Anxiety and Fear of Recurrence Despite a Good Prognosis: An Interview Study with Differentiated Thyroid Cancer Patients

Abstract

Background:

Despite a good prognosis, fear of recurrence is prevalent, even several years after a diagnosis of differentiated thyroid cancer (DTC). For this reason, the aim of this study was to make an in-depth exploration of anxiety, sources of anxiety, and protective strategies.

Methods:

In order to capture a broad description of the phenomenon, a purposeful, maximum variation sampling strategy regarding age, sex, stage of disease, educational level, and time since diagnosis was used. In total, 21 patients were included in the study. Semi-structured interviews were tape-recorded, transcribed verbatim, and analyzed with a qualitative content analysis.

Results:

Patients with and without recurrences narrated a picture indicating anxiety related to their current situation; future risks and threats were central to this picture. However, they initially minimized or even denied having anxiety, but subsequently described it as a major problem at the end of the interviews. Anxiety was related to risk of recurrence and the risk of developing other cancers, but also to fears of a future situation where no further treatment options were available. Previous experiences of delayed investigations added to these fears. In order to cope, patients developed protective strategies in order to keep evasive and frightening thoughts away. Everyday life, distractions, and focusing on “the small things in life” were examples of such strategies.

Conclusions:

Anxiety is a common, although partially hidden, problem in DTC survivors, as they tended to deny it early in the dialogues. As anxiety is clearly related to follow-up routines, these should therefore be revaluated.

Introduction

Although differentiated thyroid cancer (DTC) has a favorable prognosis, life-long follow-up and medication might be needed (1). The majority of patients have no change in life-span (2), but they still have a long-term risk of recurrence, even after 10 years (3). Thus, patients will be reminded of their cancer far beyond the first five years, which may affect both their anxiety and the level of their health-related quality of life (HRQoL) (4). Previous studies regarding HRQoL in DTC patients have shown conflicting data with HRQoL at the same level as the general population but also at lower levels (5,6). It has previously been demonstrated that HRQoL is lower in Swedish patients with DTC compared to the general population (7). Half of the patients in that study had a fear of recurrence, although they did not have any sign of disease, and patients with this fear also had significantly lower HRQoL compared to patients without it (7).

Previous data on HRQoL in thyroid cancer are mainly based on quantitative questionnaires, whereas the subjective experience of the disease has not been explored in depth. To the authors' knowledge, only a few qualitative studies exist about anxiety and worry in thyroid cancer, and in these studies, the experience of the disease trajectory and fear of recurrence is sparsely described (8 –10). The subjective experience of having DTC might leave patients with conflicting feelings. They are informed about having a “good” cancer, yet they still have worries and a fear of recurrence (11). In addition, patients also reported a perceived lack of information regarding treatment, follow-up procedures, and long-term side effects, which caused insecurity (9,12).

When using quantitative questionnaires that are psychometrically tested, reliability is obviously a strength, as the items have, as a rule, been tested and retested. Validity might be strong, but a drawback is that the respondents are only allowed to answer predefined questions. For an individual patient, questions not covered by the questionnaire might be of high relevance and therefore missed. Moreover, questionnaires do not allow personalized follow-up questions. For this reason, qualitative in-depth interviews constitute a viable complement in order to explore a phenomenon in depth.

Based on a recent, quantitative study, anxiety and fear of recurrence are a much more common problem than expected (7). The aim of this study was therefore to make an in-depth exploration of anxiety, sources of anxiety, and protective strategies.

Materials and Methods

Study sample and setting

Participants were patients with DTC treated and under follow-up at the Department of Oncology at Karolinska University Hospital in Stockholm, Sweden, which serves the entire county of Stockholm (2.2 million inhabitants), with specialized care for thyroid cancer patients. Study participants were eligible if they were >18 years of age and were fluent in Swedish. In this study, 21 patients were selected through purposeful maximum variation sampling (13) regarding age, sex, stage of disease, education, and time since diagnosis. The number of participants was determined based on “saturation”, that is, a sense of closure that occurs when data collection ceases to provide substantial new information and when patterns in the data become evident. During the interviews, saturation was achieved after 15 interviews. To accomplish maximum variation, interviews continue with further patients to ensure that no new aspects emerged, which was not the case.

All patients were previously treated with thyroidectomy and radioiodine. None of the patients declined to participate. Verbal informed consent was obtained both before and after the interviews.

Data collection

Data were gathered by semi-structured interviews that were audio-recorded and transcribed verbatim. The interview guide included questions regarding the experience of living with thyroid cancer. Examples of initial questions were: “Has something changed after your cancer diagnosis?” “Has your view on life changed?” and “How have you experienced your disease from diagnosis until today?” When needed, follow-up questions were posed. The interviews were carried out by two interviewers and lasted for 20–65 minutes.

Data analysis

A qualitative conventional content analysis, as described by Hsieh et al., was chosen, as this type of design is usually appropriate when existing theory or research literature on a phenomenon is limited (14). The analysis was performed by two of the authors (C.H. and P.S.) as follows. The interviews were read through several times in order to become acquainted with the content. They were then reread systematically to identify meaning units, that is, words or text segments, patterns of meaning, and issues of potential interest with reference to the research question (in this analysis, the focus was on anxiety and protective strategies). The segments were also marked with a preliminary code. In a third step, those segments marked with similar codes were brought together and formed meaningful clusters (i.e., preliminary categories). As far as possible the actual words expressed by the informants were used. Next, the statements in each preliminary category were scrutinized and compared to find the central component and then fused into categories. The final categories were then compared to avoid obvious overlapping, and in a last step, the categories were compared and analyzed in order to reveal possible relationships or hierarchies between them.

Trustworthiness

During the interviews, a dialogical validation was used (15): similar questions were put in different ways in order to ensure that the informant's view was correctly captured. Furthermore, dialogical intersubjectivity was aimed at, meaning that the authors analyzed relevant interview segments separately and compared their findings (16). In case of any discrepancies, these were discussed, revised, and validated in discussion with the other author. This was done by supplementing and contesting each other's readings as a part of the reflexivity process (17,18). Finally, common descriptions were formulated. The aim was not to reach a consensus but to find possible alternative interpretations (18). Validity was also established by providing quotes from the interviews as examples of explicated meanings and to illustrate the categories (13).

Ethical considerations

The study was approved by the Regional Ethical Review Board in Stockholm (2011/718-31/2 and 2014/1736-32). Verbal informed consent was obtained before and after finishing each interview.

Results

Altogether, 21 patients were interviewed. Their ages ranged from 24 to 77 years (M _age = 49 years), and 13/21 (62%) patients were women. Five had locoregional or metastatic disease, and two additional patients had remaining levels of the tumor marker thyroglobulin (Tg), indicating persisting disease. All the patients were primarily treated with thyroidectomy and radioactive iodine (RAI). The time from primary diagnosis varied from 3 months to 18 years (Table 1).

Table 1.

Characteristics of 21 Patients with DTC Interviewed in Sweden

	Number (%)
Mean age (range), years	49 (24–77)
Sex
Male	8 (38)
Female	13 (62)
Educational level
Low (elementary school ≤9 years)	1 (5)
Middle (secondary school 10–12 years)	5 (24)
High (university >12 years)	15 (71)
Diagnosis
PTC	15 (71)
FTC	6 (29)
Time since diagnosis
Mean	4 years
Range	3 months–18 years
Primary treatment
Total thyroidectomy	21 (100)
Radioiodine treatment	21 (100)
Recurrence
No	14 (66)
Yes, abnormal Tg	2 (10)
Yes, lymph node metastases	1 (5)
Yes, metastatic disease	4 (19)

DTC, differentiated thyroid carcinoma; PTC, papillary thyroid carcinoma; FTC, follicular thyroid carcinoma; Tg, thyroglobulin.

Many of the responses in the interviews were related to anxiety and the potential risk of recurrence, conscious or unconscious strategies in order to handle anxiety, and the consequences of living with a history of thyroid cancer and the associated uncertainty.

Anxiety

Several informants, both with and without known recurrences, openly stated that they felt anxious not only about their actual situation but especially about future risks and threats. Moreover, anxiety was not restricted to a certain age, sex, education level, or time since diagnosis (i.e., our groups when planning for a maximum variation sampling). In some cases, the expressed anxiety was vague; in other cases, it was most pronounced. A few informants even described how worries and anxiety produced physical manifestations in their bodies:

“I feel nervous [about the cancer] and I even feel it in my body.” (Young patient with a previous recurrence)

Present anxiety was related to, and triggered by, examinations and planned follow-ups, as there was always a potential risk of diagnosing a recurrence. After a successful examination with no new findings, the anxiety level temporarily decreased, but it increased again close to the next follow-up visit.

“I am a little anxious before the visits. It is a relief to leave the hospital with positive information about the disease. It is good to see the doctor regularly.” (Middle-aged woman without a recurrence)

“I have built up an extreme fear of visits to the hospital … [I felt] I couldn't even walk over the doorstep, I couldn't even drive to the parking lot.” (Young woman without a recurrence)

A few patients also described persisting anxiety in situations where laboratory tests had shown remaining increased levels of thyroglobulin, even in situations where further examinations ruled out a recurrence. A perceived lack of information and uncertainty about future treatments were major triggers of anxiety, especially in patients with current or proven persistent disease.

Anxiety related to future events was not limited to the risk of recurrence, but was also associated with frightening thoughts about a possible future with progression where treatments were no longer possible. A fear of other forms of cancer was also expressed. Some informants, both with and without a recurrence, mentioned the word “die” or “death,” and among those not explicitly using the word “die,” the underlying meaning was still obvious.

“There is this constant worry [about the disease], I can't feel entirely calm, as I did before.” (Young patient without a recurrence)

Contradictions: hidden anxiety

Some of the patients minimized or even denied having anxiety at the beginning of the interviews. On direct inquiries, they tended to relate their worries to more concrete problems such as their finances, work, and side-effects from the levothyroxine treatment. However, during the interview, there was a successive change. They started to mention their cancer as one source of anxiety, and in some cases, they eventually concluded that the cancer was in fact a major trigger for it and that the anxiety was present every day.

Initially:

“…I wouldn't say it [the cancer] affects me.”

Later in the same interview:

“…[of course] everything, also my cancer, contributes to my worries.”

At the end of the interview:

“It [worries and anxiety over her cancer] is of course present all the time.” (Young patient with a recurrence)

Initially:

“Nothing in life is worse because of this [the cancer].”

Later:

“I get stressed easier than before … My friends think something is bothering me.”

At the end of the interview:

“Last year I was on sick leave for two months because of depression and thoughts about suicide.” (Young patient with a previous recurrence)

Distrust as a source of anxiety

Several patients described that distrust in the healthcare system was a source of increased anxiety for them. The distrust was often founded in previous experiences, for example repeated contacts with the healthcare system and even years of waiting before their initial fear and worries about a lump in their neck or the vague symptoms they had were eventually diagnosed as a thyroid cancer. Intrusive thoughts about a future recurrence or progression of the disease that would be overlooked or delayed also created anxiety, which was especially true in patients with previous recurrences.

“What happens if they don't detect the next recurrence, they don't know where or how they should look for the recurrence…?” (Young patient with a previous recurrence)

In addition, an unpleasant experience in combination with lack of information about the treatment when receiving the initial diagnosis affected the patient's future relationship with doctors and was a reason for distrust. A perceived lack of information increased anxiety. Moreover, some patients felt that doctors were giving evasive answers to their questions and did not want to tell the whole truth about their disease, which increased their anxiety. Lack of continuity among doctors also created insecurity and added to the patient's feelings of anxiety.

“Why are they not telling me [about the results of examinations] or do they not want to tell me? … What are they looking for or what are they worried about?” (Young patient with a previous recurrence)

“It feels like the doctors know much more than they want to say about food and other things. They have access to more information, but that information is not presented to me. They seem to have strict orders about what to say and what not to say.” (Young man without a recurrence)

Protective strategies

Everyday life, routines, and strategies

Everyday life and routines emerged as important strategies for the patients to help prevent intrusive and frightening thoughts about their disease. In most cases, this was a conscious strategy, and the informants described in detail how everyday routines and worries of a more general character made them forget about their cancer. To several informants, it was important to keep their mind occupied and to enjoy small everyday things so as to avoid thoughts of the disease. In addition, working and spending time with their children were described as ways of forgetting the disease. Several patients described how they needed a “vacation” from their cancer. Avoiding contact with the healthcare system for shorter periods helped them gather energy to cope with their disease.

“There might be an underlying worry, but I don't think of that [the cancer disease] everyday, otherwise I can't live.” (Young patient with a recurrence)

“It has been very good [to have a small child and a lot to do at work] that there has been a lot to do, so that I haven't had time to worry.” (Young patient without a recurrence)

“I try to avoid thoughts about the cancer. It is important to have these everyday routines, and to have people around me who I like and who like me.” (Young patient with a recurrence)

Information and control

Information was described as an important part of coping with the disease. In general, clear-cut information created a sense of control, which resulted in decreased levels of anxiety. Several informants described that they wanted to know the results of investigations immediately, and that they also wanted all possible information to be given to them. One problem mentioned was the best way to receive the information. Telephone calls were a fast way, but during a personal meeting, more questions could be answered. As a rule, detailed information decreased anxiety, and this was also the case in situations where stressful information about the treatment or about tumor progression was delivered by the doctors.

“The doctor told me: you are going home to them [my three children] and you will live a long life with them and you are not going to die from this disease.” (Young woman without a recurrence)

“…The treatment has been exactly as the doctor told me … the information was exact, which I think is fantastic. Very, very good information.” (Middle-aged man without a recurrence).

Discussion

Although the interview guide focused on general questions such as how patients had experienced their disease from diagnosis until today, several of the respondents still spontaneously narrated a situation where anxiety played a significant role in their everyday lives, regardless of the time from diagnosis, clinical status, age, sex, or other social variables.

Anxiety

Anxiety is known to be common among cancer patients, both in those cured from their disease and in those with metastatic cancer (19 –22). In general, anxiety varies over time (23), and is correlated with a fear of recurrence (24 –26), disease progression, and a fear of developing another cancer (27), which was also a main finding in these interviews.

Anxiety varies among cancer types, and surprisingly, the prevalence of anxiety and depression is higher for thyroid cancer patients than for several other diagnoses with a poorer prognosis (22). From a doctor's point of view, DTC is a cancer with a good or even excellent prognosis and is often communicated to patients as a “good cancer” (11,28). Obviously, this is not in agreement with the patients' subjective experiences. Not only anxiety but also DTC patients' overall quality of life is similar to that of patients with other cancers such as glioma, or colon or gynecologic cancer (29).

In this study, some degree of anxiety was described by a majority of the respondents, regardless of the stage of disease. In addition, fear of recurrence was a common experience, in good correlation with previous studies (7,30,31). In fact, when compared to cancer patients with more aggressive forms of cancer, thyroid cancer survivors have comparable levels of fear of recurrence (31,32). Thus, anxiety might not only depend on the real threat, but also on subjective expectations of a threat (7). In this study, patients were included who were treated with total thyroidectomy and radioiodine treatment. In the future, more patients will have less aggressive treatment, according to new guidelines. Although less aggressive treatment might give fewer side effects, it is not known whether such changes will affect the level of anxiety. A reasonable guess is that the levels will remain similar, as prognosis and treatment intensity are not the main predictors of anxiety (31,32).

The patients' anxiety for the future was not limited to the risk of recurrence, but also encompassed fears of developing other types of cancer, and most importantly, the anxiety was related to frightening thoughts about possible future tumor progression with no further treatment options available. Even if they avoided words such as “die” or “death,” their narrations of possible cancer trajectories with an incurable disease were obviously related to hidden death anxiety, which may add to their experience of general depression and anxiety (33).

Another important finding was the association between anxiety and the follow-up procedures. Increasing anxiety around planned follow-ups has been shown in several cancer diagnoses (34,35), and this could be one explanation for the anxiety experienced by thyroid cancer patients. The knowledge of the remaining risk of recurrence even decades after the initial diagnosis (3) might increase anxiety surrounding follow-ups. For this reason, individualized follow-ups and avoiding frequent visits could be ways of decreasing anxiety in thyroid cancer patients, especially according to the longevity and often slow progression of the disease.

Contradictions

Several patients in this study denied anxiety and worries about cancer in the beginning, while admitting it later in their interviews. Anxiety might be such a sensitive matter that participants initially deny it, even in an interview situation, but as they become more comfortable, they are willing to express even difficult thoughts about the disease. In a previous cancer study, such contradictions were obvious: cancer patients denied anxiety one moment but openly talked about death and death anxiety in the next sentence (36).

For healthcare professionals, this way of communicating is important to bear in mind, as hidden anxiety might be missed during a short consultation. Previous studies about patient–physician communication in oncology show that medical issues are extensively discussed but that symptoms such as anxiety are discussed to a lesser extent (37). This could be even more pronounced in thyroid cancer because patients perceive their disease as a “good cancer” (11), which could decrease their willingness to bring up psychosocial problems with their physicians. This assumption was corroborated in a recent study: being labelled as a patient with a “good cancer” created confusion when individual experiences varied from expectations. In that study, they even described feeling the “good cancer” characterization invalidating their fears (28). Thus, actively asking patients about emotional issues could be recommended to healthcare providers.

The results about anxiety reflect the perception of the patients, which is an important contribution to our understanding of our patients' situation. However, in a future study, it would be interesting to deepen our knowledge of the doctor–patient interaction by interviewing both patients and their doctors. Such an approach would provide further understanding regarding communication about a prognosis that is “good” but “uncertain.”

Distrust

Distrust of the healthcare system is not always dependent on the actual situation. Rather, it can be based on previous experiences such as a delayed diagnosis or previous negative experiences. This was also shown in this study, where respondents feeling distrustful had often felt dismissed by physicians in the past.

In addition, the respondents in this study stated that distrust was also related to a lack of information or evasive answers given by their physicians. This is of importance, since the patient–physician relationship has been strongly associated with patient satisfaction and adherence with treatment (38), and the most significant predictor of patient involvement in medical care is trust in the medical profession (39). Thus, situations concerning distrust should be taken seriously, as any distrust felt might affect the willingness of patients to follow medical recommendations and treatments.

Protective strategies

Several respondents described how everyday activities and keeping their mind occupied helped them to avoid thinking about their disease. Such activities are in good agreement with Weisman's classical study on coping with cancer (40). Seeking information, enjoying the “small things in life,” spending time with their families and friends, and even having a wish to take a vacation from their disease were other examples of coping strategies.

A striking finding in this and other studies was that coping with cancer has both cognitive and emotional components (41,42) and that strategies differ between patients (43). The differences in coping strategies between individuals can, for example, be related to a positive or negative view on life (44) and to the ability of finding hope and meaning in a difficult situation (45). To have a good understanding of coping strategies might help structuring the communication of healthcare professionals with patients, and in the end, it might decrease patients' anxiety and even increase their quality of life.

Methodological considerations

As anxiety is seldom explored in depth in DTC patients, maximum variation sampling (13) was chosen in order to capture a broad description of the phenomenon, that is, including aspects that might be related to a certain age, stage, level of education, or time from diagnosis. Despite this sampling strategy, anxiety was frequently mentioned by the respondents. For this reason, the data should be transferable to a similar group of patients.

Conclusion

Anxiety is a common finding in DTC patients, regardless of sociodemographic factors and time from diagnosis, and it is a common problem in patients both with and without a recurrence. This anxiety is easily missed, as the patients tend to minimize the problem at the beginning of an interview. As the present findings indicate that anxiety is associated with follow-ups, the routines for those DTC patients with the best prognosis should be revaluated. As anxiety was apparent both in newly diagnosed patients and in patients after a long follow-up, early recognition of mood disturbances with evaluated measurement tools should be considered. Those in need of psychosocial support should be offered counseling to cope with anxiety, regardless of tumor aggressiveness. In addition, individualized routines with different follow-up intervals depending on patient requests should be a possibility for low-risk patients not needing frequent checkups. Such measures might decrease unnecessary anxiety.

Footnotes

Acknowledgments

This work was supported by grants from The Cancer Research Foundations of Radiumhemmet; Serafimerlasarettet Foundation; Capio research Foundation, Foundation Stiftelsen för Kirurgiskt samarbete, Swedish Society of Medicine and Stockholm County Council. The manuscript was proofread by David Boniface.

Author Disclosure Statement

No competing financial interests exist.

References

Haugen

BRM

, Alexander

, Bible

, Doherty

, Mandel

, Nikiforov

, Pacini

, Randolph

, Sawka

, Schlumberger

, Schuff

, Sherman

, Sosa

, Steward

, Tuttle

RMM

, Wartofsky

. 2016. 2015 American Thyroid Association management guidelines for adult patients with thyroid nodules and differentiated thyroid cancer: the American Thyroid Association Guidelines Task Force on Thyroid Nodules and Differentiated Thyroid Cancer. Thyroid, 26:1–133.

Chen

, Jemal

, Ward

. 2009. Increasing incidence of differentiated thyroid cancer in the United States, 1988–2005. Cancer, 115:3801–3807.

Grogan

, Kaplan

, Cao

, Weiss

, Degroot

, Simon

, Embia

, Angelos

, Kaplan

, Schechter

. 2013. A study of recurrence and death from papillary thyroid cancer with 27 years of median follow-up. Surgery, 154:1436–1446; discussion 1446–1437.

Hoftijzer

, Heemstra

, Corssmit

, van der Klaauw

, Romijn

, Smit

. 2008. Quality of life in cured patients with differentiated thyroid carcinoma. J Clin Endocrinol Metab, 93:200–203.

Husson

, Haak

, Buffart

, Nieuwlaat

, Oranje

, Mols

, Kuijpens

, Coebergh

, van de Poll-Franse

. 2013. Health-related quality of life and disease specific symptoms in long-term thyroid cancer survivors: a study from the population-based PROFILES registry. Acta Oncol, 52:249–258.

Malterling

, Andersson

, Falkmer

, Nilehn

, Jarhult

. 2010. Differentiated thyroid cancer in a Swedish county—long-term results and quality of life. Acta Oncol, 49:454–459.

Hedman

, Djarv

, Strang

, Lundgren

. 2016. Determinants of long-term quality of life in patients with differentiated thyroid carcinoma—a population-based cohort study in Sweden. Acta Oncol, 55:365–369.

Gallop

, Kerr

, Simmons

, McIver

, Cohen

. 2015. A qualitative evaluation of the validity of published health utilities and generic health utility measures for capturing health-related quality of life (HRQL) impact of differentiated thyroid cancer (DTC) at different treatment phases. Quality Life Res, 24:325–338.

Sawka

, Goldstein

, Brierley

, Tsang

, Rotstein

, Ezzat

, Straus

, George

, Abbey

, Rodin

, O'Brien

, Gafni

, Thabane

, Goguen

, Naeem

, Magalhaes

. 2009. The impact of thyroid cancer and post-surgical radioactive iodine treatment on the lives of thyroid cancer survivors: a qualitative study. PloS One, 4:e4191.

10.

Misra

, Meiyappan

, Heus

, Freeman

, Rotstein

, Brierley

, Tsang

, Rodin

, Ezzat

, Goldstein

, Sawka

. 2013. Patients' experiences following local-regional recurrence of thyroid cancer: a qualitative study. J Surg Oncol, 108:47–51.

11.

Easley

, Miedema

, Robinson

. 2013. It's the “good” cancer, so who cares? Perceived lack of support among young thyroid cancer survivors. Oncol Nurs Forum, 40:596–600.

12.

Sawka

, Straus

, Rodin

, Heus

, Brierley

, Tsang

, Rotstein

, Ezzat

, Segal

, Gafni

, Thorpe

, Goldstein

. 2015. Thyroid cancer patient perceptions of radioactive iodine treatment choice: follow-up from a decision-aid randomized trial. Cancer, 121:3717–3726.

13.

Patton

. 2015. Qualitative Research and Evaluation Methods: Integrating Theory and Practice. SAGE, Thousand Oaks, CA.

14.

Hsieh

, Shannon

. 2005. Three approaches to qualitative content analysis. Qual Health Res, 15:1277–1288.

15.

Kvale

. 1989 To validate is the question. In: Kvale

(ed) Issues of Validity in Qualitative Research. Studentlitteratur, Lund, Sweden, pp 73–92.

16.

Morse

. 1994 Designing funded qualitative research. In: Denzin

, Lincoln

(eds) Handbook of Qualitative Research. SAGE, London, pp 220–235.

17.

Malterud

. 2001. Qualitative research: standards, challenges, and guidelines. Lancet, 358:483–488.

18.

Graneheim

, Lundman

. 2004. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today, 24:105–112.

19.

Watts

, Leydon

, Birch

, Prescott

, Lai

, Eardley

, Lewith

. 2014. Depression and anxiety in prostate cancer: a systematic review and meta-analysis of prevalence rates. BMJ Open, 4:e003901.

20.

Watts

, Prescott

, Mason

, McLeod

, Lewith

. 2015. Depression and anxiety in ovarian cancer: a systematic review and meta-analysis of prevalence rates. BMJ Open, 5:e007618.

21.

Mitchell

, Ferguson

, Gill

, Paul

, Symonds

. 2013. Depression and anxiety in long-term cancer survivors compared with spouses and healthy controls: a systematic review and meta-analysis. Lancet Oncol, 14:721–732.

22.

Brintzenhofe-Szoc

, Levin

, Li

, Kissane

, Zabora

. 2009. Mixed anxiety/depression symptoms in a large cancer cohort: prevalence by cancer type. Psychosomatics, 50:383–391.

23.

Thalen-Lindstrom

, Glimelius

, Johansson

. 2017. Development of anxiety, depression and health-related quality of life in oncology patients without initial symptoms according to the Hospital Anxiety and Depression Scale—a comparative study. Acta Oncol, 56:1094–1102.

24.

Simard

, Thewes

, Humphris

, Dixon

, Hayden

, Mireskandari

, Ozakinci

. 2013. Fear of cancer recurrence in adult cancer survivors: a systematic review of quantitative studies. J Cancer Surviv, 7:300–322.

25.

Deimling

, Bowman

, Sterns

, Wagner

, Kahana

. 2006. Cancer-related health worries and psychological distress among older adult, long-term cancer survivors. Psychooncology, 15:306–320.

26.

Deimling

, Brown

, Albitz

, Burant

, Mallick

. 2017. The relative importance of cancer-related and general health worries and distress among older adult, long-term cancer survivors. Psychooncology, 26:182–190.

27.

Koch

, Jansen

, Brenner

, Arndt

. 2013. Fear of recurrence and disease progression in long-term (≥5 years) cancer survivors—a systematic review of quantitative studies. Psychooncology, 22:1–11.

28.

Randle

, Bushman

, Orne

, Balentine

, Wendt

, Saucke

, Pitt

, Macdonald

, Connor

, Sippel

. 2017. Papillary thyroid cancer: the good and bad of the “good cancer.”. Thyroid, 27:902–907.

29.

Applewhite

, James

, Kaplan

, Angelos

, Kaplan

, Grogan

, Aschebrook-Kilfoy

. 2016. Quality of life in thyroid cancer is similar to that of other cancers with worse survival. World J Surg, 40:551–561.

30.

Sawka

, Tsang

, Brierley

, Rotstein

, Segal

, Ezzat

, Goldstein

. 2016. Concerns of low-risk thyroid cancer survivors. Acta Oncol, 55:1252–1253.

31.

Bresner

, Banach

, Rodin

, Thabane

, Ezzat

, Sawka

. 2015. Cancer-related worry in Canadian thyroid cancer survivors. J Clin Endocrinol Metab, 100:977–985.

32.

van de Wal

, van de Poll-Franse

, Prins

, Gielissen

. 2016. Does fear of cancer recurrence differ between cancer types? A study from the population-based PROFILES registry. Psychooncology, 25:772–778.

33.

Gonen

, Kaymak

, Cankurtaran

, Karslioglu

, Ozalp

, Soygur

. 2012. The factors contributing to death anxiety in cancer patients. J Psychosoc Oncol, 30:347–358.

34.

Kew

, Galaal

, Manderville

. 2009. Patients' views of follow-up after treatment for gynaecological cancer. J Obstet Gynaecol, 29:135–142.

35.

Thompson

, Charlson

, Schenkein

, Wells

, Furman

, Elstrom

, Ruan

, Martin

, Leonard

. 2010. Surveillance CT scans are a source of anxiety and fear of recurrence in long-term lymphoma survivors. Ann Oncol, 21:2262–2266.

36.

Adelbratt

, Strang

. 2000. Death anxiety in brain tumour patients and their spouses. Palliat Med, 14:499–507.

37.

Detmar

, Muller

, Wever

, Schornagel

, Aaronson

. 2001. The patient–physician relationship. Patient–physician communication during outpatient palliative treatment visits: an observational study. JAMA, 285:1351–1357.

38.

Fuertes

, Mislowack

, Bennett

, Paul

, Gilbert

, Fontan

, Boylan

. 2007. The physician–patient working alliance. Patient Educ Couns, 66:29–36.

39.

Trachtenberg

, Dugan

, Hall

. 2005. How patients' trust relates to their involvement in medical care. J Fam Pract, 54:344–352.

40.

Weisman

. 1979. Coping with Cancer. McGraw-Hill, New York, NY.

41.

Lazarus

, Folkman

. 1984. Stress, Appraisal and Coping. Springer, New York, NY.

42.

Folkman

. 1997. Positive psychological states and coping with severe stress. Soc Sci Med, 45:1207–1221.

43.

Richardson

, Schuz

, Sanderson

, Scott

, Schuz

. 2017. Illness representations, coping, and illness outcomes in people with cancer: a systematic review and meta-analysis. Psychooncology, 26:724–737.

44.

Winterling

, Wasteson

, Sidenvall

, Glimelius

, Sjoden

, Nordin

. 2006. Relevance of philosophy of life and optimism for psychological distress among individuals in a stage where death is approaching. Support Care Cancer, 14:310–319.

45.

Sand

, Olsson

, Strang

. 2009. Coping strategies in the presence of one's own impending death from cancer. J Pain Symptom Manage, 37:13–22.