If you’re living with a chronic condition, it can sometimes seem easy to compare your experience to another’s story and suggest that one is “better” or “worse” than the other. This is something we, as the chronic condition community, do often; we see a loved one going through a difficult experience and decide that our case is the “better” one … so we shouldn’t complain. Especially when it comes to cancer, there are so many different types with varying symptoms, treatment options, survival rates, and other differentiating factors. But the truth is, every cancer case can be scary, confusing, and full of unknowns for the person living through it, and every situation deserves to be treated with the same level of care, love, respect, and support.
In the last couple of years, the pandemic has disrupted a lot, including cancer care, but the need for people living with chronic myeloid leukemia (CML) to receive proper attention remains just as important as ever.
According to the Leukemia & Lymphoma Society (LLS), CML occurs when a genetic change takes place in an early version of stem cells, the cells that make red blood cells, platelets, and most types of white blood cells. This change forms an abnormal gene called BCR-ABL, which produces an abnormal protein called the BCR-ABL1 which leads to the development of CML cells. The leukemia cells grow and divide, building up in the bone marrow and spilling over into the blood.
In recent decades, CML has often been labeled as the “good cancer.” However, not only does this outlook minimize the reality of the person who is living with CML, but it also diminishes the importance of remaining proactive about treatment. Someone who is living with any type of cancer may already feel hesitant to disclose every symptom, question, or concern to their doctor. Add the narrative that CML is a “good cancer,” and it may make some feel as if they’re “complaining.” In reality, you deserve to be heard and validated for your experience regardless of your diagnosis.
Nikki Yuill from The Leukemia and Lymphoma Society spoke with Dr. Ehab Atallah, MD, from the Medical College of Wisconsin, to get his opinion on why CML may be deemed as a “good cancer” by some. One reason is that the prognosis and medication options have greatly improved in the last few decades. “Over the last 20 years, with advances in treatment, patients and health care professionals have seen CML become more manageable. Based on data available from 2010 to 2016, the estimated five-year cancer survival rate for those with CML is 70 percent,” he said. He also reiterated the importance of continuing to engage with the treatment, monitor responses to it, and notice major milestones toward remission.
When it comes to anyone living with CML, Dr. Atallah says the goal is always to see the number of leukemic cells in the blood go down and help the person get back to their day-to-day life. However, just like anything else, people who live with CML all have different experiences. What works for one person may not work for the other. Some people may notice treatment side effects that disrupt their daily life, while others may not encounter any at all. “In some cases, a [person] may be on a medication that was once working, but the number of leukemic cells starts to plateau or even go up instead of down. This may be due to drug resistance, which happens when cancer cells no longer respond to a medication,” he explains.
While the advancements in care are definitely worth celebrating, it’s still important to remain diligent with health management for these reasons.
It’s also crucial for you to fully share what you’re going through with your doctor. As mentioned above, Nikki Yuill shares that The Leukemia and Lymphoma Society hears about a lot of people who aren’t fully disclosing everything during doctor visits. In addition to not wanting to sound like a “complainer,” Dr. Atallah says that many might feel as if they’re supposed to “work through it” when it comes to cancer. While side effects are common and to be expected, it doesn’t mean that a person should struggle through them without support from their doctor.
Dr. Atallah also encourages his peers to ask more questions too, knowing that some people may not know where to start when discussing their experience with CML.
Regardless of whether you view your cancer as a “good cancer” or not, always speak up about what you’re experiencing, whether it’s to loved ones, friends, and especially your doctor. You deserve to be supported, cared for, and validated.
To learn more about CML and find additional resources, please visit WhatAboutMyCML.com.
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