How will I live this life that I’m trying to save? Being a female breast cancer survivor in Nigeria

ABSTRACT

Objectives

Nigeria is experiencing an increasing rate of new cancer cases while marred by a weak health system. As cancer prevalence increases in Nigeria, especially among women, it is crucial to understand the experiences of female cancer survivors, given that their quality of life may be influenced by perceptions of cancer and what it means to be a cancer survivor.

Design

This study employed a qualitative descriptive method. Semi-structured interviews were conducted with a purposive sample of 30 female breast cancer survivors in Abuja, Nigeria.

Results

The three major themes were views about being a cancer survivor, cancer can be stigmatizing, and life after cancer diagnosis and therapy.

Conclusion

We argue that cancer-related identity and cancer-related stigma are key factors with help-seeking and quality-of-life implications. Tailored interventions such as cancer health education and social support for cancer survivors may help reduce the burden of cancer in Nigeria.

KEYWORDS:

• Identity and cancer
• cancer in sub-Saharan Africa
• cancer-related stigma
• women’s health
• chronic diseases
• cancer health behavior

Introduction

According to International Agency for Research on Cancer (IARC), cancer is one of the leading causes of morbidity and mortality globally, accounting for about 10 million deaths in 2020, with female breast cancer surpassing lung cancer for the first time as the most diagnosed type of cancer (IARC 2020). Nigeria had an estimated 124,815 new cancer cases and 78,899 deaths due to cancer in 2020—with breast, cervical, and prostate cancers being the major contributors (Global Cancer Observatory 2021). It has been predicted that low and middle-income countries (LMICs) marred by poor health systems, like Nigeria, will have the relative increase in cancer incidence by 2040 (IARC 2020), thus, placing additional strain on a struggling health system with attendant poorer public health outcomes (Aruah 2019; Fapohunda et al. 2020; Okpani and Abimbola 2015). As cancer prevalence increases in Nigeria, there is a need to understand the experiences of cancer survivors, given that perception of cancer may be grounded in everyday beliefs (Kleinman 1978; Kleinman and Good 1985), and in some cases, attitudes about cancer can be stigmatizing (Knapp, Marziliano, and Moyer 2014; Mutebi and Edge 2014; Shiri et al. 2020) with quality-of-life implications.

Theoretical framework: cancer survivor as an empowering identity in Nigeria

A cancer diagnosis used to be synonymous with a death sentence (Shiri et al. 2020; Zebrack 2000), but research shows that survival rates, especially in high-income countries, have steadily increased. Countries like USA and Germany showed 5 years and 10 years of post-cancer diagnosis survival rates at approximately 60% and 40%, respectively (Thong et al. 2018). This is not the case in Nigeria where the mortality incidence rate ratio is 51% (FMoH 2022). This mortality rate has been attributed to factors such as late presentation, poor treatment access, and high level of poverty (Nwozichi et al. 2021; Ogunkorode et al. 2017). Nevertheless, this trend is slowly changing with earlier presentations and improved prognoses (Mutebi and Edge 2014; Olasehinde et al. 2021; Olayide et al. 2023) Cancer is joining the ranks of chronic diseases that people live with, and more people are projected to live with cancer in the coming years due to a combination of an increasingly aging population, increased risk of cancer incidence, and improvements in cancer prognosis (Deimling, Bowman, and Wagner 2007; Thong et al. 2018), thus, the quality of cancer survivorship and the concept of cancer identity becomes pertinent in a country like Nigeria.

As interest in cancer survivorship in low and middle-income countries grows, the consensus appears to be a shift from the traditional ‘victim’ or ‘patient’ identity to the more empowering ‘survivor’ identity (Cheung and Delfabbro 2016; Thong et al. 2018). According to the American College of Surgeons, a cancer survivor is an individual that has survived 5 years or more since their initial diagnosis with cancer (Mutebi and Edge 2014). However, some posit that a person becomes a survivor upon being diagnosed with cancer when they have to rethink their life and make certain adjustments (Cheung and Delfabbro 2016; Deimling, Bowman, and Wagner 2007; Zebrack 2000).

Further, studies show that the label of cancer survivor is not merely an identity earned by cancer diagnosis or completing a cancer treatment regimen, but one chosen over time after due consideration (Cheung and Delfabbro 2016). Such consideration and probable identification with the survivor identity is usually based on the individual’s unique illness experiences and on drawing social comparisons (Wanzer, Simon, and Cliff 2022). For instance, people in long-term remission who would ordinarily be classified as ‘survivors’ but are still dealing with the physical or emotional consequences of cancer, especially fear of recurrence, may identify themselves as ‘patients’ (Park, Zlateva, and Blank 2009; Thong et al. 2018). Generally, the survivor identity is the most popular identity adopted, and studies show that it is associated with better health outcomes (Deimling, Bowman, and Wagner 2007; Park, Zlateva, and Blank 2009; Twombly 2004).

Self-identifying as a survivor, then, can be a means of exhibiting agency in an otherwise ‘paternalistic, highly complex system of health care [where] patients become those who are marginalized’ (O'Hair et al. 2003, 197). To be sure, survivorship has also been used within the title of the National Coalition for Cancer Survivorship to promote a sense of empowerment (Park, Zlateva, and Blank 2009). Calling oneself a survivor may be one of the only spaces for exerting a sense of control or agency one has especially for patients ‘who desire choice but find such efforts blocked based on powerful, socially constructed forces’ (O'Hair et al. 2003, 198). While ‘survivor’ is widely used by cancer patients themselves, it is worth noting that there are still some who remain reluctant to identify as one for various reasons (Deimling, Bowman, and Wagner 2007; Mayer, Nasso, and Earp 2017), giving more meaning to those who do. Whichever label is ultimately adopted, it holds true that cancer patients strive to make sense of events in ways that reflect their values and goals for the future (Fryer 1986, 12). How a person diagnosed with cancer chooses to identify is an indication of having a voice (or active role) in the process (Geist and Gates 1996). This voice then, can be theorized as an empowerment tool reflecting a cancer survivor’s desire to exert agency (O'Hair et al. 2003, 197). This theoretical framework will be used to explain key findings in the study.

Cancer and quality of life

Cancer survivors often face various challenges arising from cancer itself or its treatment. This includes physical effects like organ damage, osteoporosis, diabetes, and obesity (Zebrack and Zeltzer 2003), and psychological effects such as depression (Adejoh, Esan, and Adejayan 2018), anxiety and low self-esteem (Adejoh, Esan, and Adejayan 2018; Knapp, Marziliano, and Moyer 2014). All these can affect the quality of life of cancer survivors.

Cancer survivors in low and middle-income countries (LMICs) contend with the constraints of low access to care (Esiaka et al. 2023) and poverty (Mutebi and Edge 2014). In Nigeria, cancer survivorship is affected by stigma, financial burden, limited access to health care services and treatment options, and availability of psychosocial support (Esiaka et al. 2023). Some middle-income households are in fact pushed into poverty by the catastrophic health expenditure associated with cancer treatment (Ogunkorode et al. 2017). Female cancer survivors in Nigeria depend on their partners/husbands for support, and due to fear of abandonment, some hide their diagnosis from their husbands, thereby worsening support inaccessibility (Nwozichi et al. 2021). Another study found that following primary treatment of breast cancer, the rate of divorce/separation among that population leaped to 38.3% as against the national average of 2.6% (Mutebi and Edge 2014) – resulting in emotional and social trauma which may affect cancer survivors’ overall quality of life.

For some survivors in LMICs, their quality of life was affected more by the cancer treatment, like chemotherapy whose effects some consider to be worse than the illness itself or mastectomy which is usually met with resistance (Ogunkorode et al. 2017). These treatments are associated with important physical, social, and psycho-emotional sequelae which influence survivors’ quality of life (Adejoh, Esan, and Adejayan 2018; Kisook and Yoon 2021). For example, there is an associated risk of loss of identity for those that underwent mastectomy because breasts are a significant component of women’s self-image as well as a symbol of femininity and sexuality (Adejoh, Esan, and Adejayan 2018).

Cancer-related stigma

Disease-related stigma is a set of negative attitudes, beliefs, thoughts, and behaviors toward someone with a chronic disease or obvious physical disability, and research shows that cancer is one of the stigmatized diseases in many societies (Knapp, Marziliano, and Moyer 2014; Mutebi and Edge 2014; Shiri et al. 2020). Certain cancers are more stigmatized than others depending on the cause, treatment, and outcome (Else-Quest and Jackson 2014). For instance, it has been reported that there is a higher likelihood of stigma and victim-blaming associated with lung cancer due to its link with lifestyle behaviors such as smoking (Knapp, Marziliano, and Moyer 2014). Similarly, colorectal and cervical cancer survivors report stigmatization due to the perception that colorectal and cervical cancers are caused by unsafe sexual practices (Knapp, Marziliano, and Moyer 2014).

In recent times, the stigmatization associated with cancer has taken an unusual dimension, whereby it is no longer the diagnosis of cancer but rather its potential to threaten the survivor’s identity that leads to stigma (Adejoh, Esan, and Adejayan 2018; Knapp, Marziliano, and Moyer 2014; Nwozichi et al. 2021). Where cancer survivors once faced blatant discrimination, it has become less socially acceptable to do so with more subtle responses like avoidance, isolation, and barriers to treatment being adopted (Knapp, Marziliano, and Moyer 2014). Research also shows that cancer visibility or treatment outcomes such as alopecia, weight loss, and mastectomy are important predictors of stigmatization (Knapp, Marziliano, and Moyer 2014; Nwozichi et al. 2021).

In addition to the lack of support it breeds, stigma could lead to feelings of guilt, shame, and self-blame, which have been linked to poor mental health outcomes among cancer survivors (Else-Quest and Jackson 2014). Furthermore, studies conducted in Africa found that stigma could act as a barrier to treatment, such that stigma resulted in failure to attend the few existing National screening programs and treatment facilities (Mutebi and Edge 2014). Failure to attend screening programs and treatment facilities led to delays in seeking care (Ogunkorode et al. 2021; Shiri et al. 2020) and the advanced stage of the illness at present, thus, increasing the risk of shorter survival time.

Life after cancer

While some cancer survivors reported a more positive outlook on life following cancer diagnosis and subsequent treatment, others reported significant cancer-related stressors persisting throughout survivorship (Firkins et al. 2020). These include but are not limited to lingering physical effects and fear of recurrence, employability (Knapp, Marziliano, and Moyer 2014), survivor guilt and emotional reorientation, and financial issues following the expensive treatment regiments (Esiaka et al. 2023; Ogunkorode et al. 2017).

As Nigeria, like other LMICs, struggle with providing a basic treatment regimen for cancer, the needs of survivors’ post-treatment can often be ignored or at best unrecognized as they are considered ‘cured’. The common albeit incorrect assumption that a survivor is ‘cured’, leads to perceptions of ‘end of cancer’ and ‘back to normal’, thus, these survivors are expected to return to their pre-cancer self (Knapp, Marziliano, and Moyer 2014). This notion can start right from the medical providers (Knapp, Marziliano, and Moyer 2014) and trickle down to society as a previous study reported that cancer survivors often get more social support when sick but notice a decline in support afterward (Miller and Caughlin 2013). The lack of support and resultant isolation experienced by cancer survivors could lead to depression, anxiety, loneliness, and posttraumatic stress disorder, and predispose them to risky behaviors (Firkins et al. 2020; Kisook and Yoon 2021), and poor health seeking behavior (Nwakasi et al. 2023). Thus, complicating their post-treatment interactions with others, and casting them into the role of a healthy individual. Further, the assumption of the role of a healthy individual may lead to poor adjustment and discourage survivors from seeking necessary social or medical support (Knapp, Marziliano, and Moyer 2014; Miller and Caughlin 2013) – negating the fact that cancer is not an event with a defined endpoint but a lasting condition (Zebrack 2000).

The impact of cancer on survivors extends to their workplaces and businesses – threatening their means of livelihood. On the one hand, there is evidence of blatant discrimination against cancer survivors upon return to the workplace and despite recent laws prohibiting such discrimination (Knapp, Marziliano, and Moyer 2014). On the other hand, cancer survivors struggle with issues related to functional ability. A study conducted in Nigeria among breast cancer survivors found that none of the women who were working prior to their diagnosis were currently able to attend to their job, either because of cancer symptoms or treatment side-effects (Adejoh, Esan, and Adejayan 2018). Considering the snowballing rates of cancer diagnoses in Nigeria and given the several described factors that can influence cancer survivorship experience, it is crucial to learn more about Nigerian cancer survivors’ perceptions about themselves in relation to their diagnosis, attitudes about cancer and therapy and views about life beyond a cancer diagnosis. Therefore, the purpose of this study is to deepen our understanding of cancer survivorship experiences in Nigeria, through in-depth interviews with women who identified as cancer survivors. Such findings can help inform tailored, effective interventions to improve the quality of life of the often-ignored cancer survivors in Nigeria.

Methods

This study used a qualitative descriptive research method to explore the experiences of Nigerian women who identified as breast cancer survivors. Qualitative descriptive approach uses straightforward descriptions to gain insights into poorly understood healthcare-related phenomena (Lambert and Lambert 2012; Kim, Sefcik, and Bradway 2017), for example, cancer survivorship experiences in Nigeria. Further, the method can be effectively used to explore the experiences of participants relating to a particular health issue or intervention, and most times does not require a theoretical framework to guide the study (Hyejin, Sefcik, and Bradway 2017; Sandelowski 2010). The findings were developed from a thematic analysis of data collected through semi-structured interviews, and actions were taken to ensure the trustworthiness of the findings. Details of the research steps are provided below.

Research setting and participant recruitment

The study setting was Abuja, Nigeria, and we recruited 30 participants using a purposive sampling approach. At the time of data collection, three participants were residing in other locations in Northern Nigeria. The study was approved by the institutional review board of the lead researcher. Consent forms were explained and shared with all the participants, and they gave verbal consent to participate in the study. Verbal consents are common in Nigeria research settings. To be eligible for the study, participants must have a history of cancer diagnosis, have commenced, or completed cancer treatment, be 18 years or older, resides in Nigeria, especially Abuja, and can complete a telephone interview in English.

All participants were recruited with the help of two women leaders in a community of cancer survivors. The two women, also referred to as gateway consultants, contacted potential participants about the study and asked for their approval to share their contact information with the lead researchers. WhatsApp messaging application was used to communicate with all potential participants. The successfully recruited participants were all women, between 29 to 55 years, 29 with breast cancer diagnosis and one skin cancer (with history of breast cancer), 28 Christians and two Muslims, and 28 with post-high school education. Table 1 shows participants’ demographic information.

Table 1. Demographic characteristics of participants who identified as cancer survivors.

Participants	Age	Marital Status	Education	Therapy Status	Has child(ren)
30 Women	29–55	16 Married	29 Tertiary	18 completed	19 No
		9 Single	1 High	12 not	11 Yes
		4	School	Completed
		Separated/Divorced	1 Elementary
		1 widow

Data collection

Two researchers conducted semi-structured interviews in English via telephone. The peak of the COVID-19 pandemic hampered in-person interviews due to restricted travel, and the researchers resided in the US. All participants verbally gave informed consent to participate in the audio-recorded interviews. The interviews ranged from 30 to 75 min, with an average duration of 46 min. Sample interview questions include: ‘do you see yourself as a cancer survivor;’ ‘would you tell me why you think/believe so;’ ‘tell me about your plans beyond cancer diagnosis.’ All interviews were transcribed verbatim, and pseudonyms were assigned to participants.

In addition to the interviews, the researchers used written memos to remain connected with the study objectives. Usually, when necessary, the researchers probed participants’ responses for further explanation, and the memo helped identify important concepts in the raw data and areas that required further exploration during data collection. Additionally, memos were useful in making meaningful interpretations of participants’ descriptions of their experiences as the researchers took note of some non-verbal expressions (e.g. anger, worry). The two lead researchers agreed to discontinue data collection after achieving data saturation, a point when no new information or relevant insight was gained with more data collection.

Data analysis

We used Dedoose (version 9.0.46) for data management and Braun and Clarke’s reflexive thematic analysis approach for data analysis (Braun and Clarke 2019; 2021). This inductive analytical approach allows flexibility in identifying patterns within the data and acknowledges the role of the researcher in the interpretation of patterns. Transcripts and written memos were thoroughly read multiple times by CN and DE while developing the codebook. Then, they developed initial codes which represented parts of the data believed to express relevant ideas based on the research question. Afterward, they reviewed the initial codes, including those with high usage, to identify emergent patterns. These codes were grouped to form themes. What followed was the definition of these relevant themes, noting supporting and conflicting quotes, and revising the themes if necessary.

Additionally, we took steps to ensure the trustworthiness of the findings. First, CN and DE, both skilled qualitative researchers, met regularly to discuss the research techniques employed and aspects of the data collection and analysis. They also discussed emerging findings to ensure they were appropriate before moving forward. This process is called peer-debriefing. Second, they conducted member checking, which involved sharing the findings from the data analysis with the participants. One of the lead researchers (CN) traveled to Abuja, Nigeria, where he met with 19 of the 30 participants to review key findings. Four group discussions, each lasting about an hour, were held to discuss emergent themes – the participants were encouraged to provide feedback on whether the interpretations presented resonated with the experiences they described. The researcher found the meetings were useful, and the notes taken during these meetings also helped the researchers make better sense of the data.

Findings

Below, we report three themes relating to the experiences of cancer survivors in the study. They include being a cancer survivor, cancer can be stigmatizing, and perceived future after diagnosis. Table 2 shows these themes and some corresponding illustrative quotes from the participants.

Table 2. Study findings showing themes and illustrative quotes from participants.

Themes	Illustrative Quotes
1. Views about being a cancer survivor (Explains diverse ways participants made sense of being a cancer survivor and identifying as one)	After treatment sometimes, when you have a little edge … . you start panicking, I hope it’s not cancer, I hope it’s not coming back, I pray it is not coming back. Yes, since when I joined [a psychosocial support group], I see myself as a cancer survivor. I’m going to make it [survive cancer] no matter what, I know that I’m going to make it
2. Cancer can be stigmatizing (About negative attitudes from people that points to the stigma of having a cancer diagnosis.)	It was not easy because I have been mocked, I have been laughed [at], I have been embarrassed [because of my diagnosis] I was saying then that if I should get such illness [cancer], it’s better I die than to come to TV and ask for help
3. Life after cancer diagnosis and therapy (Described thoughts about the future and trying to look beyond the cancer diagnosis)	…  I cried and I was just asking God even the doctors – how will I live this life that I’m trying to save? How do I live a life with one breast at this age? How?  … I look forward that one day, I will have my own foundation where I can really help people because I knew that during that treatment there are some people that gave up on life because there’s no money

Views about being a cancer survivor

This theme describes diverse ways participants made sense of being a cancer survivor and identifying as one. One of the questions relating to this theme was, ‘do you see yourself as a cancer survivor, and why,’ for those who said yes. Continuing the earlier conversation of self-identifying labels as a means of exhibiting agency, it is worth noting that all participants identified as cancer survivors, albeit for varied reasons. For some, being a cancer survivor means believing that there will not be cancer recurrence. Ayo, responding to a question about why she believed herself to be a survivor said: ‘After treatment sometimes, when you have a little edge … . you start panicking, I hope it’s not cancer, I hope it’s not coming back, I pray it is not coming back.’ Some participants described being a cancer survivor as believing that you can beat can even if it reoccurs. Didi mentioned: ‘I believe that I have survived cancer, even though the fear of recurrence comes to my mind, I believe that I will still beat it again.’

Another participant, Aisha, linked her views of being a cancer survivor with her faith. She said: ‘Yes [I believe I am a cancer survivor]. So long as God keep me, yes. And I know He will keep me much more.’ Cheta shared something similar. She said: ‘ … so it’s God and God grace and just the spirit of God that made me go through it [cancer treatment] actually, I’m a survivor.’ For other participants like Tina, identifying as a cancer survivor helped increase compliance with her cancer treatment. She said: ‘I say it to myself every day that [called her name], you will not die of cancer. That made me to take my treatment very serious, religiously.’

Accessing care and support may strengthen the identity of being a cancer survivor. Miriam explained: ‘Yes, since when I joined [a psychosocial support group], I see myself as a cancer survivor. I’m going to make it [survive cancer] no matter what, I know that I’m going to make it.’ Relating to care and support, Sandra added: ‘I see myself as a 100% cancer survivor, even from day one and I think what has actually prepared me for my present status. I was my working for a network of people living with HIV and AIDS in Nigeria.’

Additionally, for some participants, identifying as a cancer survivor was a way of self-encouragement. Fatima commented:

For me, I have been open about it [having cancer] and I told myself that I’m going to make a difference … that I’m a different kind of them [people with cancer]. So, I’m a survivor all the way. I’m a rugged survivor and that is what I will remember. I will live. Superwoman.

Fatima’s comment suggests that she sees herself differently from other people diagnosed with cancer who may be pessimistic about their chances of survival. She showed optimism. Further, other participants described how identifying as a cancer survivor can be self-encouraging. For example, Ese also added to this view. She described: ‘Yes, I see myself as a cancer survivor, and in fact, whenever I’m in a midst of people, and I want to introduce myself I tell them I’m a cancer survivor because I know I’m a survivor.’ Another example of hope that comes from identifying as a cancer survivor was described by Ola. She said: ‘I am a survivor, that word continues to ring in my head even when I’m very sick. I just remember I’m a veteran, so I ask myself, what am I worried about? Just keep going.’

Cancer can be stigmatizing

Participants highlighted some negative attitudes relating to the stigma people attached to them because of their cancer diagnosis. Due to the stigma and negative attitudes, participants resolved to hide their diagnosis from others. For example, Eka mentioned being sidelined from activities at her workplace due to her diagnosis. She said: ‘I don’t take part with the things they are doing. If they have good things, they will say you’re sick that you cannot take part, I said oga [boss] I’m not sick, they say, no, you’re sick.’ Eka’s comment suggests that she was prevented from partaking in activities she finds beneficial at work. Eka also added: ‘It was not easy because I have been mocked, I have been laughed [at], I have been embarrassed [because of my diagnosis].’ Further, Nkechi expressed her concern over how her diagnosis may have led to her unemployment. She described:

Then I was teaching in a private school … every day I will leave [for chemotherapy] … so my proprietor asked me to stop temporarily, but after treatment they never called me back. I was wondering if it’s because of the cancer I had, but they said no, that they don’t want to stress me anymore, that I’m not strong, I should go home and take care of myself. That was how they discharged [fired] me.

Cancer stigma was found to affect help seeking behavior among participants. Ola, described her fear of cancer stigma: ‘I was saying then that if I should get such illness [cancer], it’s better I die than to come to TV and ask for help.’ This comment indicates that fear of cancer-related stigma can be so severe that a survivor would rather not seek help, than risk exposure to the public. Another example was from Ese who explained how cancer-stigma can affect help seeking among survivors. She described:

I went there [hospital] and the lady was crying as if she was going to commit suicide; that she was diagnosed of having breast cancer, and she’s supposed to get married. Now, she was running away from the treatment because she felt the guy abandoned her [due to her diagnosis] and she doesn’t want to go through with the treatment.

Cancer treatment such as mastectomy, a surgical removal of a person’s breast may increase the risk of stigma, thus, explaining why some cancer survivors initially refused treatment. Kike stated: ‘When I heard they wanted to cut the [my] breast I ran away for two years.’ Nkechi also described a situation with a cancer survivor who was dying from cancer and still refused treatment, especially surgery. According to her: ‘ … she [the survivor] said if she goes to the hospital, they will cut her breast and she wouldn’t want to cut her breast, even though she is going to die, she wants to die complete.’ This comment suggests that the woman would rather die of cancer than live with the shame of having her breast cut off.

Some of the participants also mentioned that cancer-related stigma can come from family members. For Nkechi, her mastectomy made her a victim. She described how her husband treated her when they had spousal disagreements. According to Nkechi, he would retort that ‘he hasn’t finished seeing [acknowledging] people with two breasts and you with one breast are talking … So emotionally it breaks me down.’ Another participant, Kemi, also described how negative views about cancer can affect single women who hope to be married. She said: ‘ … imagine a young girl having one breast, would you [she] even get married? You know the fear of the unknown, but God has been with me.’ This shows that cancer-related stigma can affect having intimate relationships. Ayo’s comment also supported this view. She described:

Sometimes I’m scared that once you tell your partner that you’ve been through something like this [cancer diagnosis], he might just run away because I heard some stories of people who their husbands left them due to their cancer diagnosis.

Life after cancer diagnosis and therapy

While describing their experiences relating to cancer survivorship, most participants shared views of their thoughts concerning their future after cancer diagnosis. Some of the participants’ responses reflected hope for a future beyond cancer with their children. Kike mentioned: ‘After all these wahala [cancer health problems], I want to see my children graduate from medical school. [They are the reason] that I’ve suffered all these things for. I have to be positive.’ Eka prayed to live long to care for her young children. She said: ‘ … I keep on begging God to forgive me in any way I offended him, to forgive me, so to live and take care of my children.’ Bimbo also talked about her hopes for the future, specifically, about having a family. She commented:

I’m not yet married. I will find a husband; I will still live my life and bear children, and still live happily like other people that have not come across cancer. At least, there are other women that they removed their breast, they have one breast, but they are still living. They marry, they have children and are still living happily like normal human beings. I believe I will be one among them, I will live like them.

Bimbo’s comment suggests that she does not feel discouraged by being a cancer survivor, especially one with a mastectomy. She believes and hopes that she will get to live the life she has always wanted. Similarly, Chioma commented: ‘What I’m looking forward to is that whether cancer or not, I must surely have my children. Cancer will not stop me. And I have the hope that I will live long, I will not die young.’ These comments about marrying and having children may show signs of hopefulness among the study participants, but it is important to add that some of the participants struggled initially to think about their future in a positive light because of the impact of cancer, including a mastectomy. For example, Linda described:

Before I went through mastectomy, I really cried. If you see me then, two days to my surgery, I was looking terrible. I cried and I was just asking God even the doctors – how will I live this life that I’m trying to save? How do I live a life with one breast at this age? How?

Additionally, some participants discussed making plans beyond a cancer diagnosis to advance their education. For example, Kike said: ‘ … I finished the breast [surgery], I finished radio[therapy], I finished all those things in 2018, I was not happy with myself. I took a form and applied to go do my masters and I was just happy with myself.’ Another participant, Anu, also talked about education and her future. She said: ‘So, I see myself beyond [cancer therapy]. If given the opportunity, I can still further my education.’ Their comments suggests that positive emotions can be derived from taking actions towards improving oneself after cancer therapy.

For other participants, positive emotions come from helping and supporting others. For example, Funke stated that her plan for a life beyond cancer includes having the means to support those who were going through extreme hardship as cancer survivors. She explained: ‘ … I look forward that one day, I will have my own foundation where I can really help people because I knew that during that treatment there are some people that gave up on life because there’s no money.’

Discussion

This study explored breast cancer survivors’ experiences to deepen our understanding of cancer survivorship in Nigeria. Our findings on views about being a cancer survivor, stigma related to cancer, and perceived future after diagnosis help to provide insight into the effect of cancer in Nigeria. The theoretical framework of ‘cancer survivor’ as an empowerment identity in Nigeria is well suited for explaining the findings because it provides a unique understanding of the experiences and needs of cancer survivors and guides targeted effort towards addressing cancer disparities. Similar to findings in previous studies (Cheung and Delfabbro 2016; Thong et al. 2018), the women in the study identified as cancer survivors, and most described this identity as empowering.

A sense of identity can influence a person’s health outcomes (Haslam et al. 2009; Palmer-Wackerly et al. 2018). For the participants, identifying as cancer survivors gives them a positive outlook on their situation, helps them cope, and strengthens their belief that cancer will not recur after treatment. Our finding is like previous studies with reports that identifying as a cancer survivor may result in positive health behaviors and outcomes (Deimling, Bowman, and Wagner 2007; Park, Zlateva, and Blank 2009). Also, studies found that a negative identity associated with a disease may result in low interest in cancer treatments (Harwood and Sparks 2003; Palmer-Wackerly et al. 2018) and challenges with spirituality (Ai et al. 2010; Palmer-Wackerly et al. 2018). These studies support our findings where some women mentioned that identifying as a cancer survivor helped them adhere to their treatment and reinforced their spirituality.

In our study, we found potential benefits in participants identifying as cancer survivors. This supports Sulik’s (2011) findings that cancer survivor identity may result in increased courage, confidence, self-esteem, and ability to cope with cancer, resulting in a sense of control. This sense of control is particularly important in Nigeria where people diagnosed with cancer have a likelihood of seeing their diagnosis as a death sentence and shying away from chemotherapy and surgery (Esiaka et al. 2023; Nwakasi et al. 2023). Overall, the finding supports the theoretical framework of cancer survivor identity as an important empowerment means (Geist and Gates 1996; O'Hair et al. 2003) that helps to elevate the voices and agency of Nigerian women with cancer, who are persistently at risk of being marginalized and lacking cancer-relevant resources.

In line with previous studies (e.g. Adejoh, Esan, and Adejayan 2018; Knapp, Marziliano, and Moyer 2014; Mutebi and Edge 2014; Shiri et al. 2020), the study found that cancer survivors experienced cancer-related-stigma. Women in the study experienced social isolation because they were prevented from partaking in activities they enjoy or were mocked, and for some, cancer resulted in loss of employment. Also, stigma may affect help-seeking behavior in cancer survivors (Mutebi and Edge 2014; Nwakasi, de Medeiros, and Bosun-Arije 2021; Ogunkorode et al. 2021; Shiri et al. 2020). A participant in the current study mentioned that she would rather die than use the media (e.g. network TV stations) to seek financial support from the public for her therapy. Another participant abandoned her treatment because of cancer stigma and abandonment by her husband, who left her due to the shame associated with cancer. To further contextualize the extreme effect of stigma, cancer mortality in Nigeria is high (FMoH 2022; GCO 2021) and can be attributed to health system issues including lack of specialized cancer health care workforce, and health financing (Aruah 2019; Fapohunda et al. 2020; Okpani and Abimbola 2015). Thus, survivors already are at high risk of cancer death, and not adopting help-seeking, potentially life-saving behaviors due to cancer stigma will likely increase their risk of dying.

Further, previous studies established that cancer affects quality of life (Adejoh, Esan, and Adejayan 2018; Firkins et al. 2020; Han et al. 2021; Knapp, Marziliano, and Moyer 2014), and this was evident among the women in the current study. Our findings suggest that cancer-related stigma is more likely to worsen cancer survivor’s mental health and quality of life because stigma increases the risk of suicidal ideation, social isolation of survivors, and loss of means of livelihood. Thus, sociocultural influences such as stigma on cancer survivorship in Nigeria deserve further examination to better improve the quality life of cancer survivors.

The negative effects of cancer on the overall health and wellbeing of cancer survivors were also evident in their outlook on their future and life after cancer diagnosis. Our finding supports previous research that highlighted the detrimental impact of cancer on the wellbeing of survivors (e.g. Adejoh, Esan, and Adejayan 2018; Esiaka et al. 2022; Knapp, Marziliano, and Moyer 2014). This finding notwithstanding, we also found that although the women in the study acknowledged how extremely difficult their situations were, most hoped for a better future. Like reports from previous studies (Adejoh, Esan, and Adejayan 2018; Nwozichi et al. 2021; Ogunkorode et al. 2021; Valenti 2011), some of the participants’ hope was rooted in their faith in God. Another aspect of their hope was based on the perceived desire to have children or the responsibility of being a mother. Our findings are supported by studies on resilience and wellbeing (Kobasa 1979; Kobasa, Maddi, and Courington 1981; Valenti 2011), which found that commitment to values, goals, and capabilities, all of which may be related to the traditional importance of being a mother, is likely to increase resilience in cancer survivors. For other participants, having life goals such as plans to go back to school, start a non-profit organization, or volunteer to help others affected by cancer resulted in psychological resilience.

Limitations

While the current research provides valuable insights into the poorly understood experiences of Nigerian women who identify as cancer survivors, it is not without its limitations. Most participants were breast cancer survivors, and their experiences may differ from those of other cancer survivors. In addition, understanding the experiences of Nigerian women who are cancer survivors requires consideration of the cultural, societal, and healthcare system factors specific to Nigeria, which were not adequately addressed in the current study. The participants were educated women from urban areas in Nigeria. Therefore, the findings may not be generalizable to a larger population of Nigerian cancer survivors, especially those who are uneducated and living in rural areas.

Moreover, the experiences of Nigerian women who identify as cancer survivors may vary significantly based on individual, religious, and cultural differences, limiting the transferability of the findings beyond specific study participants. Phone interviews were conducted for data collection. While using phone interviews in research can be a convenient and cost-effective approach, phone interviews lack visual cues and limit non-verbal communication that can provide valuable contextual information. Non-verbal cues such as body language, facial expressions, and gestures can contribute to a deeper understanding of participants’ emotions, attitudes, and reactions. Despite these limitations, our study provides much-needed insights into the experience of cancer survivorship among Nigerian female cancer survivors.

Implications

This study illuminates the need for pathways to reducing cancer burden, including cancer survivorship challenges, in Nigeria. If countries like the US, despite their advanced health system, are faced with challenges in improving cancer survivorship, it can be argued that due to Nigeria’s weak health system, cancer survivorship needs in Nigeria are critical (Ogunkorode et al. 2017). Nigeria is a patriarchal society where women such as wives depend on their husbands for financial support, including access to medical care that requires out-of-pocket expenses. Thus, more cancer health education in Nigeria may help reduce cancer-related stigma that often led to the abandonment of cancer survivors by their husbands and families. Future studies may consider exploring resilience among cancer survivors in Nigeria to deepen our understanding of why some cancer survivors felt optimistic about their future even when faced with what seemed like insurmountable odds.

Conclusion

While Nigeria continues to contend with a weak health system including a shortage of cancer healthcare workers, it is important to stress the increasing number of cancer diagnoses in the country. This study on the experiences of cancer survivors in Nigeria is one of the few studies to offer more understanding of cancer survivorship in Nigeria. The study highlights what it means for women to identify as cancer survivors, the effect of stigma on the quality of life of cancer survivors, and the perception of their future beyond cancer diagnosis and treatment. Our findings indicate the need for cancer survivorship policies in Nigeria to address the challenges of cancer survivors and the urgent need for tailored cancer health interventions.

Ethical approval

Our study was approved by the Institutional Review Board of Providence College, Rhode Island. All participants provided verbal informed consent before enrollment in the study.

Acknowledgment

The authors wish to thank Providence College for the providing funding support for this study. We are also grateful for the research support from Dr. Chizobam Nweke, Department of Human Development and Family Sciences, University of Connecticut, and Project PINK BLUE – Health & Psychological Trust Centre, Abuja, Nigeria.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by Providence College.