Psychosocial Impacts of Radiation Tattooing For Breast Cancer Patients
A Critical Review barbara clow and janet allen
Cette revue de la littérature rapporte ce que les patientes du tattooing typically involves anywhere from four to twelve cancer du sein ont écrit sur leur connaissance et leur attitude dots—depending on the institution—at points ranging face au tatouage permanent qui définit la surface du corps from the collarbone to the fold under the breast and from à irradier. La communauté médicale accepte généralement the breastbone to underneath the underarm (Karmarnicky, l’usage des marques permanentes, avançant l’hypothèse que les Rosenberg, and Betancourt). While health care provid- tatouages favorisent un traitement radiologique plus précis et ers stress the need for tattoos to ensure accuracy and as a procurent un dossier permanent de l’exposition aux radiations. permanent record of radiation exposure, a growing body Mais il existe de plus en plus de témoignages des femmes qui of research and anecdotal evidence points to an interest s’offusquent des marques permanentes sur leur corps, depuis le in alternatives to and removal of permanent medical tat- rejet catégorique jusqu’à l’indifférence ou encore l’acceptation toos used in radiotherapy (Foreman; Probst et al.). This d’emblée des tatouages en dépit des séquelles éventuelles pour interest seems particularly high among breast cancer pa- leur bien-être psychologique. tients, which supports the conclusion that some women experience distress in response to this treatment practice The emotional and psychological trauma and distress (Alam and Arndt; Billingsley; David, Castle and Mossi; of breast cancer diagnosis, treatment, and recovery are Foreman). well-documented. The existing literature attributes this This discussion is based on an analysis of traditional distress to fears about death, recurrence and overall health peer-reviewed literature and grey literature, defined (Ashing-Giwa et al.), the impact of treatment and recov- as information produced by government, academics, ery on relationships, children or work (Ashing-Giwa et business, industry and the public in both electronic al.; Buick et al.), and concerns about physical changes and print formats but which is not controlled by com- to the breasts resulting from mastectomy, lumpectomy, mercial publishing (Schoepel and Darace). Web-based and other treatments (Deshields et al.). Other studies information, particularly patient/survivor fora and explore possible associations between breast cancer diag- blogs, represents an important source of evidence for nosis and treatment and mental health issues, including this analysis. Our review of literature reveals that women post-traumatic stress symptoms (ptss) (Andersen et al.; have diverse responses to medical tatooing for radiation Andrykowski and Cordova) and depression (Mosher and treatment, positive and negative, which may affect their Danoff-Burg; Roussi et al.). What is unclear from this experiences of cancer and care. Yet limited attention is research, however, is how the use of permanent tattoos afforded this aspect of cancer treatment, particularly in in radiotherapy for breast cancer affects women’s psy- the peer-reviewed literature. chosocial understandings and experiences of the disease. At the same time, a small body of research suggests that Even research that focuses on patients’ experiences of women’s experiences of medical tattooing may be affected radiotherapy does not directly address the psychological by social location—race, culture, socio-economic status, impact of permanent radiation tattooing (Buick et al.; geography, etc. Discussion of the social determinants Deshields et al.; Siekkinen et al.). of health is also generally absent in the peer-reviewed The current standard of practice for defining the area literature. This dearth of systematic research on cancer to be irradiated for breast cancer treatment is by marking tattooing is disturbing in light of the varied perceptions the skin with small, permanent blue ink dots or “tattoos” and experiences of women living with a diagnosis of (Griffiths et al.; Winer et al.). For breast cancer patients, breast cancer.
46 CANADIAN WOMAN STUDIES/LES CAHIERS DE LA FEMME Theoretical Framework type could sell the war, then it might also promote other products and services” (Jones 17). With this commodi- Women’s voices are all but absent in the literature that ad- fication process firmly entrenched in mainstream media dresses radiation tattooing used in breast cancer treatment. and entertainment, women come to see their breasts as Because a feminist framework positions lived experience as objects for others rather than an aspect of their embodied a valid source of knowledge (Reinharz and Davidman), it is selves (Jones; Millsted and Frith; Young). Currently, there an important lens through which to view the psychosocial is only one “perfect” breast shape—one that is “round, aspects of radiation treatment for breast cancer. Patients’ positioned high on the chest, large and firm” (Jones 18). concerns are evident, not so much in formal research, but While these cultural influences exert pressure on women through anecdotal evidence. For example, online personal to conform to this ideal, it does not mean that women weblog or “blog” entries and discussion groups that address are merely passive vessels for culturally prescribed norms
Permanent radiation tattoos pose a significant psychosocial challenge for some women living with breast cancer. Many of those reporting distress see the tattoos as compounding the trials of dealing with significant physical changes to their breasts and bodies arising from diagnosis and treatment. the issue provide a snapshot of attitudes about permanent regarding the “perfect” breast: “women actively negotiate radiation tattoos. Inclusion of these informal sources of their position in relation to a complex web of discourses, information is not intended to replace evidence obtained gazes, audiences, identities and visibilities” (Millsted and through systematic, peer-reviewed research, but simply to Frith 463). provide a preliminary starting point for discussions about how radiation tattooing is currently being defined—or not Psychosocial Impact defined—as a challenge for breast cancer patients. Clearly, further research is needed to explore the themes raised in The role of permanent radiation tattooing in breast cancer this review of the literature from a feminist perspective treatment is neglected in the literature, in part because that accounts for women’s experiential knowing. the marks are sometimes seen—by both patients and It is understandable that both aesthetics and emotional practitioners—as a relatively minor issue in the context significance factor into women’s medical decision-making of managing a disease that is potentially life threatening about their breasts considering the complex, and often (Alam and Arndt; Harris). In support of this view, some contradictory, meanings of women’s breasts in modern women living with permanent radiation marks have re- Western culture. Rachel Millsted and Hannah Frith state ported ready acceptance of the tattoos while others view that “women’s breasts are invested with social, cultural them as a minor nuisance or inconvenience (Foreman). and political meanings which shape the ways in which However, there is also evidence to suggest that permanent we make sense of and experience our embodied selves” radiation tattoos pose a significant psychosocial challenge (455). They are simultaneously sites of maternal nurtur- for some women living with breast cancer. For instance, ing, femininity, and sexual desirability (Jones; Millsted many of those reporting distress see the tattoos as com- and Frith; Young). Early representations of the female pounding the trials of dealing with significant physical breast in art and mythology valued voluptuous, prominent changes to their breasts and bodies arising from diagnosis breasts as symbols of abundance, fertility, and nurturance and treatment (Langellier). Clearly, women experience a (Jones). Standards of beauty shifted in the middle-ages wide range of reactions to radiation tattooing for breast in Europe to a preference for small, round, firm, and cancer and the depth of their reactions as well as the widely-spaced breasts and their role in male sexual pleasure reasons for them vary. and desire overshadowed any maternal meaning (Jones). Breast cancer patients may also object to tattoos for With colonization came nude images of African women cultural and/or religious reasons. One example of this in photographs and art in nineteenth century Europe and potential conflict involves women who observe Orthodox these images clearly depicted African women’s bodies and Judaism because tattooing is explicitly forbidden by the breasts as sagging and used-up—in stark visual contrast to Torah. A website dedicated to Jewish women’s health the perky, eroticized, white aesthetic ideal (Jones). advises readers that temporary markings should be used if The commercial potential of women’s breasts was first at all possible and if not, that the tattooing should be per- realized during World War ii when “filmmakers and formed by a non-Jew (Jewish Women’s Health). Similarly, advertisers realized that if the prominent-breasted female Langellier documents a case in which a devout Catholic
VOLUME 28, NUMBERS 2,3 47 breast cancer patient—who understood tattooing to be experiences and consequent shifts in personal identity inconsistent with her faith—expressed fears associated through non-medical tattooing. A growing number of with tattooing. “So a religious thing,” she said, “would be breast cancer survivors are actively transforming their that I had to get over the fact of I had four little dots of medical tattoos and scars into works of art by incor- tattoo and when I grew up the thing is that people who porating them into permanent decorative designs that had marked their bodies were children of the devil and have personal significance. Women are redefining their that you were to go to Hell” (Langellier 153). Anecdotal experiences of breast cancer by becoming walking works evidence suggests that the religious or cultural significance of art and redefining the meaning of “disease” and “ill- of tattooing may not be validated by medical professionals. ness” in the process (Radley and Bell). Radley and Bell For example, an online blog entry describes a woman’s maintain that the creation of visual images depicting experience in which she raised a religious objection to the breast cancer increases the visibility of the disease thereby use of permanent tattoos but was told by the doctors and challenging the “cultural cloak that has lain over both technicians that she had to have them (Eva). As mentioned cancer generally and breast cancer in particular” (368). earlier, medical tattoos are regarded as the gold standard Such forms of artistic expression can also represent a for marking the field of radiation treatment, but there is type of personal narrative—a way for survivors to share evidence that alternatives to tatoos, semi-permanent or a “story of the body through the body” (Langellier 146). temporary marks using henna and other products, have For many women, cancer has meant a loss of control been offered by medical professionals when religious (Thomas-MacLean) and the act of redefining the marks objections are raised (Gitlin). Further research is needed and/or scars associated with cancer treatment constitutes that considers the role of faith and culture in patients’ an act of re-embodiment and empowerment. meaning-making and decision-making processes about Once the body is permanently marked for treatment, this treatment practice and the potential inconsistencies some women choose re-marking on their own terms as in provision of care. a form of resistance and an act of reclaiming their bod- While much of the evidence found from a search of ies (Langellier). This act of resistance is consistent with online support forums suggests that women’s experiences feminist critiques of how the medical establishment views with permanent radiation tattooing are largely negative, patient autonomy, which is currently defined largely in it is possible that these views do not reflect the majority terms of rational choice and informed consent (Dodds). of women, given that those who are most dissatisfied According to feminist theories of bioethics, this under- with their experiences are more likely to voice their standing of autonomy is limited as it fails to account concerns. Certainly other evidence suggests a signifi- for the social circumstances and power relations that cantly different interpretation of tattooing. For some shape the context in which the choice is made (Dodds). breast cancer patients, the blue dots themselves come to Autonomy is also conceived of as an all-or-nothing represent bonding and sisterhood—they are perceived as proposition—either one is deemed competent to give badges of honour for having survived the disease. One informed consent or not. According to Dodds, “this lack example of defining the permanent tattoos in this way of middle ground, of an awareness that the capacity to is Schwan’s book, The Blue Tattoo Club: A Breast Cancer make health care decisions may admit by degrees, is one Sisterhood. The book—and associated online support effect of the identification of autonomy with informed forum—consists of personal stories from breast cancer consent, which can be particularly harmful to women’s survivors about diagnosis, treatment, and recovery. The interests” (217). She notes that a patriarchal system, the blue tattoos indicate membership in this club, member- kinds of medical decisions women are required to make, ship that women do not choose but which nevertheless and the cultural perception of women as irrational and connects them in their healing struggles and victories. overly emotional all contribute to the construction of Sheryl Crow, a prominent music artist and member of health care options that limit women’s autonomy (Dodds). the blue tattoo club has been quoted as saying, “I’ve kept While informed consent and the capacity to choose are my tattoo because it is a reminder for me. It’s a reminder of course important, Dodds argues that “respect for au- of that time. It’s a reminder of how I want to look at my tonomy is not restricted to respect for choices of a certain life. I want to remember” (Entenmann). kind but also requires the development of autonomous Similarly, some women seem to embrace tattooing after selves” (226-7). treatment as an opportunity for self-expression. While A review of online support forums and personal blog much of the support for breast cancer survivors focuses narratives also suggests that many breast cancer patients on aesthetic aspects of healing such as breast recon- feel they have little or no choice about permanent tattoos. struction, nipple and areolar tattooing, and prosthetics BrandonMom stated: (See El-Ali, Dalal and Kat; Hang-Fu and Snyderman; Henseler et al.; Spear and Arias), some survivors are Whether you are someone that enjoys seeing your eschewing efforts to match their pre-treatment appear- battle scars, or someone that prefer [sic] to minimize ance in favour of expressing the nuances of their cancer the permanent marks, the choice should be yours
48 CANADIAN WOMAN STUDIES/LES CAHIERS DE LA FEMME and you should be informed of the pros/cons of a previous study on cancer support services in Atlantic each method [temporary or permanent marks]. Not Canada showed that women made treatment choices based just told “you will get tattoos.” From most women I on social rather than medical imperatives. Faced with the have spoken to, they are not aware there is another choice of a mastectomy or extended absences from home choice. That seems wrong to me. The choice should to have radiation treament following a lumpectomy, many be the patient’s to make, as the patient has to live women opted for the more invasive surgery because it with the decision. allowed them to remain with their families and friends (Clow et al.). We not only need more research on women’s This perceived lack of autonomy is highly prob- choices in relation to breast cancer tattooing, but also lematic given the wealth of research that confirms the research that addresses the impact of social location on psychological benefit of women’s active involvement in women’s choices.
Some women choose re-marking on their own terms as a form of resistance and an act of reclaiming their bodies. This act of resistance is consistent with feminist critiques of how the medical establishment views patient autonomy, defined largely in terms of rational choice and informed consent.
treatment (Deadman et al.; Fallowfield et al.; Pozo et Medical Standards al.; Till, Sutherland, and Meslin). While some sources identify the patient’s right to choose between temporary The medical justifications for using any kind of tattoos or permanent tattoos (Probst et al.; “Use of Tattoos”), to define the radiation field are precision and consistency often this information is presented to emphasize the (David, Castle, and Mossi; Harris; “Use of Tattoos”; inferiority of temporary marks. Opportunities for choice Uyeda). Typically, radiation treatment is administered in regarding treatment are particularly significant for women a series of daily consecutive doses over a period of several marginalized by socioeconomic status. For example, weeks and it is crucial that these doses are applied to the Clark notes that working class women with breast cancer exact same area each time (David, Castle, and Mossi). are less likely to advocate for themselves or challenge Another frequent argument for permanent tattoos, as physicians’ recommendations than middle-class women opposed to temporary markings, is based on the need who have greater access to resources and information. for long-term consistency: should additional radiation As permanent marks are considered standard practice, be required—due to cancer recurrence or the develop- little is known about women’s preferences, resistance, or ment of a new cancer—it is critical to know the exact autonomy in this regard. site of treatment because the tissue cannot withstand a It is important to note that choice can be a problematic second full-dose course of radiation treatment (Kraus- element for female breast cancer patients. Thomas-Ma- Tiefenbacher et al.). Physicians often discourage patients cLean notes that women may struggle with making breast from having tattoos removed on these grounds, arguing cancer treatment decisions and be uncomfortable as well that the marks aid in follow-up examinations and serve as unfamiliar with the autonomy afforded them in this to identify the irradiated area should the cancer re-occur regard. She identifies the important dilemma that “given and further radiation is needed (Hampshire; Harris; “Use the uncertainty of many cancer treatments, one must of Tattoos”). According to some researchers, marks in the ask what choices are really being presented” (Thomas- centre of the torso are most important years later should a MacLean 634). A feminist analysis of this phenomenon breast cancer patient require future radiation treatment to suggests that women, in contrast to men, often lack a an adjacent area (Probst et al.) or access additional treat- frame of reference for egalitarian approaches to health ment at a different facility (“Use of Tattoos”). care. Without experience being treated as respected While the medical rationale for permanent tattooing partners in health care, women may be unaccustomed to has been clearly articulated, David, Castle, and Mossi assuming a proactive stance on their own behalf (Thomas- have identified three main concerns about the practice MacLean). Of course this analysis is not meant to imply and its medical justification: mobility, visibility, and that women are incapable of exercising autonomy, but emotional impact on the patient. First, mobility refers to rather that gender—the behaviours, roles, attitudes and the tendency of marks to shift over time. In other words, expectations attributed to women and men by society on permanent tattoos do not necessarily provide an accurate a differential basis—will affect how women understand record of radiation treatment because their location can and exercise “choice” (Clow et al. 2009). For example, change over time, particularly for overweight and elderly
VOLUME 28, NUMBERS 2,3 49 patients, due to stretching or shrinking of the skin and not critical and it has since been eliminated. Because changes in elasticity (David, Castle, and Mossi; Probst temporary marks are time consuming—they take longer et al.). Second, visibility concerns include locating and to apply and need to be refreshed—it may be impracti- identifying the dots on darker-skinned patients and dis- cal for treatment facilities with high patient volume to tinguishing the radiation marks from hair follicles. While consider options other than permanent marks. But more educational materials often emphasize the smallness of research is needed to understand why some health systems radiation tattoos, the size itself can create challenges for or centres regard permanent markings as the standard of accurately locating the marks from one treatment to the care while others do not, particularly in light of patient next. Moreover, it is sometimes necessary to use temporary reactions to tattoos. markings because the permanent ones are not universally effective for all breast cancer patients. For instance, stan- Conclusion dard blue-ink tattoos may not show up well on patients with darker skin tones (David, Castle, and Mossi), which This review highlights gaps in the literature about the use suggests the ineffectiveness of using permanent tattoos of permanent tattoos to specify the radiation treatment for treating African Canadian women and other women area for breast cancer patients and the meanings this of colour with breast cancer. Third, emotional impact treatment practice may have for the women affected. We refers to the fact that “permanent tattoos remind cancer are also ill-informed as to the possible significance the survivors daily of their disease and treatment” (David, tattoos may have in the ways women construct meaning Castle, and Mossi 1), experiences that many patients may and establish community around their experience of breast prefer to forget. cancer treatment and recovery. Meaning-making and sup- Growing recognition of the potential psychological port-building are part of the multi-layered emotional and meanings attached to permanent marks has led some psychosocial processes of managing disease experiences, researchers to explore techniques for temporarily out- including the various aspects of cancer diagnosis and lining the radiation area. For instance, David, Castle, treatment. Furthermore, formal research on breast cancer and Mossi proposed the use of invisible fluorescent ink patients’ autonomy in medical decision-making respecting that is black light reactive, however, their study was not the use of permanent tattoos should be undertaken using conducted on patients and further research is needed feminist and sex- and gender-based lenses. Currently, there to assess the viability of this option. Alternatives such is no comprehensive analysis of the potential psychosocial as semi-permanent or temporary markings made using impacts of using permanent tattoos to specify the radiation markers or surgical pens have been shown to be equally area for breast cancer patients. effective as permanent markings (Probst et al.). Probst et al. conducted randomized trials with early stage breast cancer Barbara Clow is Executive Director of the Atlantic Centre patients comparing the effectiveness of a combination of of Excellence for Women’s Health, Halifax, and Associate semi-permanent and permanent markings with the use Professor Research in the Faculty of Health Professions at of semi-permanent markings alone and found no signifi- Dalhousie University, Halifax. She has a Ph.D. in the history cant difference between the two groups. They concluded of medicine from the University of Toronto and has presented that, for the majority of patients, “the choice not to have and published on various dimensions of the history of health permanent tattoos will not interfere with the accuracy of and healing, including the history of cancer, alternative the treatment application” (Probst et al. 188). medicine and thalidomide. In the past ten years, Dr. Clow A review of breast cancer information and education has pursued a program of research and publication on diverse websites demonstrates that information about permanent aspects of women’s health, including work in the area of can- and semi-permanent or temporary markings is available, cer, obesity, the gendered dimensions of health care reform in but there is little guidance about when or why different Canada, lone mother’s experiences of inclusion and exclusion, types of markings should be used. Despite the generally the social determinants of African Canadian women’s health, agreed upon standards of radiation tattooing for breast the role of gender in the hiv/aids pandemic, and the impact cancer patients, practices differ from country to coun- of women’s unpaid caregiving work. try and even between jurisdictions and institutions. It is also interesting to note that standards are changing, Janet Allen is a registered social worker and sessional instrutctor although it is often not clear how or why these changes at dalhousie university’s school of social work. Prior to here to policy and practice are being made. For instance, the work as asocial work educator, Ms. Allen worked as a researcher Nova Scotia Cancer Centre (nscc) in Halifax specifies in the field of women’s health and as a clinical social worker using four to six permanent markings “about the size with women survivors of sexual health trauma . of the tip of a pen” located on the chest or breast area. Recently, nscc reviewed its marking practices for breast References cancer radiation treatment and determined that the mark on the upper breast bone—the most visible mark—was Alam, Murad and Kenneth A. Arndt. Letter. Annals of
50 CANADIAN WOMAN STUDIES/LES CAHIERS DE LA FEMME Internal Medicine 136.7 (2 April 2002): 558. Web. 18 Relational Autonomy: Feminist Perspectives on Autonomy, September 2009. Agency and the Social Self. Eds. Catriona MacKenzie Andersen, M. Robyn, et al. “Frequent Search for Sense and Natalie Stoljar. New York: Oxford University Press, by Long-term Breast Cancer Survivors Associated with 2000. 213-35. Print. Reduced hrqol.” Women & Health 47.4 (2008): 19-37. El-Ali, K., M. Dalal, and C. C. Kat. “Tattooing of the Web. 30 Oct. 2008. Nipple-areola Complex: Review of Outcome in 40 Andrykowski, Michael A. and Mathew J. Cordova. “Factors Patients.” Journal of Plastic, Reconstructive & Aesthetic Associated with ptsd Symptoms Following Treatment Surgery 59 (2006): 1052-7. Web. 31 Oct 2008. for Breast Cancer: Test of the Andersen Model.” Journal Entenmann, Dalene. “Sheryl Crow in the Blue Tattoo of Traumatic Stress 11.2 (1998): 189-203. Web. 30 Sisterhood.” The Cancer Blog. n.p., 1 Aug. 2006. Oct. 2008. Web. 10 May 2009.
VOLUME 28, NUMBERS 2,3 51 Professionals. The Jeanie Schottenstein Center for Finnish Cancer Patients during Radiotherapy.” European Advanced Torah Study for Women, n.d. Web. 31 Oct. Journal of Cancer Care 17 (2008): 387-93. Web. 31 2008.
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