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Advocating for Yourself Following a Blood Cancer Diagnosis

When I was diagnosed with chronic lymphocytic leukemia, I was determined to keep living my life.

By Leslie T. and AstraZeneca
Headshot of a woman.
Leslie T.  |  Credit: Courtesy of Leslie T.

Throughout my life, my physical health had always been good, which was something I took for granted. I cared for myself physically and mentally by spending time outdoors and loving my work as a full-time pastor at my church in Ohio. So, I was taken by surprise when I visited my primary care doctor in November of 2006 for a routine annual exam, and my labs showed a high white blood cell count.

My doctor referred me to a hematologist-oncologist for further testing. My thoughts immediately went to the worst-case scenario, and I began researching potential conditions I might have. A few weeks later, I was diagnosed with Stage 0 chronic lymphocytic leukemia (CLL) at the age of 47. "This is the laziest form of leukemia you could have," my hematologist-oncologist said. "It will probably be about 20 years before you need treatment." Hearing that was a relief.

As I talked to my oncologist and dove into doing my own research, I learned that according to the American Cancer Society, CLL is a type of cancer that starts in bone marrow cells but then moves into the blood. It is the most common leukemia in older adults, and the average person's lifetime risk of getting CLL in the United States is about 1 in 175. Many people with CLL don't experience symptoms for at least a few years, which is exactly what happened to me after receiving my initial diagnosis.

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As a Black woman, I consider myself fortunate that my CLL was caught so early. According to the American Journal of Hematology, CLL patients in minority racial groups often have poorer prognoses than Caucasian patients for a variety of reasons, including not seeking medical attention early enough. This can result in Black patients being diagnosed at later, and more symptomatic, stages of disease.

Soon after my diagnosis, I turned to a support group led by The Leukemia & Lymphoma Society to connect with other people with blood cancer and learn more about CLL. The group was very helpful and gave me actionable practices and tools to apply to my life. I maintained regular oncologist visits during the "watch and wait" (known as the active surveillance period) where we monitored my disease and used techniques like focused breathing when my nerves kicked in during doctor's appointments. I was mindful of potential infections and washed my hands frequently, but otherwise continued my work, physical activities and social life undaunted by CLL. I also turned to my church community and leaned into my faith — which helped me shift my perspective and not overthink.

A couple of years after my diagnosis, I began to feel unusually tired. I couldn't walk a mile without getting exhausted. I went back to my doctor where I learned I was extremely anemic and needed an immediate double dose of red blood cells. This was the first time my CLL symptoms affected my day-to-day life.

But that experience didn't stop me from being active. When I turned 50, The Leukemia & Lymphoma Society was hosting a trip for members interested in participating in a marathon in Alaska — an opportunity that would check two items off my bucket list. I asked my doctor if I was healthy enough to go, and he told me to "plan for it, train for it" — so I did. I had another blood test a month before the race, and surprisingly my numbers dropped as opposed to going up. I walked the marathon in Alaska, proving to myself I was still capable of such physical feats! After the race, my doctor reassured me, "I will never tell you that you can't do anything." I continued walking and hiking for over a decade while my CLL remained stable, and I stayed in the active surveillance period.

I moved to California in 2015 and found myself in the emergency room after my abdomen had become red and painful to the touch. Diagnostic tests revealed my spleen was enlarged, and my diagnosis was updated from Stage 0 to Stage 2 CLL. In addition, I was experiencing swollen lymph nodes and a high white blood cell count.

Despite these symptoms, I didn't dwell on my condition. I believe that CLL is something that doesn't have to have a negative impact on my life, and I continue seeing my oncologist regularly. As of now, nearly 20 years after my initial diagnosis, I haven't had any further treatments for CLL beyond two blood transfusions for anemia.

I recognize these circumstances are my own, and other people diagnosed with CLL will have different experiences. However, I feel my story can potentially help others, especially other Black women as our stories are less common. The risk of developing CLL is lower for women than men, and the incidence rates of CLL are 5.1 per 100,000 in white patients and 3.2 in Black patients. So, as a Black woman with CLL, I want to share my story to encourage others who look like me to say to themselves, "This may be something I should talk to my doctor about."

I recommend that anyone experiencing symptoms should seek support from and be open with your doctor. Stay positive, advocate for yourself and remember to take care of your mental and emotional health throughout your experience with CLL. Life is a journey, and we're along for the ride.

For more information about how to manage your mental health while living with CLL, visit UnderstandBloodCancer.com

AstraZeneca
By AstraZeneca

AstraZeneca (LSE/STO/Nasdaq: AZN) is a global, science-led biopharmaceutical company that focuses on the discovery, development, and commercialization of prescription medicines in Oncology, Rare Diseases, and BioPharmaceuticals, including Cardiovascular, Renal & Metabolism, and Respiratory & Immunology. Based in Cambridge, UK, AstraZeneca operates in over 100 countries and its innovative medicines are used by millions of patients worldwide. Please visit www.astrazeneca-us.com and follow the Company on social media @AstraZeneca.

Leslie T. is a full-time pastor currently living in California. Her writing aims to inspire others to advocate for themselves and stay positive following a medical diagnosis. Read More
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