Fear of cancer Recurrence Despite a good prognosis: A Qualitative study with Thyroid Cancer Patients

doi:10.21203/rs.3.rs-2595837/v1

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Fear of cancer Recurrence Despite a good prognosis: A Qualitative study with Thyroid Cancer Patients

https://doi.org/10.21203/rs.3.rs-2595837/v1

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Objective: Thyroid cancer’s emotional and mental toll is often beyond the disease’s duration. The fear of cancer recurrence (FCR) was prominent among cancer patients and survivors, but there are few studies on this population. This study aims to explore the experience of FCR and expand understanding of FCR in patients with thyroid cancer.

Methods: In this qualitative study, 18 patients with thyroid cancer were included via semi-structured interview. The average age of the respondents is 41-year-old, and the average time since diagnosis is 2 years.

Results: In the process of exploring the experience of FCR in thyroid cancer patients, the following three themes have emerged: First, "uncertainty of disease" refers to the uncertainty in face of cancer. Most of the participants are committed to trying to return to the state before diagnosis. The second is the "triggers for FCR", which involves internal and external factors. The third is the diversification of FCR management, which included fatalism and active response to seek help.

Conclusions: The fear of cancer recurrence in thyroid cancer patients needs further understanding. Medical staff can reduce or buffer FCR in thyroid cancer patients by treating triggers and strengthening positive changes.

thyroid cancer

fear of recurrence

qualitative

survivors

Chinese culture

Fear of cancer recurrence (FCR) has been defined as “fear, worry, or concern related to the possibility that cancer will come back or progress”, which is one of the prominent concerns of thyroid cancer survivors¹. Often overlooked by health care teams, FCR would lead to emotional distress, impaired psycho-social adjustment, and quality of life. Thyroid cancer is the most common endocrine tumor. The diagnosis of thyroid cancer, especially papillary thyroid cancer, is increasing rapidly worldwide (annual incidence, 586000 cases worldwide in 2020)². In China, the incidence of thyroid cancer continues to grow at a rate of 20% per year³. Although the prognosis is good, with a 20-year relative survival rate of up to 90%, fear of cancer recurrence plagues patients⁴.

Previous data on FCR in thyroid cancer are mainly based on quantitative studies, whereas the subjective experience of the disease has not been explored in depth. Rogers et al. reported that half of the patients experienced moderate fear⁵. The majority of quantitative studies have examined predictors or variables associated with FCR. Younger age, a shorter time since diagnosis, and comorbidity were associated to higher FCR⁶. Few clinical resources have been directed towards helping thyroid cancer patients overcome FCR. Many survivors report not receiving adequate support regarding FCR⁷. Furthermore, the majority of qualitative studies have focused primarily on patients reaction to diagnosis⁸, the treatment decisions between providers and patients⁹, the influence of emotions on treatment decisions^10–14, active surveillance for thyroid cancer¹⁵, over-diagnosis and screening for thyroid cancer¹⁶, the experience of re-operation for recurrence disease. Moreover, the existing qualitative studies regarding FCR were focused on breast cancer^17–18, colorectal cancer¹⁹, ovarian cancer²⁰, and cervical cancer ²¹. FCR has not been adequately examined in thyroid cancer survivors.

Despite a good prognosis for differentiated thyroid carcinoma, survivors frequently worry about the possibility that cancer may return or progress in the same place or another part of the body after surgery. It can trigger excessive physical check-ups. Screening for routine clinical follow-up consultations could alleviate their concern and improve health outcomes. While over-screening would lower quality of life and psychological well-being^22–23. Therefore, it is needed to understand the vulnerability of thyroid cancer survivors to FCR. It is a fertile area for further exploration to help with a smooth transition from a thyroid cancer patient to a survivor while providing support. This literature aimed to qualitatively explore the experience of recurrence fears among thyroid cancer survivors.

Study sample and setting

Purposive sampling was used to select participants from July 2022 to October 2022. The eligibility criteria were as follows: (1)postoperative thyroid cancer patients; (2)aged over 18 years; (3) read and speak Chinese fluently; (4) completed the surgery or radiation at least 3 months before study initiation. Patients who recurred cancer recurrence or followed with other types of cancer were excluded. A non-proportional quota sampling technique was applied to make participants roughly equal in population, such as age, income, and education. The sample size (n = 18) was determined based on theoretical saturation. In other words, the interviews ended when no more or new themes emerged in the process of data analysis. Categorical saturation was reached after 14 interviews, although four more interviews was conducted to ensure we have passed the point of saturation.

Data collection

A total of 18 patients participated in the study. Two patients refused to participate. All participants were recruited from their healthcare providers in a clinic of the thyroid department. Patients would be contacted by the first author via phone to confirm that they met the inclusion criteria. Once the criteria were informed, they would determine the appropriate time to interview via telephone. Verbal informed consent was obtained before the interviews.

Data collection consisted of one semi-structured interview with each participant, all of which were approximately 30 minutes in length. All interviews were conducted by the first author, a nurse who worked in thyroid department as well as had previous training in both clinical and qualitative interviewing. Consistent with qualitative methodology, data collection and analysis were conducted simultaneously thus allowing the opportunity to add questions to the interview guide as necessary based on themes that emerged during the interviews. Interviews began with the questions “ do you always think about the possibility of cancer recurrence? If so, what is the content of these thoughts? ”. The main questions include: “ under what circumstances will this fear be triggered? How do you manage the fear of cancer recurrence? ”.

Data analysis

All interviews were audio-taped and transcribed verbatim to ensure accuracy. Content analysis was applied ²⁴. Two researchers read the transcripts repeatedly, taking notes to categorize into themes. These notes were labeled with a code. Differences between codes were resolved through discussions until reaching a consensus. The final themes were determined that emerged from the data and places them into context, enabling analysis and integration of large amounts of data and the generations of abstractions and interpretations. To ensure the rigor of the qualitative study, a sample transcript was analyzed independently by two researchers.

Ethical considerations

All information about the participants was kept confidential by the first author, the other researchers only handled anonymized data.

Exploring the FCR among thyroid cancer survivors produced 3 themes that are illustrated as followed.

Theme 1: uncertainty in face of the illness.

The interviewees described that they were diagnosed with thyroid cancer during the physical examination and then went to the hospital for surgery. Some interviewees argued that although they understood that the probability of dying from their disease was low, the fear remained. FCR changed dynamically over time, especially after interviewees learned about knowledge of thyroid cancer and completed surgery. Some patients also expressed that they experienced serious FCR in the first two years.

I suffered from thyroid cancer. It was cancer and I was scared to death. I recovered quickly after the operation, just like normal people. I felt less scared than before because the doctor told me a lot about diseases. (Interviewee 4)

At that time, the left side of my thyroid had a problem. I still urged the doctor to remove the right side. Because cancer has the possibility of recurrence and metastasis. (Interviewee 7)

Some interviewees thought that anyone was invulnerable to recurrence. Although surgery has passed a long time ago, some patients considered mild symptoms as signs of recurrence and metastasis, which would cause panic. More patients said that they often went to the hospital for physical examination after diagnosis of cancer, emphasizing the uncertainty of health.

The last time I felt a little sick in my throat, I immediately went to the hospital and had a relapse. I am worried whether cancer transfer to my throat. (Interviewee 4)

I've lost my hair badly in recent years. I don't know if it is related to this disease. I consult with the dermatologist, and the doctor said there was nothing serious. I also have an appointment with a gynecologist to check the uterus because menstruation is a little disordered. (Interviewee 2)

The interviewees described the difficulties of medical examination, which may increase the possibility of recurrence. Some patients desired to be closely monitored and educated about disease information, to avoid recurring and reduce uncertainty.

Despite it has been one year since the operation, I still feel worried, especially since I'm going to work in another city, and I can't find my surgeon to continue my review. I get more anxious. (Interviewee 8)

We have a WeChat group of patients, where patients will share their experience in disease. However, it would be better if medical staff could carry out close supervision and regular disease education. (Interviewee 10)

The doctor himself cannot determine whether the patient will have recurrence or metastasis so that they transfer the fear of recurrence to the patient possibly. In addition, the respondents' anxiety about FCR is not limited to themselves, but also worried about their children.

Before the operation, I asked the doctor if the disease had nothing to do with me once I finished the operation. The doctor smiled awkwardly and said that I have to take medicine and check regularly. (Interviewee 8)

I stopped working and took care of my children after diagnosis. Sometimes when she has a fever, I will be very nervous and worry about whether I pass on the cancer gene to her. (Interviewee 8)

Theme 2: Triggers of FCR

It is divided into internal factors and external factors. External factor refers to hearing about the experience of cancer patients or seeing the words of cancer.

Since I was diagnosed with this disease, as soon as I hear that someone around me died of cancer, I will become very sensitive and nervous. (Interviewee 13)

I bought serious disease insurance. Every time I think of cancer, I am very afraid. After all, cancer will return and metastasize. (Interviewee 3)

The internal factors not only refer to the neck scar left by conventional surgery, but also include physical symptoms.

Now the most uncomfortable is the scar on my neck. Every time I look in the mirror, it seems to remind me that I have had this disease, which is cancer. (Interviewee 14)

After leaving the hospital, I started to eat Youjiale. I always feel very hot. The heat from my heart to my skin made me feel uncomfortable. I dare not stop taking medicine without permission. (Interviewee 12)

Theme 3: Coping strategies

Most of them have a fatalistic attitude toward cancer. They believed that death was doomed, and the only thing left to do is to let nature take its course.

Because I didn't take this disease seriously, there were no symptoms before and after the operation, and my life was normal as before. (Interviewee 7)

Life habits are the same as before. There is nothing to do and nothing worth doing. (Interviewee 3)

Some interviewers responded positively to FCR. Some patients adopt cognitive avoidance. Avoidance may be a kind of protection mechanism, so as not to overthink the impact caused by disease, and to weaken the impact of stress.

I learned that thyroid cancer is the lightest one among cancers, which is also a blessing in misfortune. If work pressure is too high and my body cannot bear it, I will consider quitting my job. (Interviewee 1)

Keep yourself busy and protect yourself from thinking too much about the disease. (Interviewee 10)

Some interviewees said that they gain much support and comfort from their families, and the optimistic resources within their families greatly reduced patients' fear of cancer recurrence.

Sometimes I am afraid of some symptoms. My daughter and my love care about me and worry about my bad mood. They always give me a lot of comforts. (Interviewee 14)

The current study showed that the experience of FCR among thyroid cancer survivors is dynamic. Survivors’ perceptions of their illness play a crucial role in the severity of FCR. According to the narratives of the interviewees, they were suffering. FCR silently dominated their lives. Three themes emerged from the experience of FCR: the uncertainty of cancer, the triggers of FCR, and various coping strategies.

The first theme is uncertainty in face of the illness. In accordance with Simard’s study, FCR is associated with distress²⁵. Although thyroid cancer is generally associated with a good prognosis, FCR is also prevalent in thyroid cancer patients²⁶. Hedman et al. investigated that about a quarter of thyroid cancer patients had a negative view of life and three fourth of them experienced FCR²⁷. In addition, according to the uncertainty in illness model, perception of uncertainty in illness occurs when the patient does not know how to solve unpredictable progression and prognosis of the disease, and lack of information related to disease²⁸. This is consistent with the results of qualitative study, fear and uncertainty have a relationship with a cancer diagnosis, feelings of the disease being dismissed, lacking information on treatment²⁹. However, uncertainty in illness leads to a series of negative emotions, including fear of cancer recurrence, which has been considered a significant variable affecting health-promotion behaviors^30–31. FCR as a negative view substantially affects the quality of life³², which should be given additional attention. Information about health threats is helpful to control fear so that health providers should provide enough information about thyroid cancer.

The second theme: triggers for FCR. This study found that hearing about the recurrence, metastasis, or death of other cancer patients may lead to distress and increase concerns by comparing their health with other cancer patients. In line with this notion, the social-cognitive theory argues that people, environment as well as behavior are mutually causal³³. In other words, the social environment can either enhance or inhibit the cognitive processing of the cancer experience. Similar results were conducted in a qualitative systematic review, which noted that the common triggers for FCR were hearing about others’ cancer experiences and physical symptoms³⁴. In our study, unrelated symptoms were regarded as signs of cancer progression or recurrence of cancer, such as a feeling of neck stretch after surgery and adverse reactions caused by taking sodium levothyroxine. The review also showed strong evidence for a relationship between physical symptoms and elevated FCR³⁵. Postoperative neck cosmesis is a major concern of patients undergoing thyroid surgery, from which negative impacts were underestimated by clinicians³⁶. Scars left by conventional open surgery often remind them of the identification of cancer patients, a disease which is hard to get rid of³⁷. Some patients benefit from improved information provision and management of expectations of endoscopic surgery ^38–39. Lee’s study indicated that the 5-year oncologic and surgical completeness of endoscopic surgery were comparable to those of open thyroidectomy in papillary thyroid cancer patients⁴⁰. Similar results were proved between robotic total thyroidectomy and conventional thyroidectomy⁴¹. A meta-analysis showed that endoscopic thyroidectomy were found to be an effective and safe choice for patients with cosmetic concerns⁴². In a word, medical staff are supposed to discover the triggers for FCR and take measures timely to reduce FCR.

The third theme: the patients in the present study made attempts to overcome FOR. The literature suggests that cancer survivors use many different coping strategies to manage FOR. In this study, elderly women adopted the fatalism method to avoid the fact of cancer by hiding their worries, and suppressing the will not to share with others. However, avoidance may inhibit cognitive processing and exacerbate emotional distress⁴³. According to terror management theory, when FCR was the highlight, people were more likely to balance cognitive process and live a healthier lifestyle. For example, patients conducted in this study are more likely to engage in busy work and positive life. A survey study showed that many patients report an unmet need for psychological help and practical tips about FCR⁴⁴. Cognitive behavioral therapy, acceptance and commitment therapy, and mindfulness-based interventions are used to deal with FCR⁴⁵. Individual needs and preferences should be taken into consideration while choosing interventions. We recommend that healthcare providers discuss FCR with patients and inform them about the support available.

Study limitations

Several limitations should be noted. First of all, the interviews were conducted by telephone while patients’ facial language could not be observed face to face, which may lead to the omission of data collection. Secondly, because this study adopts a cross-sectional study, the findings can only be used as the preliminary basis for further investigation, and a longitudinal study of FCR is needed to better understand the level of FCR in thyroid cancer patients. Furthermore, some patients reported their feelings at the beginning of treatment, which may cause memory bias. Finally, pregnant women as a special group should be investigated separately in subsequent studies.

Clinical Implications

Being diagnosed with thyroid cancer is regarded as a stressor. The number of study of FCR is limited on quantitative study. Further qualitative study is needed to explore the experience and impact of FCR in pregnant women and family members. Based on the findings of this study, it is suggested to investigate the level of FCR over time and examine dynamic changes. Early identification of triggers is important for helping patients adjust their experience of FCR. More importantly, potential psycho-social treatment options could be tailored to specifically addressed influencing factors for thyroid cancer patients.

This qualitative research analyzed the experience and significance of FCR in thyroid cancer patients. In addition, it is found that FCR contained three themes: disease uncertainty, multiple triggers, and diversified coping strategies. It is suggested to solve these problems to promote the health of thyroid cancer patients. Furthermore, further qualitative research on FCR is needed as quantitative measurement of FCR may not be sufficient to represent the multi-dimensional meaning of this phenomenon.

Author contribution All authors contributed to the study conception and design. Material preparation, data collection, and analysis were performed by Junqing Lin, Nan Xu, Chunrao Zheng and Weixiang Luo. The first draft of the manuscript was written by Geling Lu and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

AUTHOR DISCLOSURE STATEMENT

No competing interests exist. No funds, grants, or other support were received during the preparation of this manuscript.

ETHICS APPROVAL

This study was approved by the Ethics Committee of Shenzhen People's Hospital. The approval number is LL-KY-2022007-01. Informed consent was obtained from all individual participants included in the study. We thank all subjects who participated in this study.

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available from the corresponding author, upon reasonable request.

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Paperák P, Javůrková A, Raudenská J. Therapeutic intervention in fear of cancer recurrence in adult oncology patients: a systematic review [published online ahead of print, 2022 Oct 28]. J Cancer Surviv. 2022;10.1007/s11764-022-01277-x. https://doi.org/10.1007/s11764-022-01277-x

No competing interests reported.

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Fear of cancer Recurrence Despite a good prognosis: A Qualitative study with Thyroid Cancer Patients

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Abstract

Background

Methods

Study sample and setting

Data collection

Data analysis

Ethical considerations

Results

Theme 2: Triggers of FCR

Theme 3: Coping strategies

Discussion

Study limitations

Clinical Implications

Conclusions

Declarations

References

Additional Declarations

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