1. Introduction

Immune checkpoint inhibitors (ICIs) have introduced a revolutionary approach to cancer treatment and have led to successful outcomes in the treatment of many types of cancer in recent years. ICIs work by enhancing the immune system’s ability to respond more effectively to cancer cells, creating a new treatment strategy aimed at preventing cancer progression. This treatment method, particularly by targeting the checkpoints that prevent the immune system from recognizing and destroying cancer cells, improves the quality of life for cancer patients and enhances treatment outcomes. ICIs are generally better tolerated than chemotherapy, cause less systemic toxicity, and allow shorter or less frequent treatment regimens in some patients. These factors improve patients’ quality of life, both in terms of reduced physical side effects and a more psychosocially sustainable treatment process [1, 2]. The clinical successes of ICIs are increasingly solidifying their role in cancer therapy and securing approval for use in many cancer types [3–5].

The use of ICIs in cancer treatment provides significant clinical benefits, but it is also associated with some side effects. While these drugs enable the immune system to respond more aggressively to cancer cells, they can sometimes lead to excessive immune responses that may damage normal tissues. This can result in immune-mediated inflammatory side effects. Common side effects include skin rashes, fatigue, diarrhea, elevated liver enzymes, and organ toxicities caused by the immune system targeting healthy organs. A classification-based meta-analysis of immune-related adverse events (irAEs) according to organ systems has identified a range of effects: dermatological reactions such as pruritus, rash, maculopapular eruptions, vitiligo, and dermatitis; endocrine disorders including hypo/hyperthyroidism, hypophysitis, thyroiditis, and adrenal insufficiency; gastrointestinal issues such as colitis, diarrhea, pancreatitis, and elevated liver enzymes (AST and ALT) or bilirubin; respiratory complications including pneumonitis, pulmonary infiltrates, and interstitial lung disease; and renal events such as increased creatinine levels, nephritis, and renal failure. In patients receiving PD-1 pathway inhibitors, the pooled incidence of irAEs of any grade was approximately 26.8% (95% CI: 21.73–32.61; I² = 92.8), while the incidence of high-grade events was around 6.1% (95% CI: 4.85–7.64; I² = 52.0) [6]. Although rare, these drugs can trigger autoimmune diseases or worsen pre-existing autoimmune conditions. Side effects should be monitored throughout the treatment period, and adjustments to the treatment should be made as necessary. However, the side effects of ICIs can generally be managed by pausing treatment or with appropriate immunosuppressive therapies [7, 8].

While quantitative studies have provided valuable data on the clinical outcomes and adverse event profiles of immunotherapy, they often do not capture the lived experiences and subjective perceptions of patients undergoing such treatments. This qualitative study aims to address this gap by exploring the experiences of cancer patients receiving immunotherapy. Through in-depth exploration of patients’ perspectives, this approach allows for a richer understanding of how individuals make sense of their treatment, cope with side effects, and integrate immunotherapy into their daily lives. Gaining such insights is critical for informing patient-centered care strategies and improving the overall quality of the treatment experience. A review of the literature reveals that qualitative studies on the experiences of patients during the immunotherapy process are quite limited. This gap could pose a serious problem, particularly in situations where patients experiencing immune-related side effects may be unaware that they should seek oncology care rather than acute medical assistance or emergency services. Therefore, more comprehensive research and planning are needed to provide patient-centered, high-quality, safe, and effective care during and after cancer immunotherapy treatment. These gaps constitute a barrier to the effective management of treatment processes. For this reason, this qualitative study aims to explore the experiences of cancer patients receiving immunotherapy.

2. Materials and Methods

3. Results

Between June 2024 and January 2025, 28 eligible patients were identified, and 12 patients consented to participate. 16 patients declined participation, citing a lack of time or unwillingness to be interviewed. In total, interviews were conducted with 12 individuals. The patients were asked the questions listed in Table 1.

The average age of the patients was 58.33 ± 16.19 years, and the average duration since diagnosis was 2.17 ± 1.34 years. When examining the gender distribution of the patients, it was found that 41.7% were female (n = 5) and 58.3% were male (n = 7). Regarding the marital status, 58.3% were married (n = 7), and 41.7% were single (n = 5). When looking at the education level, 33.3% were literate (n = 4), 33.3% were elementary school graduates (n = 4), 25.0% were high school graduates (n = 3), and 8.3% had a university degree or higher (n = 1). The majority of participants, 58.4%, were retired (n = 7). In terms of income, 66.7% of patients had a middle-income level (n = 8), and 50.0% had quit smoking (n = 6). Regarding alcohol consumption, 58.3% of the patients were found to consume alcohol. In terms of tumor types, 58.3% of participants had lung cancer (n = 7), 8.3% had breast cancer (n = 1), 16.7% had prostate cancer (n = 2), and 16.7% had ovarian cancer (n = 2). When evaluating the disease stages, 58.3% were in stage III (n = 7), and 41.7% were in stage IV (n = 5). Regarding the use of ICIs, 58.3% were using Nivolumab (n = 7), 8.3% were using Ipilimumab (n = 1), and 33.3% were using Atezolizumab (n = 4) (Table 2).

4. Discussion

This study explores the experiences of cancer patients undergoing ICI treatment. The research identified five main themes. These themes include patients’ anxiety and uncertainty about the disease process, their need for information, feelings of trust, expectations for the future and hope, economic problems, and financial burdens, as well as gaps in knowledge regarding treatment-related toxic effects. The findings help health professionals gain a deeper understanding of cancer patients’ experiences during the ICI treatment process.

Patients have emphasized the emotional challenges they face after being diagnosed with cancer and the uncertainties of the treatment process. Lack of information about the severity of the disease and treatment options has caused anxiety and concern. A cancer diagnosis is often a traumatic experience for patients. During this process, while patients worry about the seriousness of their illness, the uncertainties of the treatment process also increase their levels of anxiety. For example, Zhang and Zhang note that the uncertainties cancer patients face during treatment negatively affect their emotional state and reduce their motivation toward the treatment [9]. Hou et al. conducted a qualitative study in which they reported that lung cancer patients receiving immunotherapy experienced a lack of information and expressed concerns related to uncertainty [10]. Patients experience an increased sense of uncertainty about the future when they lack sufficient information about treatment options, which raises their levels of anxiety. The lack of information about treatment options creates anxiety and concern. For example, patients who do not have enough information about immunotherapy face uncertainty about how the treatment process will proceed and its potential side effects [11–13]. Fukuoka and colleagues highlight that the uncertainties patients encounter during the treatment process increase their anxiety levels and make it more difficult for them to adhere to the treatment [14]. Additionally, the complexity of the immunotherapy process can negatively affect patients’ decision-making processes regarding their treatment [15].

The findings suggest that patients often base their knowledge of ICI treatments on fragmented and sometimes overly optimistic interpretations. The results suggest that patients often develop optimistic expectations based on fragmented sources of information, such as clinician communication, online materials, and anecdotal experiences. This information is obtained through a variety of channels, including clinician communication, online resources, and other patients’ experiences. This process shapes not only expectations of treatment efficacy but also perceptions of prognosis, leading to a high level of hope that often does not fully align with clinical reality. Similarly, another study by Boulanger et al. reported that uncertainty about prognosis often coexists with strong optimism, leading to increased disappointment in the subgroup with progression or toxicity [16].

When we asked in the consultation schedule if there were any other topics regarding immunotherapy that we would like to learn about, patients responded as follows: “How will I feel during treatment? How much will side effects affect my daily life?” “Will this treatment really work for me? How will I know if it is working?” “How long will the treatment last? When will I start seeing results?” Patients expressed a strong need for practical and personalized information, particularly around the physical and emotional experiences of treatment. These findings underline the importance of patient-centered communication in oncology care. Tailoring information to address these specific concerns could improve patient understanding, reduce anxiety, and support shared decision-making. Emotional support and information are crucial for helping patients overcome the emotional challenges they face. Nurses and healthcare professionals providing clear and understandable information about the treatment process can help reduce patients’ anxiety levels. O’Malley and colleagues demonstrate that increasing patients’ access to information during the treatment process improves their emotional state and enhances their adherence to treatment [17]. Additionally, support groups and psychological counseling services can help patients cope with emotional challenges [18].

The study found that patients expressed a lack of information, particularly regarding the treatment process, side effects, and concerns about the future. Similarly, a study conducted by Nicolas-Joseph et al. revealed that there are insufficient public, reliable sources to help patients obtain information about the side effects of ICI treatment [19]. In a study conducted by Hou et al., it was reported that patients with advanced-stage lung cancer have a lack of information regarding ICI toxicities [10]. Similarly, another study found that patients with advanced-stage melanoma were unable to obtain specific information about ICIs, such as potential toxicities or possible success rates [20]. In our study, patients generally reported feeling hopeful about ICI treatment and approaching it with optimism. Similarly, participants in Shuk et al.’s study were mostly cautiously optimistic; they hoped for positive outcomes but were also aware that the treatment could fail [21]. These findings suggest that healthcare professionals should inform patients about their treatment processes and potential side effects and correctly manage patients’ expectations regarding the effectiveness of the treatment.

In the study, patients reported feeling guilty both for being a financial burden on their families and for being unable to support them. Immunotherapies are among the most expensive cancer treatments. Immunotherapy is typically a longer-term and more frequently administered treatment (infusions every 2-3 weeks, up to 2 years). Patients cannot have definitive information about how long their response to treatment will last, and they worry about whether the treatment will need to be repeated or whether the disease will progress, and this uncertainty can persist for a long time. Immunotherapy is a relatively new treatment option, associated with high-cost medications and limited survival data. This situation suggests that the burden of uncertainty and cost may be more pronounced for patients receiving immunotherapy compared to those undergoing chemotherapy. Various studies have also highlighted that all patients are exposed to the high costs of immunotherapy and experience financial stress [10, 22]. These findings indicate that while immunotherapy represents a significant advancement in cancer treatment, it can also lead to financial strain on patients and additional burdens during the treatment process. Increasing access to treatment and alleviating the financial burden are crucial to ensuring that this treatment method is accessible to a broader population.

5. Conclusion

This study offers significant insights into the challenges and experiences of cancer patients receiving ICI treatments. The findings reveal key themes such as heightened anxiety, uncertainty regarding the disease and treatment outcomes, a strong need for reliable information, trust in healthcare providers, and the emotional impact of financial burdens associated with the treatment. These challenges, including anxiety and uncertainty, are particularly exacerbated by the prolonged treatment process, insufficient information on potential side effects, and financial difficulties.

The results emphasize the critical need for healthcare professionals to provide comprehensive, clear, and personalized information throughout the treatment journey. It is essential that providers not only address patients’ expectations concerning treatment efficacy but also manage the emotional and psychological aspects of their experience, ensuring that patients are well-prepared to navigate the uncertainties of immunotherapy. In light of these findings, future educational initiatives should focus on developing tailored programs that enhance communication between patients and healthcare providers. Such programs should equip patients with a thorough understanding of the treatment process, potential risks, and the expected outcomes, while also addressing their psychological and financial concerns. By improving these interactions, healthcare providers can help alleviate anxiety, foster trust, and ultimately contribute to more informed decision-making, thereby improving the overall patient experience and quality of care in immunotherapy settings.

Conflicts of Interest

The authors declare no conflicts of interest.

Author Contributions

Conceptualization: Dilek Yildirim and Ferda Akyuz Özdemir; methodology: Dilek Yildirim and Ferda Akyuz Özdemir; formal analysis: Dilek Yildirim and Ferda Akyuz Özdemir; resources: Dilek Yildirim and Ferda Akyuz Özdemir; data curation: Dilek Yildirim and Ferda Akyuz Özdemir; writing – original draft: Dilek Yildirim and Ferda Akyuz Özdemir; writing – review and editing: Dilek Yildirim and Ferda Akyuz Özdemir.

All authors reviewed the manuscript. All authors have contributed significantly, and all authors are in agreement with the content of the manuscript. The authors take full responsibility for the content of the article. The authors have contributed to, seen, and approved the final manuscript.

Funding

No financial assistance was received for this research.