“The Good Cancer” vs “a Better Cancer”: Living With Chronic Lymphocytic Leukemia

Amanda C. Ginter, PhD, Towson University, Towson, MD

Lydia Tippett, MS, Montgomery County Public School

Emily Armant, MS, CCLS, Robert Wood Johnson University Hospital

Amanda Agate, MS, CCLS, St. Joseph’s Health

Background: Chronic lymphocytic leukemia (CLL) differs from other cancers with respect to treatment and prognosis.

Objective: To understand how people describe their experiences living with CLL.

Methods: A cross-sectional phenomenological study with a life course theory and health literacy framework was employed. Thirty-eight participants took part in semistructured interviews.

Results: Themes included reactions to diagnosis, gathering information about CLL, managing mental health, reactions to the phrase “good cancer,” the liminality of watch and wait, how to plan for the future, living beyond CLL, religious and philosophical frameworks for responding to CLL, and comparing CLL with other stressors.

Conclusion: CLL’s unique properties may lead to providers and patients conceptualizing the prognosis differently. These findings present new information about the needs of people with CLL, with potentially transferable implications for people with other chronic illnesses. Information should be shared with providers about how to discuss a CLL prognosis sensitively.

Chronic lymphocytic leukemia (CLL) survival rates have increased in the past several decades.¹ However, CLL still presents multiple challenges: treatment-induced fatigue and nausea, weakened immune systems, increased risk for developing other cancers, and diminished mental health.² The canon of cancer literature offers little on the well-being of people with CLL. The purpose of this study was to learn more about the experiences of people with CLL with respect to their physical and mental health, reactions to diagnosis, frameworks for meaning making, and plans for the future. By learning more about this group’s experiences, physicians and mental health professionals will be better equipped to support the psychosocial needs of patients and their families. Moreover, while CLL contains unique properties with regard to treatment and prognosis, there may be transferability to people living with other chronic health conditions.

Literature Review
Diagnosis and Treatment of CLL

CLL is the most common chronic leukemia.³ This cancer causes abnormalities in white blood cells that prevent normal functioning. Specifically, they affect the lymphocytes, which have the potential to build up causing swollen lymph nodes and lower immune response. Diagnosis for CLL often occurs through routine blood work; in other cases, individuals may present with symptoms (fatigue, enlarged lymph nodes) that warrant physical examination and bloodwork.⁴ CLL may also lead to other cancers, including skin cancer, breast cancer, and other blood cancers.^5,6

Unlike many other blood cancers and hematological disorders, CLL may not require immediate treatment upon diagnosis. The majority of patients are diagnosed at an early stage and are asymptomatic, hence not requiring treatment immediately.³ Only active or advanced disease (often evidenced by increasing white blood cell counts) requires treatment.⁷ Treatment for CLL depends on symptomatology (eg, swollen lymph nodes) and risk category (eg, intermediate or high risk based on the Rai stage).⁸ Treatment therapies range in price⁹; oral drugs may be especially effective but are more expensive than immunotherapies.^10,11 When patients do not yet require treatment, this period between diagnosis and treatment is known as “watch and wait,” which may last months, years, and in some cases, decades.⁷

Living With CLL

The extant research on living with CLL is limited to quantitative mental and physical health measures. People with CLL who experience cancer-specific stress are more likely to report higher levels of depression, anxiety, and fatigue.^12,13 Such fatigue may lead to decreased quality of life.^14,15 Along with fatigue, cancer-related stress is also associated with a decrease in mood, increased sleep problems, and lower overall mental health.¹⁶ People with CLL who had a psychiatric history, perceived a lack of social support, and reported low relationship satisfaction with their partners were found to experience higher levels of depression and cancer-related stress.¹²

Agency refers to one’s capacity to make decisions that transform their life course. Higher levels of self-efficacy regarding cancer treatment and symptom management are linked to higher quality of life.

Theoretical Framework

Life course theory (LCT) and health literacy were the guiding concepts of this study. The premise of LCT is that the human experience can be understood by examining the contexts in which individuals age, make decisions, and interact with others. This study used the LCT elements of time and place, timing, life-span development, and agency.¹⁷ The second concept was health literacy: individuals’ ability to seek, access, and act upon health information and services.¹⁸ Health literacy is a key tool in explaining leukemia outcomes and reducing disparities.^19-21

According to LCT, humans’ life experiences are determined by when and where they were born. In the context of cancer, time and place determine the lived experiences of diagnosis, treatment, and prognosis with regard to the quality of care and access to coping resources.^17,22,23 The sociohistorical context also determines one’s level of health literacy.²⁴

LCT posits that the timing of an event can determine the level of subsequent stress. Non-normative events typically create more stress because they are less anticipated. While CLL is more commonly diagnosed in older adults, younger adults (under 40 years) may also develop CLL. It is important to consider the varying perspectives and lived experiences of people diagnosed across the life span. Moreover, since people can live with CLL for years and even decades, it is necessary to examine how their experiences shift over time (life-span development).

Agency refers to one’s capacity to make decisions that transform their life course. Higher levels of self-efficacy regarding cancer treatment and symptom management are linked to higher quality of life.^25-27 The concept of agency is also highlighted in health literacy: individuals must believe they can take action, such as accessing information, that will positively impact their personal health.²⁸

Barriers to agency include the inability to understand medical forms, perceptions about treatment, and not using the same language as the medical team or forms.²⁹ The extent to which healthcare systems support patients’ health literacy is known as organizational health literacy.²⁸ Congruently, life course theory states that to best understand an individual’s experience, we must consider all the systems that surround them. This includes considering the quality of care medical teams provide them.

Research Questions

1. How do people with CLL make sense of their diagnoses in the context of their life stage?
2. How do people with CLL conceptualize the liminal space of watch and wait?
3. How do people describe their outlook on life following their diagnoses of CLL?

Methods
Research Team

The research team included an associate professor of family studies (first author) and 3 graduate students (second, third, and fourth authors) trained in qualitative methodology. The first author conducted recruitment and data collection. All authors participated in data analysis and contributed to the manuscript.

Data Collection

After receiving Towson University Institutional Review Board approval, the first author shared study information on social media, CLL support websites, and CLL information listservs. People 18 years and older living with CLL were invited to contact the first author to schedule a telephone interview. All participants provided written informed consent prior to enrollment in the study. Initial interviews lasted 35 to 90 minutes, during which the first author asked participants questions about their CLL experiences. The second interview was used for member checking and lasted under 30 minutes. The first author shared a short description of their findings and asked participants to state whether the description aligns with their lived experience. Data collection ceased when the first author determined saturation had been reached.³⁰

Data Analysis

Phenomenology guided development of the interview protocol, data collection, and data analysis. This method of data analysis focuses on the lived experiences of a group of people facing a particular phenomenon³¹; here, the phenomenon was living with CLL. The authors independently read each interview transcript and noted participants’ statements about experiencing the phenomenon of living with CLL. This inductive thematic analysis helped identify common threads across the data.³² Next, the authors identified meaning units, hereafter referred to as themes. The scrutiny techniques of word repetition, indigenous typologies, analogies, and similarity and dissimilarity (whether participants described experiences congruently)³³ informed the authors’ development of themes, as did assessing theory-related material. LCT- and health literacy–related material included participants’ references to age, developmental stage, the sociohistorical context of their diagnosis, frustrations with providers, and selection of providers.

Next, the authors developed textural descriptions (participants’ experiences) and structural descriptions (the sociohistorical contexts of participants’ experiences). After the authors had achieved congruence across their codebooks, the first author conducted member checks to determine whether the themes represented participants’ descriptions of their lived experiences. This included sharing a short description of the findings and then requesting feedback from participants. All participants stated that they felt the summary represented their experiences. This confirmation—that the authors had described the structure of the concept while also accounting for individual variation of experiences—is an essential step in phenomenological research.³²

Findings

Thirty-eight participants described their experiences living with CLL. There were 19 men and 19 women. All identified as White. The age range at diagnosis was 40 to 70 years. Time since diagnosis ranged from 3 months to 30 years (μ=8 years). The education range was high school diploma through doctorate, with the majority reporting a master’s degree (n=14). At the time of their interviews, 27 participants had begun CLL treatment and 11 had not.

Themes include reactions to diagnosis, gathering information about CLL, managing mental health, reactions to the phrase “good kind of cancer,” experiencing the liminality of watch and wait, how to plan for the future, living beyond CLL, religious and philosophical frameworks for conceptualizing CLL, and comparing CLL with other stressors. A manuscript on CLL social experiences is in preparation.

Reactions to Diagnosis

The CLL diagnosis elicited 2 types of reactions. Some participants expressed feeling complete shock as they were asymptomatic at diagnosis. Their CLL was usually detected during routine or unrelated blood work. Conversely, some participants said that the diagnosis confirmed their suspicions of an underlying health concern. They described experiencing unusual fatigue and sometimes enlarged lymph nodes, which prompted their physicians to order blood work. “In one sense I was relieved to finally know why I had been so tired for years. I knew something was wrong, and nobody was listening to me.”

Fifteen participants (39.5%) had never heard of CLL before their diagnosis and did not know what this diagnosis meant for them. One participant recalled:

The one cancer that has always struck me as “game over” is leukemia. I’ve always had this thing about leukemia—blood cancer. It’s pervasive, it’s incurable...so when I was told that I had CLL, I thought, this is it, it’s over. I’m done.

The CLL diagnosis elicited 2 types of reactions. Some participants expressed feeling complete shock as they were asymptomatic at diagnosis. Their CLL was usually detected during routine or unrelated blood work.

Identifying the Cause of CLL

Thirty participants (78.9%) described attempting to identify the cause of their CLL. Some felt that there was a hereditary component since they were aware of a family history of CLL or blood cancer. Sometimes participants were not aware of their family medical history until they disclosed their CLL diagnosis:

After I initially started telling the family that I had CLL, my mother told me her brother had a blood disorder. I called him. He said he had CLL.…Then he told me that their cousin had CLL.…I mentioned [to my doctor] that my family had some CLL. ‘Oh no,’ he said, ‘it doesn’t run in families.’ That seemed contradictory.

Three participants (7.9%) believed there had been an environmental exposure to products known or suspected to be carcinogenic. One participant stated: “My CLL is associated with my [military] service. I was exposed to Agent Orange, which is a factor in acquiring CLL.” Another participant reflected: “I would probably blame my CLL on environmental factors.…My husband has always used Roundup.” Another participant, who had worked at a gardening center for years prior to her diagnosis, said: “I was in the back office for the first 8 years. I sat within 10 or 15 feet of this huge sack of “weed and feed,” all kinds of herbicides and insecticides, and also Roundup packages.”

Gathering Information

Participants stressed the need to gather information about CLL subtypes and genetic markers. Five participants (13.2%) described waiting for and learning the results of their genetic tests as stressful as the initial diagnosis of CLL. “When I got the genetic testing back, that was traumatic. It was almost worse than the diagnosis. I kind of wish I didn’t know that.”

Participants also emphasized the need to work with a CLL specialist instead of a general oncologist. They referred to general oncologists as not understanding the latest research on effective treatments, genetic markers, and prognosis.

Sometimes the genetic tests provided participants with more optimism. One participant said: “Because I’m unmutated, I knew right away I would never need chemo for this. So I knew my markers weren’t great, but knowing I would never need chemo was wonderful.” Regardless of whether the test results evoked relief or stress for participants, most acknowledged the importance of learning as much as possible about one’s subtype. As one participant clarified: It is a very heterogeneous illness. If you meet one CLL person, you have met one CLL person. It’s hard not to compare yourself to others. Your illness is uniquely yours.”

Participants also emphasized the need to work with a CLL specialist instead of a general oncologist. They referred to general oncologists (and even those who specialized in hematology but not CLL specifically) as not understanding the latest research on effective treatments, genetic markers, and prognosis:

A hematology oncologist diagnosed me with CLL. He said it wasn’t anything to worry about. He didn’t seem very aggressive about it, and we were not pleased.…We found another hematology oncologist who did extensive testing and discovered I was a high-risk patient.

Another participant felt that general oncology providers were not keeping up with information about CLL:

Most general oncologists don’t understand what it is beyond the basics. They don’t see it beyond that. It would be nice if medical professionals would listen more to the patients they have with the disease and do research on their own. When I questioned my oncology office about the CLL [information] that was online, they knew nothing about it.

Four participants (10.5%) were concerned that switching to a CLL specialist would insult their current oncologist. One participant reflected:

I was told I should see a CLL specialist. I think I upset my old doctor because I think he thinks he’s one, but I don’t know if he qualifies as one or not. He’s good with lymphoma and leukemia, but he treats other cancer patients.…I think I offended him, but I went to [another hospital].

Seven participants (18.4%) identified a middle of the road approach: continue working with their oncologist but see a CLL specialist intermittently. As one participant said:

If you don’t see someone who follows this day-to-day, you could make a big mistake. I’m a believer in people going to see a specialist. He doesn’t have to treat you, but you have to see them and find out what’s going on.

Managing Mental Health

Ten participants (26.3%), especially those who had moved from watch and wait to needing treatment, described experiencing diminished mental health. One participant commented that the first 6 months postdiagnosis were very difficult, but after that things improved. When asked what was the turning point for him, he responded: “I think the Lexapro for one. And number two was just time. You just accept the diagnosis.”

Other participants attributed their acute stress to their previous experiences with cancer:

After a while, I was in shock and in grief, and I could not really come to terms with it. My mother had recently died a really ugly death from cancer. She had multiple myeloma. CLL is a cousin to that. So I was having a very difficult time coming to grips with it.

Six participants (15.8%) sought professional support to cope with their diagnosis: “So I got therapy. That was really helpful because I had to pay someone to help myself move on. There was no revelation. It was just processing.” One participant recalled a friend’s recommendation to see a life coach:

The life coach helped me to relax a bit more, kind of get in touch with my fear. My biggest fear was being quickly hospitalized and dying alone in the hospital without family around. That was the fear I needed to deal with.

Having the “Good Kind of Cancer”

All participants described the stress and frustration of being told they had the “good kind of cancer.” Participants generally acknowledged that their prognosis was better than many other kinds of cancers; still, there was a notable difference between their acknowledgment and then being told by a healthcare provider that they were fortunate.

I mean sometimes doctors will say, “well, you have the good cancer” [...] and maybe it’s coming from a good place, but it kind of minimizes CLL and kind of minimizes your concern about it in a way. So I mean, it’s a double-edged sword to say that. There is no good cancer. So to say that, it can be misleading. Plus, some people do have more aggressive CLL.

Twenty-six participants (68.4%) reported strong feelings surrounding this phrasing, with one participant even saying, “Don’t tell them it’s a good cancer. It’s the stupidest thing I ever heard.” Another participant shared: “Don’t let anybody tell you it’s the good cancer. I’m a nurse, and I don’t believe any cancer is good.” Participants also felt that the phrase “good cancer” did not account for the personal and social implications of a cancer diagnosis. One participant acknowledged the weight that a word like “cancer” brings. “I think when you use the words ‘leukemia,’ ‘cancer,’ you’ve done something major to the person’s psyche. Our first thoughts are ‘oh, no. That’s not good.’”

While most participants found the term “good cancer” problematic, 2 described finding solace in the wording. “Having a medical background, I know a lot of people are offended by being told it is ‘the good cancer.’ From my experience it was a better cancer.” Another participant stated:

I know some doctors say it’s the good cancer. I know that upsets some people, but I kind of feel like it’s kind of true. Back when I was getting diagnosed, I worried about not making it. Not living much more than a month or something. I looked at the worst case because I didn’t want to get my hopes up. When I found out it wasn’t that bad, it was a big relief.

The Liminality of Watch and Wait

Participants who spent time in watch and wait following their diagnosis often described this period as strange. As one participant remarked, “it’s not an instinctive concept.” Another admitted, “I know I need to get a better grip on this ‘watch and wait.’” Many participants had previously equated cancer with immediate treatment, so it felt unnerving to be told treatment was not yet necessary, and may never be required. One participant explained:

I was always taught “find it early, kick it out,” you know? When I couldn’t do anything about it, I was like, “oh no!” It was bad for my personality. It’s draining because every little thing that goes wrong with you, you question. You’re just on edge questioning a bump, a this, a that.

Even participants who went straight from diagnosis to treatment had observed the stressors that this liminal period created. Said one participant:

My situation was different because we didn’t watch and wait. From what I see in the Facebook groups, it’s frustrating to know that you have cancer and the doctor wants you to wait until it gets worse.

While most participants found the term “good cancer” problematic, 2 described finding solace in the wording. “Having a medical background, I know a lot of people are offended by being told it is ‘the good cancer.’”

Another participant remarked:

People can choose to treat watch and wait as a period where they kill themselves with stress, or they can understand that this is the new reality and at some point, you’ll need treatment. Then once you go into treatment, you do the treatment and then you have to let it go again.

Long-Term Planning

Eleven participants (28.9%) described the ambiguity of their prognosis as making it more challenging to anticipate or plan for the future. Younger participants were more likely to discuss the challenges of long-term planning. One participant remarked:

I am 40; I am not 60. Our kids are not grown or in college. That’s more complex.…[My wife and I] have talked about it. The output of the conversation has been financial planning, house planning, making sure I have a good diet. I don’t smoke or drink that much. I am trying to keep healthy. These are concrete things I can do. I make sure there are no loose ends as far as finances and try to live healthy.

Health Insurance

Participants also discussed the need for better health insurance and more life insurance. Another participant noted the insufficient coverage for drugs:

I’m on ibrutinib, and I have to be on this for the rest of my life. It’s $18,000 a month for a 30 day supply, and your insurance doesn’t even pick up half of that. My biggest thing is the cost of the medicine. Somebody’s got to put these pharmaceutical companies in their place.

Another participant mused:

I am on [my wife’s] insurance. I used to take that for granted.…I wish I had more life insurance. Not that my family wouldn’t have been okay, but they would have been more okay.

One participant who had previously served in combat commented: “There is a saying, ‘No one is an atheist in a foxhole.’ When you are at war, you get religion. I think I got a little closer to God after my diagnosis.”

For 3 participants (7.9%), CLL had derailed plans for retirement. After learning how much drugs and treatments cost, participants realized they would need to stay employed in order to access adequate health insurance benefits. As one participant explained:

I was a financial advisor for 3 years and I know how much healthcare costs and I think I’m going to have to work until I’m 65 to get the insurance. It sucks. It’s disappointing. I was on track to retire in 5 years. I don’t want to keep doing what I’m doing for another 10 years, and it’s harder and harder to find companies with good medical benefits.

Living Beyond CLL

Despite the uncertainty accompanying CLL, participants explained that one way they cope with their diagnosis is by maintaining their focus on living and enjoying life. As one participant stated, “I just vowed that I was going to not let CLL control who I was or what I did and how I responded.”

Postdiagnosis, more than half the participants reevaluated their priorities and made changes to reflect their values. One participant explained their desire to focus on family:

I moved to be closer to family, I was building my own house, and I started running a small nonprofit.…I wanted to spend more time with my family. I wanted to make sure I could take my kids to school and spend time with them when I get home.

Twenty-seven participants (71.1%) explained that having CLL has allowed them to appreciate that life should not be taken for granted. One person said:

Live your life, don’t let it define you, be good to your body, surround yourself with people who are loving and positive, and don’t have toxic things in your life or people in your life.

Religious and Philosophical Frameworks for Conceptualizing CLL

Participants in this study identified as Jewish, Catholic, Protestant, and Latter-Day Saints. Some self-identified as spiritual but not religious. Most participants referred to a particular religion or a general spirituality that helped them make meaning of their CLL.

Thirteen participants (34.2%) commented that they had been religious before their diagnosis, which they said helped them cope. One of the most beneficial aspects of religion is that it allowed participants to relinquish control and trust in a greater “plan.” One participant advised:

Don’t bother giving God instructions, just report for duty. You’ve got to let go of some control. It’s an illusion. Accept that you have to trust other people right now, and trust God to get you through this.

Another participant took comfort in “knowing that God is with me and he has a plan. If his plan means that he takes me sooner than what I have envisioned, that will be okay, and I will be with my parents again. And that it will be okay. And just have faith that he continues to have a plan for me that is the best for me.”

Five participants (13.2%) described being less religious before their diagnosis but growing in their faith afterward. One participant who had previously served in combat commented: “There is a saying, ‘No one is an atheist in a foxhole.’ When you are at war, you get religion. I think I got a little closer to God after my diagnosis.”

Religion also provided participants with perspective regarding the impermanence of life. One participant stated, “Nothing is a given. Our time on Earth is not indefinite.” Another said, “Well, everyone’s going to die. I have faith that whatever is to be my path in life is to be my path in life, and I don’t need to worry about outcomes.” This perspective was particularly true for participants whose religion espouses life after death. They found comfort in believing that death “might be the end of life on Earth, but not the end of life.”

The power of prayer was another way in which religion helped participants cope. They described the personal act of praying as providing spiritual comfort. One participant stated, “I do believe and pray. I prayed from the beginning and am still praying. I do feel praying helps. I believe in having a belief in God and belief that if you pray you will be helped.” Another participant said, “I can say my prayers, and I believe that prayer is a support system for people who are ill.”

Additional Perspectives

People who did not identify as religious or spiritual developed their own frameworks for conceptualizing their CLL diagnosis. One person who identified as agnostic said, “Nobody gets out alive. Everybody has to die from something. There you go. As long as it doesn’t hurt too much.” Another person reflected:

When I first got CLL, I’m not religious, but I found some wisdom in Buddhism about life being about suffering and that kind of stuff.…Then I read a book about how your body makes so many different new cells every day. If it makes a mistake, it’s not anyone’s fault. That’s how I look at it.

Comparing CLL With Other Stressors

Most participants compared their CLL experience with other cancers, illness, and life stressors and found themselves to be fortunate by comparison. As one participant said, “This is not a ‘congratulations, you have 6 weeks’ [situation] like a friend’s father found out this summer. That’s a different game.”

Other participants noted their appreciation of recent medical advancements that improve outcomes for CLL patients. One participant pointed out:

In terms of time period, this has been a fortunate time to get this disease. When we were first getting into this, a lot of people were dying at the 5-, 6-, 7-year mark. I haven’t.

Another participant said:

I would advise [people newly diagnosed with CLL] to be optimistic. The drugs today are night and day from what they used to be. Survival chances today are a high percentage compared to years ago. I would tell them some of the realities of treatment, but look at it as a goal that you have steps along the way. You reach your goal, and that’s where you have your remission. That’s a good way to look at it. There’s an end in sight. You cross that treatment off.

While most participants drew comparisons between CLL and other health issues, 2 participants noted national tragedies or global conflict that occurred before and after they developed CLL. One participant commented: “On the day that I got the call about the CLL was the day of the Sandy Hook Elementary shooting.…Comparing that to the families losing their children in a traumatic way, I thought my experience was nothing.”

Another participant compared his chronic illness to warfare:

I was part of the [combat zone]. It was psychologically relentless.…It was a constant unknown. This is not as dramatic, but it is the same kind of unknown. I can feel a lymph node or two in my neck a little bit. I know what it means. It isn’t confronting me in my face like a fire fight that is 30 seconds long for the rest of your life, but it is there. It grinds on you. That is a comparison I have made to myself. It is a long-term stress you learn to live with. It is never going away. The deployment eventually goes away. Even if the drugs allow me to live another 40 years, it will still always be there.

One participant concluded that things could always be worse:

Everyone has their trials. This is not just me or people with CLL. My dad would say, “If everybody in the world put all their problems together in a big pile, and you were given a portion equal to everyone else’s, you would want your original problems back.” I believe that. It can always be worse. That gives me great comfort.

People developed their own frameworks for conceptualizing their CLL diagnosis. One person who identified as agnostic said, “Nobody gets out alive. Everybody has to die from something. There you go. As long as it doesn’t hurt too much.”

Discussion

This exploratory study on the experiences of people living with CLL is the first to provide perspectives on watch and wait, making meaning out of one’s CLL, and planning for the future. Phenomenological analysis of 38 participants’ descriptions of their lived experiences has proffered new findings on the reactions, stressors, and philosophies for this population.

While participants said that the phrase “good cancer” is insensitive, most also acknowledged that their prognosis was far better than other illnesses. Participants attributed this to the nature of CLL, options for treatment, and access to CLL specialists. It is not only CLL that medical providers refer to as the good kind of cancer. Other cancers such as bladder and thyroid have also been labeled “good cancers” by medical providers; participants found this phrasing minimizing or comforting at turn.^34,35

The theme of long-term planning challenges is transferable to other people with chronic illnesses and indeterminable prognoses. Individuals living with metastatic breast cancer, long-term effects of COVID-19, and other chronic illnesses have all acknowledged the peculiar struggle to conceptualize their health status and plan ahead when their prognosis is vague.^36-39 Participants diagnosed at earlier ages and developmental stages described the challenges of ensuring their spouses and children would feel supported no matter what occurred. Participants approaching retirement described the realization that they would need to continue working to maintain adequate health insurance benefits. Both of these issues were compounded by the fact that it was unknown how long they might live with CLL. These complex considerations can be explained by LCT, which states that individuals’ age and developmental stage must be considered when analyzing key life events.¹⁷ Similarly, participants’ descriptions of making decisions about treatment and switching to CLL specialists (sometimes to the participant-perceived chagrin of their general oncologists) highlight the concept of agency in both LCT and in personal health literacy.

While being White is a risk factor for developing CLL, people of color may also be diagnosed with CLL. Black Americans tend to die earlier of CLL than White patients. Their perspectives are not represented in this study.

Limitations

Most participants reported learning about this study from CLL online support groups, websites, and informational listservs. As a result, self-selection bias may be present: people who had already sought support (emotional or informational) participated in this study that analyzed the experiences of people with CLL. Therefore, people with CLL who might have experienced less support outside of their family and friends are not represented in this study.

A second limitation is the absence of racial diversity among participants. All participants in this study identified as White. While being White is a risk factor for developing CLL,⁴⁰ people of color may also be diagnosed with CLL. Black Americans tend to die earlier of CLL than White patients.⁴¹ Their perspectives are not represented in this study. Findings on racially homogenous samples cannot be automatically generalized to the population without some caveat.⁴²

Conclusion

This phenomenological study is the first to explore how people experience and make meaning out of their CLL diagnoses. Future research should consider the perspectives of Black, indigenous, and people of color with CLL, as well as family members of people with CLL, to determine how to support diverse family systems during someone’s CLL diagnosis, period of watch and wait, and possible treatment. Participants’ frustration being told they have the good kind of cancer—and subsequently feeling that their concerns are minimized—must be shared with healthcare providers. In addition, oncology offices should be assessed for organizational health literacy to ensure that CLL patients are fully informed about their diagnosis, prognosis, and treatment options. Participants diagnosed at earlier ages and developmental stages expressed concern for their families. Those approaching retirement age while in active treatment questioned whether they could afford to retire, thereby foregoing employer-sponsored health insurance. Health providers should be made aware of these groups’ concerns and help connect patients to mental health and financial specialists. The findings of this study may inform medical teams and mental health specialists working with individuals with CLL and their families.

Author Disclosures

The authors have no conflicts of interest to disclose.

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