch & Wait
Watch & Wait
Many people diagnosed with CLL do not need treatment right away. Instead, your physician will recommend regular check-ups and lab tests — a phase called active monitoring, or “Watch and Wait.” It can feel strange to live with a chronic condition without treating it. That feeling is shared by almost everyone in this stage.
- Why is treatment not started immediately?
- How often will I be monitored?
- What symptoms should prompt me to call my physician?
- How do I manage the anxiety of waiting?
Personal stories
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“I am worried about the future, I don’t know what’s coming for me and I don’t know much regarding my own case, what happens next when it will get much worse, what therapy will I get, what treatment. I am not sure whether it is a good or a bad thing that I don’t know, but it stresses me out, for sure it does make me anxious, that I have no knowledge of what’s coming for me.” (Nikole)
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“There are moments that you are inevitably thinking of [your diagnosis] and you wonder: “I don’t know what’s coming after”. Not knowing is the worst part. Ι say to myself that I am fine now, but what can it [CLL] cause in the future? Because I don’t know exactly what the outcome will be. (Andrew)
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In the beginning my family was shocked, but they didn’t believe me because I didn’t have something serious and I didn’t need treatment. They were thinking that I might have something serious and I lie to them”. (Mike)