Learning about Leukemia
- Devoted teacher Bethan Cawley was diagnosed with chronic lymphocytic leukemia (CLL) after suffering from a “terrible sore throat” that wouldn’t go away. Now, she’s urging others to take “seek advice” when they think something is wrong with their bodies.
- Chronic lymphocytic leukemia (CLL) is a slow-growing cancer, so it often doesn't need treatment right away.
- Leukemia is a type of blood cancer. Symptoms vary depending on the type of leukemia, but general symptoms for the disease include: Fever or chills, persistent fatigue, weakness, frequent or severe infections, losing weight without trying, swollen lymph nodes, an enlarged liver or spleen, easy bleeding or bruising, recurrent nosebleeds, tiny red spots in your skin (petechiae), excessive sweating as well as bone pain or tenderness.
- Being your own advocate can be key to coming to a correct cancer diagnosis and obtaining the best treatment possible while dealing with a diagnosis.
Cawley began having a “terrible sore throat” that wouldn’t go away in April 2015. It only got worse and she eventually went to her doctor who tried to persuade her to take some time off from her school teaching job. Still, Cawley was not convinced.
Read More“I was a little surprised and asked why, to which she responded that she just wanted things checking out,” Cawley said. “I asked her if she thought I had glandular fever as I had had it as a child and I must admit that my sore throats were pretty awful.
“It felt like I was swallowing over glass and my glands in my neck were enlarged.”
Cawley “definitely didn’t take any time off work,” but let her doctor who also noticed her lymph nodes in her neck were “quite enlarged” commence with more blood work.
Her next appointment was the following Friday, and she planned to go alone during her lunch break before physical education class. She considered it “a waste of time for [her husband to come] as there was nothing wrong.”
“Well, what an hour faced me!” she said of the appointment. “An examination by a doctor who took my history. He examined my neck and I was very aware of the lumps and bumps, but I'd had them for a while and they always popped up if I was run down.”
The doctor also checked to see if her lymph nodes were swollen under her armpits or groin. Much to Cawley’s surprise, they were. That’s when this doctor asked her to stay for more blood tests.
“I said no as I had a PE lesson to teach, but he was persuasive and said they wouldn't take long and the results would be instant,” she explained. “I complied and then was asked to go and see the consultant. I was very jokey and asked why, reminding him about PE!”
But once Cawley entered her consultation room, reality started to hit.
“I was stunned, and sudden realization dawned on me that there could be something wrong,” she said. “I was examined again and asked if anyone was with me. I was scared. I was also awkward, saying I had to get back to school.”
She went back to school “shocked” and “drowning in a sea of untapped emotions.” Her next tests were carried out over a three-week period, and she eventually got asking her to come in for another appointment. This time, though, they made sure she didn’t come alone.
“I felt sick but kept myself jovial and positive,” she said. “The next 18 hours dragged on, but my husband came with me. The consultant welcomed me and cut right to the chase. I had blood cancer which would need chemotherapy. It was non-Hodgkin lymphoma, which would need to be treated straight away.”
At that point, her biggest concern was her son’s upcoming wedding, but things would get even more confusing after her appointment the next day.
“We relayed the information given, but we were then met with shock number two as we had been told incorrect information,” Cawley explained. “My condition was a sub condition of non-Hodgkin called chronic lymphocytic leukemia. It was incurable, though treatable, and treatment wouldn't commence until it was warranted, until I was ill enough, which could be many years.”
Chronic lymphocytic leukemia (CLL) is a slow-growing cancer, so it often doesn't need treatment right away.
"The most important thing to focus on, for a patient who's been diagnosed with CLL, is that this is what we call an indolent leukemia. It's slow growing," Dr. James Gerson, hematologist at Penn Medicine, previously told SurvivorNet.
RELATED: How BTK Inhibitors Can Improve the Treatment of Chronic Lymphocytic Leukemia
Cawley was initially relieved to hear the updated diagnosis because she figured she would be well for her son’s wedding. Still, new questions eventually popped up in her head.
“The underlying question was: What had I been told?” she said. “I was told it was a curable and treatable lymphoma, but now I was facing an incurable leukemia; this still confuses and upsets me.”
“I looked well and felt okay and just could not accept the diagnosis. I put on a very brave face but every time I looked in the mirror I was confused. How could I have cancer?”
Fast forward ten months, and Cawley’s everything changed dramatically. A lymph node in her neck had swollen to a huge size, and she was rushed to an emergency appointment. That’s when she underwent treatment for the first time.
“Treatment was a relief, as something active was being don,” she said. “Chemo wasn't without its ups and downs and a new vocabulary came to be, neutropenia being the bane of my life! Life became small and confining but it felt positive, as after the first round my lymph nodes had gone down substantially.
“It felt like a real fight but in a positive way. 'I can do this' was my mantra. I felt determined.”
The first round of treatment gave her five years of remission, but she found new lumps in her neck a year ago. After experiencing dizziness, bruising and fatigue, Cawley’s doctor’s confirmed she had relapsed in May of this year. She’s now eight weeks into treatment with the drugs venetoclax and rituximab, and doctors are monitoring nodules they’ve found in her lungs.
“I am unable to work throughout the treatment, but I am enjoying the summer sun as well as binge watching series on Netflix!” she said.
Now, as she continues her fight against the disease, Cawley wants others to be aware of the symptoms of leukemia and seek medical help whenever you’re concerned.
“It is also so easy to ignore the signs and put them down to other things, or even make excuses for them,” she said. “Being aware of a whole picture can prompt people to go and seek advice.”
Understanding Leukemia
Leukemia is a blood cancer that develops when the body produces large quantities of abnormal white blood cells. These cells prevent the bone marrow from producing any other type of cell including red blood cells and platelets.
"One cell got really selfish and decided that it needed to take up all the resources of everybody else, and, in doing so, took up space and energy from the rest of the body," Dr. Nina Shah, a hematologist at University of California San Francisco, explained.
What Is A Blood Cancer? How Is It Different?
In a more general sense, blood cancer means that your bone marrow is not functioning properly.
"And when your bone marrow doesn't function correctly, it means that you can have something happen to you like anemia," she said. "Or you can have low platelets, which makes it possible for you to bleed easily. Or your immune system is not functioning correctly."
Symptoms of leukemia can vary depending on the type of leukemia. Common signs and symptoms of the disease include:
- Fever or chills
- Persistent fatigue, weakness
- Frequent or severe infections
- Losing weight without trying
- Swollen lymph nodes, enlarged liver or spleen
- Easy bleeding or bruising
- Recurrent nosebleeds
- Tiny red spots in your skin (petechiae)
- Excessive sweating, especially at night
- Bone pain or tenderness
These signs and symptoms are not exclusive to leukemia, but if you notice them or any other changes to your health you should see your doctor promptly.
Advocating for Your Health
As we’ve seen in the case above, it's always important to pay attention to the changes happening to your body and insist that medical professionals investigate.
You have every right to insist that your doctors investigate any possible signs of cancer, other avenues for treatment or the potential of a different diagnosis. And if you simply don't know what's causing a change to your body, you should still seek professional help. You never know when speaking up about a seemingly unimportant issue can lead to a very important diagnosis cancer or otherwise.
Be Pushy, Be Your Own Advocate… Don't Settle
"Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn't work, what the next plan is," Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. "And I think that that's totally fair. And me as a health professional that's what I do for all of my patients."
In a previous interview with SurvivorNet, April Knowles explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Unfortunately, that dismissal was a mistake. Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn't feel right.
I Wanted My Doctor To Like Me, Then He Missed My Breast Cancer
"I wanted my doctor to like me," she said. "I think women, especially young women, are really used to being dismissed by their doctors."
Figuring out whether or not you actually have cancer based on possible symptoms is critical because early detection may help with treatment and outcomes. Seeking multiple opinions is one way to ensure you're getting the care and attention you need.
Another thing to remember is that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it's essential to talk with multiple medical professionals.
Learn more about SurvivorNet's rigorous medical review process.