Chronic Lymphocytic Leukemia: When Blood Cancer is Uncommon

They diagnosed me with chronic lymphocytic leukemia at age 37. I was barely familiar with leukemia. I certainly had never heard of this form of the disease.

A long series of words I'd never heard before

My initial thought was that, like most cancers, it was just a big word that was foreign to me. When the doctor comes in to tell us about our diagnosis, it's nothing like the movies. We don't hear that simple term and straightforward explanation that's wrapped up all nicely in a bow. How I wish!! LOL!!

No, it's usually a long series of words that we have never heard before, followed by treatments we have never heard and medicines we can neither read nor pronounce!

So... that is what happened to me. Other than explaining that my white blood count was off the charts, I had no clue what was happening to me. So, I started researching!

So, what now?

As I dove into research about CLL, I quickly discovered why I hadn't heard of it. It wasn't just because it was a complicated medical name that was foreign to me. It was because it was not a type of blood cancer that was well-known or widely discussed among African Americans in my age group.

Chronic lymphocytic leukemia is most frequently diagnosed in older Caucasians, mostly between the ages of 40 to 70. Statistics showed it was a little higher in men ages 60 to 70. There I was as an African-American woman under 40, diagnosed with stage 3 CLL.1

There was little specific information for me to dig into. I was so lost. I didn't exactly fit in most places. It was a baffling feeling. It's like trying to apply for a job but not being able to check most of the boxes because all yet none applies to you.

Big cancer, little me

After several months of asking questions, Googling, and doing tons of research, I was exhausted. More drained than the fatigue I was experiencing. This was overwhelming! I just wanted simple answers, and there didn't seem to be any. Everything for chronic lymphocytic leukemia seemed to have more than one answer.

I kept being told that it is so uncommon for me to have CLL being under the age of 40. So, of course, I had more questions than my doctors often had answers. That can be immensely frustrating. I am grateful to my hematologist! She's been a blessing, but she still had to do some research.

While my form of leukemia is chronic and at first my doctor used the watchful waiting approach, I found out why it affected me differently as a younger Black woman. African Americans under 40 have a shorter survival rate. Even with CLL, it's a higher risk of not surviving beyond 5 years. We also have a higher risk of dying from CLL complications within 5 to 10 years. So much for it being chronic. LOL!2

It's your life. Take it personally!

It's been 8 years since I had the discussion with my doctor that sent my head spinning. I learned that it's not enough to just hit Google with the first thing you hear. That may not be the information that saves your life. In fact, that may do the opposite.

An internet search is not enough research

If I just looked into general CLL information, I would have a lot of information that didn't apply to me and wouldn't help me at all. Your age group, your ethnic background, your environment, etc. – they all matter. It's important to learn about what applies to YOU. You are fighting for your life! Take it personally, and make it personal.

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