Cancer patients and survivors: changing words or changing culture?
Authors: A. Surbone, M.A. Annunziata, A. Santoro, U. Tirelli, P. Tralongo
Journal: Annals of Oncology (2013)

Debate about the definitions of 'cancer survivor' and 'survivorship' has intensified in the past years [1.Astrow A.B. A piece of my mind. Cancer survivorship and beyond.JAMA. 2012; 308: 1639-1640doi:10.1001/jama.2012.13258Crossref PubMed Scopus (10) Google Scholar, 2.Bell K. Ristovski-Slijepcevic S. Cancer survivorship: why labels matter.J Clin Oncol. 2013; 31: 409-411doi:10.1200/JCO.2012.43.5891Crossref PubMed Scopus (77) Google Scholar, 3.Kahn N.F. Rose P.W. Evans J. Defining cancer survivorship: a more transparent approach is needed.J Cancer Surviv. 2012; 6: 33-36doi:10.1007/s11764-011-0194-6Crossref PubMed Scopus (50) Google Scholar, 4.McGrath P. Holewa H. What does the term 'survivor' mean to individuals diagnosed with a haematological malignancy? Findings from Australia.Support Care Cancer. 2012; 12: 3287-3295doi:10.1007/s00520-012-1453-4Crossref Scopus (20) Google Scholar]. According to the National Coalition for Cancer Survivorship (NCCS) in the USA, an individual diagnosed with cancer is 'a survivor from the time of its discovery and for the balance of life', and goes through different 'seasons of survival' in a continuum [5.National Coalition for Cancer SurvivorshipNCCS http://www.canceradvocacy.org/about-us/ 31 January 2013, date last accessed)Google Scholar, 6.Mullan E. Season of survival: reflections of a physician with cancer.N Engl J Med. 1985; 313: 270-273doi:10.1056/NEJM198507253130421Crossref PubMed Scopus (509) Google Scholar, 7.Leigh S. Hoffman B. Defining our destiny.A Cancer Survivor's Almanac: Charting Your Journey. John Wiley and Sons, Hoboken, NJ2004Google Scholar]. Not all cancer patients experience equal existential suffering and some live cancer as a growing, rather than a traumatic disruptive experience [8.Rich K.A. The Red Devil. To Hell with Cancer and Back. Crown Publisher,, New York1999Google Scholar, 9.Blinderman C.D. Cherny N.I. Existential issues do not necessarily result in existential suffering: lessons from cancer patients in Israel.Palliat Med. 2005; 19: 371-380doi:10.1191/0269216305pm1038oaCrossref PubMed Scopus (87) Google Scholar, 10.Park C.L. Helgeson V.S. Growth following highly stressful life events: current states and future directions.J Counsult Clin Psychol. 2006; 74: 791-796doi:10.1037/0022-006X.74.5.791Crossref PubMed Scopus (211) Google Scholar, 11.Sinding C. Wiernikowski J. Disruption foreclosed: older women's cancer narratives.Health (London). 2008; 12: 389-411doi:10.1177/1363459308090055Crossref PubMed Scopus (62) Google Scholar]. Yet, a vast majority of people diagnosed with cancer experience many changes in their lives, at times drastic and long lasting. For this reason, Dr Mullan [6.Mullan E. Season of survival: reflections of a physician with cancer.N Engl J Med. 1985; 313: 270-273doi:10.1056/NEJM198507253130421Crossref PubMed Scopus (509) Google Scholar] first characterized himself and all his fellow cancer patients as resilient 'survivors' from the day of diagnosis no matter how long they live. In most other European and non-European countries, however, cancer survivors are defined as patients who have lived beyond 3–5 years from diagnosis, or end of treatment, with no evidence of disease. Indeed, in those contexts where the term 'survivor' does not carry positive connotations related to 'resilience', people living after a cancer diagnosis perceive it to be a negative or pessimistic label that ties them to a traumatic life event. Actually, they regard the experience of cancer as contributing to their life history and identity, without defining or classifying them. Italian patient advocacy organizations assert that Italian patients do not like to be called survivors and they rather have the right to be called cured. Many Italian oncologists also stress the benefits of declaring their patients 'cured' or 'cancer-free' [12.IV European conference on survivors and chronic cancer patients, Siracusa, Italy, June 8th 2012. Available at www:oncologicicronici.it (31 January 2013, date last accessed)Google Scholar]. In a qualitative study in the UK, 40 persons at least 5 years after the diagnosis of breast, colorectal or prostate cancer were asked if they considered themselves to be cancer survivors [13.Khan N.F. Harrison S.E. Rose P. et al.Interpretation and acceptance of the term 'cancer survivor': a UK based qualitative study.Eur J Cancer Care. 2012; 21: 177-186doi:10.1111/j.1365-2354.2011.01277.xCrossref PubMed Scopus (51) Google Scholar]. The majority did not endorse the term: to them, 'survivor' implied a high risk of death, made them feel bound to an identity that did not describe them accurately, and either suggested that a good outcome was dependent on personal characteristics or called for an advocacy role they did not wish to assume. Those who accepted it understood 'survivorship' as a factual definition of having had cancer and survived, or interpreted 'survivor' as implying self-empowerment or cure, despite the possibility of recurrence [13.Khan N.F. Harrison S.E. Rose P. et al.Interpretation and acceptance of the term 'cancer survivor': a UK based qualitative study.Eur J Cancer Care. 2012; 21: 177-186doi:10.1111/j.1365-2354.2011.01277.xCrossref PubMed Scopus (51) Google Scholar]. Some patients perceive the term as excessively heroic, as overemphasizing positive over negative feelings about cancer of equal authenticity, as not representative of those who continue to struggle with cancer, or as disrespectful to those who die to cancer [14.Twombly R. What's in a name: who is a cancer survivor.J Natl Cancer Inst. 2004; 96: 1414-1415doi:10.1093/jnci/96.19.1414Crossref PubMed Scopus (84) Google Scholar]. 'Living with and beyond cancer' may best describe persons who live long with cancer in a chronic form [15.Hozman S. The other cancer story: is this a breast cancer competition?.Am J Nurs. 2005; 105: 39doi:10.1097/00000446-200511000-00024Crossref PubMed Scopus (8) Google Scholar, 16.Kaiser K. The meaning of the survivor identity for women with breast cancer.Soc Sci Med. 2008; 67: 79-87doi:10.1016/j.socscimed.2008.03.036Crossref PubMed Scopus (144) Google Scholar]. A US medical oncologist, based on his personal experience, suggested 'thrivorship' for those who were cancer patients as a way to 'open oneself to fellowship with all in the grip of life's fragility' [1.Astrow A.B. A piece of my mind. Cancer survivorship and beyond.JAMA. 2012; 308: 1639-1640doi:10.1001/jama.2012.13258Crossref PubMed Scopus (10) Google Scholar]. The NCCS definition of survivorship, now extended to 'anyone touched by cancer' to reflect the profound long-lasting repercussions of cancer on patients and their families, has been useful at social and policy-making levels to promote attention to the needs of cancer patients and to request increased funding for research and standard care [5.National Coalition for Cancer SurvivorshipNCCS http://www.canceradvocacy.org/about-us/ 31 January 2013, date last accessed)Google Scholar, 17.Davies N. Cancer survivorship: living with or beyond cancer.Cancer Nurs Pract. 2009; 8: 29-35Crossref Google Scholar]. A recent analysis of the origin, meaning and nuances of the words 'survivor' and 'survivorship' concluded, however, that the definition of 'person who has had cancer' may be preferable, as it refers to all cancer patients and implicitly acknowledges their heterogeneity [2.Bell K. Ristovski-Slijepcevic S. Cancer survivorship: why labels matter.J Clin Oncol. 2013; 31: 409-411doi:10.1200/JCO.2012.43.5891Crossref PubMed Scopus (77) Google Scholar]. The authors, however, stressed that any definition imposes constraints on the heterogeneous reality of cancer and its survivorship, while eliding 'the larger issue' of 'the intrinsic ambiguity in the experience of cancer and the limitations of prevailing acute versus chronic disease models' [2.Bell K. Ristovski-Slijepcevic S. Cancer survivorship: why labels matter.J Clin Oncol. 2013; 31: 409-411doi:10.1200/JCO.2012.43.5891Crossref PubMed Scopus (77) Google Scholar]. We concur that only a major cultural shift, based on a reappraisal of narrow traditional biomedical notion of disease and outcome categories in favor of a holistic understanding of cancer and its outcomes in a chronic illness framework, will make us understand cancer survivorship in all its medical and psychosocial aspects and effectively address our patients' concerns and needs [18.Tralongo P. Annunziata M.A. Santoro A. Tirelli U. Surbone A. Beyond Semantics: The need to better categorize patients with cancer.J Clin Oncol. 2013; (May 20 [Epub ahead of print], doi: 10.1200/JCO.2013.50.0850)Crossref PubMed Scopus (8) Google Scholar, 19.Tritter J.Q. Calnan M. Cancer as a chronic illness? Reconsidering categorization and exploring experience.Eur J Cancer Care. 2002; 11: 161-165doi:10.1046/j.1365-2354.2002.00345.xCrossref PubMed Scopus (83) Google Scholar, 20.Edgar A. The expert patient: Illness as practice.Med Health Care Philos. 2005; 8: 165-171doi:10.1007/s11019-005-2277-5Crossref PubMed Scopus (23) Google Scholar]. Cancer is a highly heterogeneous disease with different types, phases, therapies and outcomes, including forms that can be cured, that may progress rapidly or through alternating periods of remission and relapses, that last for short periods or decades and that often require intermittent or continuous treatment. This heterogeneity has major implications on cancer and survivorship care [21.Simonelli C. Annunziata M.A. Chimienti E. Berretta M. Tirelli U. Cancer survivorship: a challenge for the European oncologists.Ann Oncol. 2008; 7: 1216-1217doi:10.1093/annonc/mdn384Abstract Full Text Full Text PDF Scopus (26) Google Scholar]. In its recent statement on how to achieve high-quality cancer survivors' care, the American Society of Clinical Oncology Cancer Survivorship Committee stressed that ASCO endorses the NCCS definition of survivorship as starting at the point of diagnosis. However, for the purpose of the statement, the Committee chose to use a 'functional definition of survivorship, focusing on individuals who have successfully completed curative treatments or those who have transitioned to maintenance or prophylactic therapy' [22.Bellizzi K.M. Blank T.O. Cancer-related identity and positive affect in survivors of prostate cancer.J Cancer Surviv. 2007; 1: 44-48doi:10.1007/s11764-007-0005-2Crossref PubMed Scopus (49) Google Scholar]. Living long after diagnosis can either mean being disease-free or having active chronic disease. Even the status of 'disease-free' may be attained by some patients only after surgical resection of a small cancer or after long treatments including surgery, radiation, chemotherapy, high-dose chemotherapy, bone marrow transplantation, hormones or new anticancer agents. Surviving lymphoma, breast or lung or colon cancer does not have the same meaning as regards long-term sequelae and quality of life (QoL) [16.Kaiser K. The meaning of the survivor identity for women with breast cancer.Soc Sci Med. 2008; 67: 79-87doi:10.1016/j.socscimed.2008.03.036Crossref PubMed Scopus (144) Google Scholar, 23.MS McCabe S Bhatia KC Oeffinger. American Society of Clinical Oncology Statement: achieving high-quality cancer survivorship care. J Clin Oncol 2013 January 7 [Epub ahead of print], doi: 10.1200/JCO.2012.46.6854Google Scholar]. Not only disease features and stage, but also age, gender, ethnicity and culture, religion, educational and social status, can contribute to the experience of cancer and cancer survivorship. Reflecting on the many faces of survivorship, Gubar [24.Gubar S. Not a Cancer Survivor. New York Times Health Section. 2012; (6th September Available(8 March 2013, date last accessed))http://well.blogs.nytimes.com/2012/09/06/not-a-cancer-survivor/Google Scholar], a writer and patient, stated in The New York Times: 'I'm not a cancer survivor, and neither are the women in my cancer support group'. She concluded: 'Perhaps we need a word for that murky in-between zone that a number of us inhabit daily'. As Frank [25.Frank A.W. The Wounded Storyteller: Body, Illness, and Ethics. The University of Chicago Press, Chicago1995Crossref Google Scholar] suggested in writing about his own heart attack and cancer and in his collective portrait of people living with illnesses and disabilities, this murkiness is in part related to the "postmodern experience of illness" where people can be effectively well and yet never be considered cured, and all their "families share the worries and daily triumph of staying well [25.Frank A.W. The Wounded Storyteller: Body, Illness, and Ethics. The University of Chicago Press, Chicago1995Crossref Google Scholar]." In contrast, some authors propose abandoning the search for a universal definition of survivorship in favor of context-specific operational definitions [26.Feuerstein M. Defining cancer survivorship.J Cancer Surviv. 2007; 1: 5-7doi:10.1007/s11764-006-0002-xCrossref PubMed Scopus (148) Google Scholar]. Others criticize 'survivorship' as an 'immature concept as yet unsupported by any theoretical framework' and support the use of varying definitions based on the individual patient's history [27.Doyle N. Cancer survivorship: evolutionary concept analysis.JOAN. 2008; 62: 499-509Google Scholar]. Finding a cross-culturally acceptable term that can encompass all aspects of cancer and cancer survivorship, including gender, age, past experiences, disease progress, specific risks and follow-up requirements, and unique patient needs, is clearly difficult. Yet, the choice of right or wrong words is not only a matter of semantics: it can either help persons diagnosed with cancer to cope or increase their discomfort. Should we then give up the search for the optimal or universal term or terms? There seems to be no ideal or ideological answer to such question because words matter in our lives, but they are often inadequate to describe our reality and identity and can betray their complexity. This appears to be the case for cancer patients and survivors. Faced with an apparently insurmountable obstacle, we therefore need to go beyond the present debate and focus on a major cultural change in cancer discourse by clarifying to all our patients at diagnosis that they have a condition, characterized by variable rather than fixed chronicity, much like patients with cardiovascular diseases. Cancer patients should be enabled to view themselves as many other patients diagnosed with illnesses with potentially fluid, rather than flat, courses and their challenges, even after treatment completion, as always multifaceted and dynamic [26.Feuerstein M. Defining cancer survivorship.J Cancer Surviv. 2007; 1: 5-7doi:10.1007/s11764-006-0002-xCrossref PubMed Scopus (148) Google Scholar, 28.Aziz N.M. Rowland J.H. Trends and advances in cancer survivorship research: challenge and opportunity.Semin Radiat Oncol. 2003; 13: 248-266doi:10.1016/S1053-4296(03)00024-9Crossref PubMed Scopus (247) Google Scholar]. Yet, a cancer diagnosis reverberates in people's lives in a different, deeper and more pervasive way than a diagnosis of heart or other diseases. The cancer patient's self-image, personal relationships, family dynamics and social roles shift dramatically, even when the prognosis is not ominous. He or she perceives cancer cells as aliens that can potentially disseminate everywhere and worries about any ache or malaise, no matter how minor or unrelated, because it could be cancer. Furthermore, relatives, friends, colleagues and strangers view persons diagnosed with cancer as different, more fragile or even damaged, fellow human beings. Many patients, when cured, desire to live a normal life and not to be reminded of their past. They wish to feel 'cancer-free' [12.IV European conference on survivors and chronic cancer patients, Siracusa, Italy, June 8th 2012. Available at www:oncologicicronici.it (31 January 2013, date last accessed)Google Scholar]. Yet their vulnerability to the long-term risks and concerns associated with cancer and its treatment tend to perpetuate the perception to be different from persons never diagnosed with it. While the menacing echo of a cancer diagnosis and its implications persist, however, an increasing number of patients are being cured and a growing portion of those whose cancer recurs can live for many years with good QoL. We need to explain to each patient the variable and uncertain nature of cancer and then speak of favorable prognosis and cure rates, long-term sequelae and how to reduce them, and survivorship issues to those with early-stage or highly curable cancers. On the other hand, we must speak of relapses or progression, palliative and end-of-life care to those with advanced or recurrent or untreatable diseases [29.Mack J.W. Smith T.J. Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved.J Clin Oncol. 2012; 30: 2715-2717doi:10.1200/JCO.2012.42.4564Crossref PubMed Scopus (207) Google Scholar, 30.Smith T.J. Longo D.L. Talking with patients about dying.N Engl J Med. 2012; 367: 1651-1652doi:10.1056/NEJMe1211160Crossref PubMed Scopus (42) Google Scholar]. Cancer patients should now be enabled to face their future with hope tempered by awareness and realistic expectations. Aware from the time of diagnosis that some cancers can be successfully treated, but also aware that lifetime follow-up and care of potential long-term treatment sequelae will be required to achieve and maintain good QoL, they may be better able to work with their oncologists to design an individual care plan tailored to their medical situation, life priorities and values. A young female patient's desire to have children or the importance of fine-tuned touch for a musician can be incorporated into the shared decision-making process about an early-stage highly curable cancer. The discussion and use of supportive and early palliative care in the treatment course can allow advanced patients to spend their last weeks or days with higher QoL and to be cared for according to their wishes [31.Smith T.J. Temin S. Alesi E.R. et al.American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care.J Clin Oncol. 2012; 30: 880-887doi:10.1200/JCO.2011.38.5161Crossref PubMed Scopus (977) Google Scholar]. Honest, continuous communication is key to caring for cancer patients: being prepared to face life ahead can help patients improve their odds of cure and long-term survivorship, or to cope with a chronic course or death [29.Mack J.W. Smith T.J. Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved.J Clin Oncol. 2012; 30: 2715-2717doi:10.1200/JCO.2012.42.4564Crossref PubMed Scopus (207) Google Scholar, 30.Smith T.J. Longo D.L. Talking with patients about dying.N Engl J Med. 2012; 367: 1651-1652doi:10.1056/NEJMe1211160Crossref PubMed Scopus (42) Google Scholar, 32.Surbone A. Rajer M. Stiefel R. et al.New Challenges in Communication with Cancer Patients. Springer, New York, NY2012Google Scholar]. A radical shift in cancer discourse requires that oncology professionals and institutions start focusing on today's reality of cancer in light of our understanding of its nature and of the current treatments and outcomes, as well as the specific characteristics of each patient's cancer. This would satisfy: (i) the need to align cancer patients' perceptions and expectations to those of patients with other illnesses with variable potential outcomes; (ii) the oncologist's clinical perspective of treating a chronic illness; (iii) the patient's subjective psychosocial experiences at all stages, including when they are cancer-free; (iv) the need for and value of participatory adaptation of each patient to risk-based programs tailored to address his or her specific risks and to promote general health and (v) the varying role and responsibility of medical staff, nursing and caregivers over time. As of now, even the word 'survivor' is not sufficient to rescue patients from the overwhelming perception of cancer as a Damocles' sword. It may, on the other hand, prompt false expectations of cure. Statistical cure coincides with relative survival, the standard measure of excess mortality due to cancer: cure is achieved when the survival of cancer patients is equivalent to that of the general population. This definition of cure, however, applies to population-based cancer survival studies and it cannot be used to tell whether an individual patient will be cured, or if he or she will develop a late recurrence or a second tumor [33.Yu B. A minimum version of log-rank test for testing the existence of cancer care using relative survival data.Biometrical J. 2012; 54: 45-60doi:10.1002/bimj.201100069Crossref PubMed Scopus (3) Google Scholar]. Furthermore, no statistical or clinical definition of cure can describe or predict the patient's QoL when achieving a long cancer-free status. Addressing potential and actual medical and psychosocial risks is indeed the main goal of the new risk-based science and art of survivorship care [34.Earle C.C. Ganz P.A. Cancer survivorship care: don't let the perfect be the enemy of the good.J Clin Oncol. 2012; 30: 3764-3768doi:10.1200/JCO.2012.41.7667Crossref PubMed Scopus (65) Google Scholar]. In oncology, we can therefore never tell a patient 'you are cured' with absolute certainty: those of us who in good faith have pronounced those words have often regretted it. We should rather help our patients live with the medical and existential uncertainty of a cancer diagnosis, by first understanding and accepting ourselves such uncertainty to then be able and comfortable communicating it to them [35.Schapira L. Shared uncertainty.J Support Oncol. 2004; 2 (18): 14PubMed Google Scholar]. The possibility of cure is part of the uncertainty, and oncologists should not be afraid to consider it and discuss it with their suitable patients, along with the potential long-term issues for those patients who achieve a long-lasting cancer-free status. The word 'cancer', however, due to its persisting ominous metaphoric implications, has toxic connotations in all cultures that discourage patients and their families from viewing cancer as a disease with varied outcomes, including cure. Demystifying the word 'cancer' will not be easy. It will require the concerted efforts of physicians, patients, families and media to create a new culture in oncology. Yet, the time has come for such a shift in the medical and public cancer discourse. The authors have declared no conflicts of interest.