SIG & WHAT IS SURVIVORSHIP CARE

 1.1 Who we are.

The IPOS Survivorship Special Interest Group (SIG) was established in June 2020

The Group has been very active in the last 12 months or so. We have:

  • produced information about common challenges during cancer survivorship and collected tools and resources at https://ipos.wildapricot.org/survivorship-special-interest-group 
  • hosted two webinars: on managing sleep problems, and about health behaviours and fear of cancer recurrence (the latter in partnership with the FORwards SIG) – recordings available on the IPOS website https://ipos.wildapricot.org/webcasts
  • completed an audit of survivorship-focussed presentations from the last four World Congress meetings
  • begun an audit of national cancer control plans to ascertain national positions on psycho-oncology and survivorship
  • commenced work on an international survey of current psycho-oncology practices in the post-treatment survivorship phase

For more information, please check out the public and members only sections of the IPOS website

Or email [email protected] (current SIG chair)


1.2 What is survivorship (care).

Cancer survivorship (care) has been defined in different ways, ranging from the moment of diagnosis, to primarily focusing on post-treatment survivorship care. Our current focus will be on survivorship issues in the post-treatment phase of the cancer trajectory. Therefore, cancer survivorship (care) focuses on the health and well-being of people with cancer after they have completed their initial cancer treatment. This includes the physical, developmental, psychological, social, and financial effects of cancer that continue through cancer survivors’ post-treatment life. Below, we provide an overview of the most common survivorship challenges, information on current clinical practice in different parts of the world, together with links to relevant research being carried out by IPOS members. We strive to continually update this information and welcome contributions regarding the practice and research of cancer survivorship in your country.  

SECTION 2: COMMON CHALLENGES DURING CANCER SURVIVORSHIP

2.1 Physical and functional health challenges

Fatigue

Cancer survivors commonly experience fatigue, related to their cancer diagnoses as well as the long-term and side effects of cancer treatment. While epidemiological statistics are lacking at the international level, one large sample study have reported an average rate of 29% cancer survivors reporting significant fatigue, with breast (40%) and colorectal (33%) cancer survivors having the highest fatigue rate (Jones et al., 2016). Virtually every modality used to treat cancer may cause fatigue, as can complications of the disease such as sleep disturbances, infections, malnutrition, hypothyroidism, and anemia. It is important to note that fatigue related to cancer is different from that healthy people feel, as characterized by cancer-related fatigue often cannot be completely relieved by sleep and relief.  

Evaluation of cancer-related fatigue should include a cancer survivors’ comprehensive health history (including complete medication list), a physical examination, diagnostic laboratory evaluation, and measurement of a cancer survivor’s fatigue, pain, depression, anxiety, and sleep disturbance. Common fatigue measures include: Brief Fatigue Inventory (BFI); Cancer Fatigue Scale (CFS); 10-item Edmonton Symptom Assessment System; and many others that are included in the study by Barsevick and colleagues (2010) and in a systematic review study of scales used for the measurement of cancer-related fatigue (Minton & Stone, 2009).

There exists a wealth of resources on the treatment and management of cancer-related fatigue. We provide a list of these resources for practitioners, researchers, and cancer survivors for further reading (in Alphabetical order):

Additional Readings in Cancer-Related Fatigue:

Pain

Pain is one of the most common symptoms that people with cancer experience, both during cancer treatment and post-treatment survivorship. Persistent or chronic pain is one of the commonest complaints, arising from the tissue damage caused by the original neoplasm, consequences of surgery and other therapies, as well as multimorbidity with other health conditions (Boland, & Ahmedzai, 2017). According to a study published in JAMA Oncology, researchers reported about 1 in 3 cancer survivors reported having chronic pain, and 1 in 6 reported suffering from high-impact chronic pain that restricts daily functioning (Jiang et al., 2019). Pain affects all areas of a person's life, reactions may include: difficulty experiencing pleasure and happiness; anxiety; depression, distress, insomnia, changing roles in family or society. Thus, a patient with pain may need a wide range of support and care.

Management of pain for cancer survivors largely include: 1) Pharmacological management; 2) Implantable devices; and 3) Acupuncture, among others (Brown & Farquhar-Smith, 2017), massage, relaxation and breathing, diversion of attention, guided imagery, mindfulness meditation, music therapy, art therapy. 

There is a difference between acute and chronic cancer-associated pain (lasting more than 3 months). In the first case, medical examination and pharmacological treatment may be sufficient. In the case of chronic pain, a more comprehensive approach is needed. Patients with chronic pain should definitely report this to their doctor. Pain is not an inevitable part of the disease. 

Additional guidelines and resources for cancer pain management is presented at the bottom of this section. 

Measurement of cancer pain can be challenging due to the complexity of its origins and the biological, psychological, social, and cultural influence on its perception (Cluxton, 2019). Assessment of cancer pain entails a thorough history of both the pain and the underlying malignancy, as well as the treatment course. Pain rating scales are subjective, which is why it is so important not to underestimate pain when taking questionnaires. The medical staff can help better if they are fully knowledgeable. 

Commonly used pain assessment tools for cancer patients and survivors include: 1) Brief Pain Inventory (long form); 2) Brief Pain Inventory (short form); 3) the McGill Pain Inventory - short form; and 4) the Wong-Baker FACES Pain Rating Scale. (Other related measures can be found at the National Palliative Care Research Center)

Resources for Cancer Pain Assessment and Management:

Managing Cancer Pain at Home by American Cancer Society

Treating Cancer Pain by Memorial Sloan Kettering Cancer Center

Cancer Pain Control by National Cancer Institute

Cancer Pain Management by MD Anderson Cancer Center

Pain by Peter MacCallum Cancer Centre

Additional Reading:

  1. Gallaway MS, Townsend JS, Shelby D, Puckett MC. Pain Among Cancer Survivors. Prev Chronic Dis 2020;17:190367. DOI: http://dx.doi.org/10.5888/pcd17.190367 
  2. Gordon DB, Dahl JL, Miaskowski C, McCarberg B, Todd KH, Paice JA, Lipman AG, Bookbinder M, Sanders SH, Turk DC, Carr DB. American pain society recommendations for improving the quality of acute and cancer pain management: American Pain Society Quality of Care Task Force. Archives of internal medicine. 2005 Jul 25;165(14):1574-80. 
  3. Kwon JH. Overcoming barriers in cancer pain management. Journal of Clinical Oncology. 2014 Jun 1;32(16):1727-33. 
  4. Schug SA, Zech D, Dörr U. Cancer pain management according to WHO analgesic guidelines. Journal of pain and symptom management. 1990 Feb 1;5(1):27-32.
  5. Money S, Garber B. Management of cancer pain. Current Emergency and Hospital Medicine Reports. 2018 Dec;6(4):141-6. 

Sex and intimacy

One of the difficult topics to discuss is sexuality. Changes in sexuality are one of the negative factors that affect the quality of life of a cancer survivor. Sexuality includes various aspects, such as our relationship with a partner, and feelings of femininity or masculinity that sometimes arise during cancer treatment.

According to Leslie Shover, 50% of women (breast or gynecological cancer) and 60 to 90% of men (prostate cancer) have long-term sexual dysfunction; estimates for other cancers are less well documented. Sexual problems often become more evident or worrisome during the first months after active treatment ends. Their consequences can be: emotional distress, apathy and loss of self-confidence, asexuality or unwillingness. Patients whose capacity for intercourse has decreased may mourn this loss and experience feelings of guilt, lack of satisfaction, and frustration (Hawkins et al. 2009).

Potential reductions in sexual contact (a form of social support) can lead to feelings of isolation, making recovery more difficult (Weimar Schultz and Van de Ville, Sexuality, Intimacy and Gynecologic Cancer, 2003). 

Patients may have serious concerns about the effect of treatment on their fertility and reproductive capacity.

Factors That Affect Sexuality and Intimacy:

Pain, weakness, anatomical changes (mastectomy, surgical removal of testicles, ovaries), wounds/scars, ostomy or catheter placements, loss of sensitivity, incontinence, fatigue, loss of sexual desire, decreased frequency of intercourse, erectile dysfunction, vaginal pain, hair loss, premature menopause, hot flashes, night sweats, breast development and weight gain in men, loss of erotic dreams and fantasies, decreased libido, suicidal ideation 

The interdisciplinary sex team includes: 

• Mental health professional trained as a sex therapist familiar with cancer and treatment issues

• The gynecologist is well-versed in issues of female sexual dysfunction, post-treatment pelvic pain, fertility and hormonal treatments

• A urologist or general practitioner who specializes in men's health and is familiar with medical and surgical treatments for male sexual dysfunction

• Rehabilitation specialist helping patients to resume physical activity

• A physical therapist who will advise on such issues as the best positions for sexual contact

Resources:

https://www.cancer.gov/about-cancer/treatment/side-effects/sexuality-women 

https://www.cancer.gov/about-cancer/treatment/side-effects/sexuality-men

https://www.cancer.gov/about-cancer/treatment/side-effects/fertility-men

https://www.cancer.gov/about-cancer/treatment/side-effects/fertility-women

Sexuality https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fertility-and-sexual-side-effects/how-cancer-affects-sexuality.html

Sexuality for the Woman with Cancer https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fertility-and-sexual-side-effects/sexuality-for-women-with-cancer.html

Sexuality for the Man with Cancer https://www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/fertility-and-sexual-side-effects/sexuality-for-men-with-cancer.html

Sexuality Assessment Tools and Surveys

Female Sexual Function Index 

International Index of Erectile Function (15-item index)

Cancer Rehabilitation and Evaluation System Short form

Premature Ejaculation Diagnostic Tool (5-item index)

Sleep problems 

Sleep problems include insomnia, excessive sleepiness, as well as sleep-related breathing problems (Howell et al., 2014). Difficulty with sleep is a commonly-reported issue, affecting between 25 and 60% of survivors (Jefford et al., 2017). Major variation in the definition and assessment of sleep problems makes an accurate assessment of prevalence, problematic. In cancer patients, causes of insomnia are multifactorial and include predisposing, precipitating and perpetuating factors (Fiorentino & Ancoli-Israel,  2007; Howell et al., 2014).Predisposing factors include older age, history of anxiety or mood disorder, and female gender. Precipitating factors include cancer treatments that upset normal circadian rhythm and sleep-wake cycle, co-existing symptoms such as distress, pain and fatigue, treatment side effects, hospitalisation, and use of medications such as corticosteroids. Perpetuating factors include long-term or inappropriate use of medications, and excess daytimes sleeping. Insomnia is associated with poor quality of life as well as anxiety, depression, poor concentration, memory difficulties, higher rates of pain, use of sedatives, and poor work performance.

Survivors should be screened for sleep problems. Appropriate screening tools include the Insomnia Severity Index, Epworth Sleepiness Scale, Pittsburgh Sleep Quality Index, revised Edmonton Symptom Assessment System, and items from the PROMIS banks. The National Comprehensive Cancer Network (NCCN) provides guidelines on specific questions to ask assessing cancer survivors’ sleeping problems (Denlinger et al., 2014). 

Guidelines recommend sleep hygiene including keeping the sleep environment dark and quiet, avoiding alcohol, caffeine, heavy meals, and exercise before bedtime, exposure to daylight, and including exercise in the morning and early afternoon, though there is minimal date to support this. 

Cognitive behavioural therapy (CBT) is the recommended first-line treatment for chronic insomnia (Savard & Savard, 2017). Several RCTs have shown that CBT improves sleep in cancer survivors. A meta-analysis included 8 studies involving 752 patients (Johnson et al., 2016). CBT resulted in a 15.5% improvement in sleep efficiency, relative to control conditions (6.1%), pre- to post-intervention, with a medium effect size (ES: d = 0.53). Large effect sizes were observed for self-reported insomnia severity (d = 0.77) for those patients assigned to CBT, representing a clinically important reduction. Exercise interventions appear to assist sleep problems, as well as having broad other benefits, though effectiveness in managing insomnia in cancer survivors is uncertain (Mercier, Savard, & Bernard, 2016). Tai Chi may also be an effective treatment, and appears non-inferior to CBT (Irwin et al., 2017).

A number of medications are available to assist with sleep problems. Evidence for their effectiveness is not strong, and many may be associated with dependency and abuse. Furthermore, they may be associated with side effects and potential drug-drug interactions (Sateia et al., 2017). 

Resources:

Managing Sleep Problem by American Cancer Society

Tips for Managing Insomnia During Cancer Treatment by Dana-Farber Cancer Institute

Sleep Disorders (PDQ) - Patient Version by National Cancer Institute

Sleep Problem (Insomnia) in the Cancer Patients by OncoLink University of Pennsylvania

Sleep Issues by Peter MacCallum Cancer Centre

Additional Reading:

  1. Dahiya S, Ahluwalia MS, Walia HK. Sleep disturbances in cancer patients: underrecognized and undertreated. Cleveland Clinic journal of medicine. 2013 Nov 1;80(11):722-32.
  2. Akman T, Yavuzsen T, Sevgen Z, Ellidokuz H, Yilmaz AU. Evaluation of sleep disorders in cancer patients based on Pittsburgh Sleep Quality Index. European journal of cancer care. 2015 Jul;24(4):553-9.
  3. Ancoli-Israel S. Sleep disturbances in cancer: a review. Sleep Medicine Research. 2015 Dec 1;6(2):45-9.
  4. Clevenger L, Schrepf A, DeGeest K, Bender D, Goodheart M, Ahmed A, Dahmoush L, Penedo F, Lucci III J, Thaker PH, Mendez L. Sleep disturbance, distress, and quality of life in ovarian cancer patients during the first year after diagnosis. Cancer. 2013 Sep 1;119(17):3234-41.

2.2 Psychological challenges

Anxiety

Anxiety, in various forms, is common among cancer survivors after cancer treatment ends. Key sources contributing to anxiety among cancer survivors including: 1. Fear of recurrence or developing secondary malignancy; 2. Anxiety associated with no longer seeing the medical team as often as a patient does during treatment; and 3. General health anxiety living an immunocompromised life, among others. Though vary, studies in general report an approximate prevalence rate of 25% survivors with anxiety, ranging from 19 to 31% (Niedzwiedz et al., 2019; Nikbakhsh et al., 2014). Anxiety among cancer survivors is often comorbid with depression, and significantly impacts cancer survivors’ quality of life and general wellbeing (Aminisani et al., 2017; Wikman et al., 2017). Study has also reported that cancer survivors with chronic diseases are more likely to experience comorbid depression and anxiety than their counterparts with no chronic diseases (Yan et al., 2019).

Assessment of anxiety among cancer survivors often occurs in one of the following three ways: 1. Assess anxiety as part of psychological distress; 2. Assess anxiety using tools and measures developed for the general population; and 3. Assess anxiety using tools and measures specifically for cancer patients and survivors. Common psychological distress screening tools and measures include: the Distress Thermometer and Problem List, the Brief Symptom Inventory (BSI), the Brief Symptom Inventory - 18 item (BSI-18), and the Psychosocial Screen for Cancer (PSSCAN). Here is a helpful report that provides “Practical Steps for Developing and Implementing a Comprehensive Distress Screening Program”. Common anxiety assessment tools and measures include: Generalized Anxiety Disorder, 7-item (GAD-7), Beck Anxiety Inventory (BAI), and the Penn State Worry QUestionnaire (PSWQ) among others.

https://www.cancer.gov/about-cancer/coping/feelings/anxiety-distress-hp-pdq#_568

Depression

Like anxiety, depression is also common among cancer survivors and can significantly impair daily functioning and reduce quality of life after the end of cancer treatment. Symptoms of depression include feelings of sadness, hopelessness or emptiness, loss of interest in activities that once brought joy, changes in appetite and sleep patterns, and thoughts of self-harm or suicide. The prevalence of depression has been shown to range from 8% to 24% depending on the cancer population and how depression has been assessed (Walker 2013; Krebber 2014; Mitchell 2013). Cancer survivors have been shown to have an increased risk of depression compared to healthy controls, with the risk being highest within the first year of diagnosis (Hartung 2017; Suppli 2014). Interventions that have been shown to be effective in treating depression in cancer survivors include cognitive behavioral therapy (CBT), mindfulness-based approaches and physical activity (REF). However, many of the studies were carried out in breast cancer survivors and more knowledge is needed on how to support male cancer survivors. 

Measures that have been used to assess symptoms of depression include: the Patient Health Questionnaire (PHQ-9), the Hospital Anxiety and Depression Scale (HADS), the General Health Questionnaire (GHQ-12), the Center for Epidemiological Studies - Depression scale (CES-D), Profile of Mood States (POMS) and the Brief Symptom Inventory (BSI-18). 

Here is a list of online resources for further reading:

Depression - American Cancer Society

Depression - Macmillan Cancer Support

Anxiety and depression -– Peter MacCallum Cancer Center

Depression - Cancer.Net

References

Mitchell AJ, Ferguson DW, Gill J, Paul J, Symonds P. Depression and anxiety in long-term cancer survivors compared with spouses and healthy controls: a systematic review and meta-analysis. The Lancet Oncology. 2013;14(8):721-732.

Hartung TJ, Brähler E, Faller H, et al. The risk of being depressed is significantly higher in cancer patients than in the general population: Prevalence and severity of depressive symptoms across major cancer types. Eur J Cancer. 2017;72:46-53.

Suppli NP, Johansen C, Christensen J, Kessing LV, Kroman N, Dalton SO. Increased Risk for Depression After Breast Cancer: A Nationwide Population-Based Cohort Study of Associated Factors in Denmark, 1998-2011. J Clin Oncol. 2014;32(34):3831-3839.

2.3 Social challenges [including academic and occupational challenges]

Returning to work or study

Almost half of cancers are diagnosed in people of working age below 65 years (Gordon 2011; Short 2005), making returning to work (RTW) an important issue for many cancer survivors. In the US, 60% of working-age cancer survivors report experiencing medical financial hardship and distress (The Cancer Atlas). Returning to (or maintaining) employment following cancer treatment is important for a person’s financial circumstance, but also contributes to a sense of identity, purpose and social connection. As survival rates continue to improve, not being able to return to work also has societal and economic implications in the form of a reduced workforce and productivity. 

However, cancer survivors are 1.4 times more likely to be unemployed than healthy people (de Boer 2015). This may be due to functional limitations due to the physical and psychological effects of cancer and treatment or workplace issues. The work ability of cancer survivors may be substantially impaired in the period after treatment, but generally improves afterwards. Successful RTW requires that working cancer survivors receive practical and emotional support from their workplace. A Cochrane review found that multidisciplinary interventions, which combine physical training, psychoeducation and vocational counseling/training, were effective in helping cancer survivors return to work (de Boer 2015).

Reading resources:

Returning to Work After Cancer Treatment (American Cancer Society)

Making decisions about work after treatment (Macmillan Cancer Support - UK)

Going Back to Work (National Cancer Institute - US)

References

de Boer AGEM, Greidanus MA, Dewa CS, Duijts SFA, Tamminga SJ. Introduction to special section on: current topics in cancer survivorship and work. J Cancer Surviv. 2020 Apr;14(2):101-105

de Boer  AGEM, Taskila  TK, Tamminga  SJ, Feuerstein  M, FringsDresen  MHW, Verbeek  JH. Interventions to enhance returntowork for cancer patients. Cochrane Database of Systematic Reviews 2015, Issue 9. Art. No.: CD007569. DOI: 10.1002/14651858.CD007569.pub3

Gordon, L.G., Lynch, B.M., Beesley, V.L. et al. The Working After Cancer Study (WACS): a population-based study of middle-aged workers diagnosed with colorectal cancer and their return to work experiences. BMC Public Health 11, 604 (2011)

Short P, Vasey JJ, Tuncelli K. Employment pathways in a large cohort of adult cancer survivors. Cancer 2005;103(6):1292301.

2.4 Spiritual and existential challenges

When experiencing a life-threatening illness like cancer, it is common for people to question why they got cancer or wonder about the meaning of their lives. Religious or spiritual values are important to many cancer survivors, and even survivors who are not religious may experience spiritual challenges following a cancer diagnosis. Some patients rely on their religious faith to help them cope with the experience of cancer and treatment (“spiritual coping”) and it is important for healthcare professionals to recognize, respect and support the spiritual needs of these patients. An example of a spiritual screening tool is a two-question model developed by Fitchett and Risk (2009) where a patient is asked if spirituality or religion is important to them and if so, whether their spiritual resources are working for them. Depending on the cultural and religious background of the patient, support may include referral to a chaplain, rabbi or counselor or even making space for rituals, prayer or meditation during consultations. Research has shown that spirituality (e.g. a sense of peace and meaning) is associated with better patient-reported physical health, lower depression and better quality of life after cancer (Bai 2015; Jim 2015; Salsman 2015). Spiritually based interventions, such as mindfulness-based interventions, have been shown to improve mental health outcomes in cancer survivors (Hulett 2016).

References

Jim, H. S., Pustejovsky, J. E., Park, C. L., Danhauer, S. C., Sherman, A. C., Fitchett, G., Merluzzi, T. V., Munoz, A. R., George, L., Snyder, M. A., & Salsman, J. M. (2015). Religion, spirituality, and physical health in cancer patients: A meta-analysis. Cancer, 121(21), 3760–3768. https://doi.org/10.1002/cncr.29353

Salsman JM, Pustejovsky JE, Jim HS, Munoz AR, Merluzzi TV, George L, Park CL, Danhauer SC, Sherman AC, Snyder MA, Fitchett G. A meta-analytic approach to examining the correlation between religion/spirituality and mental health in cancer. Cancer. 2015 Nov 1;121(21):3769-78. doi: 10.1002/cncr.29350.

Bai M, Lazenby M. A systematic review of associations between spiritual well-being and quality of life at the scale and factor levels in studies among patients with cancer. J Palliat Med. 2015 Mar;18(3):286-98. doi: 10.1089/jpm.2014.0189.

Hulett JM, Armer JM. A Systematic Review of Spiritually Based Interventions and Psychoneuroimmunological Outcomes in Breast Cancer Survivorship. Integr Cancer Ther. 2016 Dec;15(4):405-423. doi: 10.1177/1534735416636222. 

Fitchett G, Risk JL. Screening for Spiritual Struggle. Journal of Pastoral Care & Counseling. 2009;63(1-2):1-12. doi:10.1177/154230500906300104 

Reading resources:

Spirituality in Cancer Care (PDQ®)– Patient Version

https://www.cancer.gov/about-cancer/coping/day-to-day/faith-and-spirituality/spirituality-pdq

Spirituality in Cancer Care (PDQ®) - Health Professional Version

https://www.cancer.gov/about-cancer/coping/day-to-day/faith-and-spirituality/spirituality-hp-pdq#cit/section_1.3

2.5 Fear of cancer recurrence

Fear of cancer recurrence or progression (FCR) is a prominent survivorship issue, and help for FCR is one of the highest unmet needs reported by survivors (Ellegaard et al., 2017). FCR is the “fear, worry or concern relating to the possibility that cancer will come back or progress ” (Lebel et al., 2016).By definition, it is important to acknowledge that FCR can affect all patients who have been diagnosed with cancer, regardless of their prognosis. People with severe FCR report constant and intrusive thoughts about cancer, a conviction that cancer will return regardless of actual prognosis and an inability to plan for the future (in case cancer recurrence intervenes).

FCR has been shown to reduce over time, but in those with severe FCR, it can be chronic and unremitting (Dunn et al., 2015). Theoretical models and empirical data suggest FCR may be exacerbated by prolonged treatment and side-effects, high subjective risk of recurrence, perceived inadequate receipt of information about prognosis and signs of recurrence, and beliefs that worry is valuable or dangerous (meta-cognitions). 

Measures of cancer survivors fear of cancer recurrence include: 1) Fear of Cancer Recurrence Inventory; 2) the Short Form of the Fear of Cancer Recurrence Inventory; 3)The Cancer Worry Scale;  

For interventions addressing FCR, a meta-analysis by Tauber and colleagues (2019)synthesized the results of the intervention literature to date. They identified 23 trials of psychological therapies for FCR, finding moderate evidence to support the use of psychological treatments with a small overall effect (Hedge’s g =0.33), maintained at follow-up. Metacognitive therapy does not challenge the content of unhelpful beliefs or worry. Instead, it focuses on accepting FCR as a normal experience, and not engaging with FCR worries. Learn more about Metacognitive therapy for cancer survivors HERE.

There is also emerging evidence that interventions delivered by oncology staff can be effective for mild to moderate FCR (Liu et al., 2019). Oncology staff can help survivors cope better with FCR by screening for and normalising FCR; providing tailored information about prognosis, signs and symptoms of recurrence, behavioural strategies for risk reduction and follow-up schedules; and providing referral to psycho-oncology staff for severe cases, is helpful.

Other resources supporting cancer survivors with FCR include:

Memorial Sloan Kettering Cancer Center: https://www.mskcc.org/blog/six-tips-managing-fear-recurrence;

Robert H. Lurie Comprehensive Cancer at Northwestern University:

https://cancer.northwestern.edu/cancerconnections/presentations/McGinty_ShoetoDrop_Mar2015.pdf  (powerpoint slides with information and coping strategies).

Cancer.Net: Coping with Fear of Recurrence

Cancer Care: Coping with the Fear of Recurrence

Cancer Network: Fear of Cancer Recurrence: A Practical Guide for Clinicians

City of Hope: Controlling Fear of Cancer Recurrence

Additional Readings:

Lebel S, Ozakinci G, Humphris G, Mutsaers B, Thewes B, Prins J, Dinkel A, Butow P. From normal response to clinical problem: definition and clinical features of fear of cancer recurrence. Supportive Care in Cancer. 2016 Aug;24(8):3265-8.

Simard, S., Savard, J., & Ivers, H. (2010). Fear of cancer recurrence: specific profiles and nature of intrusive thoughts. Journal of Cancer Survivorship, 4(4), 361-371.

Crist JV, Grunfeld EA. Factors reported to influence fear of recurrence in cancer patients: a systematic review. PsychoOncology. 2013 May;22(5):978-86. 

Thewes B, Butow P, Zachariae R, Christensen S, Simard S, Gotay C. Fear of cancer recurrence: a systematic literature review of selfreport measures. PsychoOncology. 2012 Jun;21(6):571-87.

SECTION 3: SURVIVORSHIP CARE TOOLS AND RESOURCES

3.1 Common tools for patients’ self-management

The Supportive Oncology Collaborative: https://www.supportiveoncologycollaborative.org/patient-handouts/ 

[Open Access] Howell, D., Richardson, A., May, C., Calman, L., Fazelzad, R., Moradian, S., & Foster, C. (2019). Implementation of self-management support in cancer care and normalization into routine practice: a systematic scoping literature review protocol. Systematic Reviews, 8(1), 1-10. 

3.2 Additional resources

For clinicians:

ASCO: https://www.asco.org/practice-policy/cancer-care-initiatives/prevention-survivorship/survivorship-compendium-0

ESMO: https://www.esmo.org/guidelines 

For patients:

ESMO: https://www.esmo.org/content/download/117593/2061518/file/esmo-patient-guide-survivorship.pdf


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