Pink Ribbon Blues

How breast cancer culture undermines women's health

Documenting the Invisible Scars of Breast Cancer Treatment

Breaking the silence about sexuality and side effects.

Earlier this month, Ana Porroche-Escudero published an article in Anthropology Today that draws attention to the "invisible scars of breast cancer treatment," those treatment effects that impact many women's lives but are seldom discussed. Two topics that emerged throughout her fieldwork in Spain were the negative effects of treatments on women's sexual pleasure, and the painful side effects of axillary lymph node dissection (the surgical removal of a large number of lymph nodes from the armpit). Ana argues that although these issues came up repeatedly in her fieldwork interviews and focus groups, the "dominant biomedical and mass media tendencies to conceptualize survivorship as a transformative journey....through cancerland" have rendered them invisible, thereby silencing women and limiting their capacity for recovery.

Let's [Not] Talk About Sex

The interviewees openly revealed various post-treatment difficulties with their sexual lives and relationships to Ana the researcher. They shared intimate experiences and made a clear connection between the impact of treatments – radiotherapy, hormone therapy, chemotherapy, or surgery – on their low libido. Unfortunately, some of these same women feared seeking advice from their own health care providers because of taboos surrounding women's sexual pleasure. Others who did speak openly to health professionals faced embarrassment when their concerns about sexuality were met with comments such as, "these are small things" or, "at your age you should not worry about this." Such lack of concern came with a similar lack of useful information. One of her interviewees told her frankly,

"They should inform more. They should explain more: what it is, what it entails… because they say: ‘you have this, we will do this’ but they don’t say ‘these are the consequences.’" (p. 20).

Cancer Vixen
Cancer Vixen
http://onlinelibrary.wiley.com/doi/10.1111/1467-8322.12111/abstract
Although many of these women were angry about the fact that they could not discuss their concerns or get information about how to deal with them, they also had a strong sense of failure and guilt surrounding their sexual lives. A gynaecologist interviewed for the fieldwork had concluded that patriarchal culture assigns women the responsibility to engage in (sexual) relationships. A sudden and extended absence of sexual desire [even when resulting from medical treatment] contributes to women’s inability to fulfill this social role, causing suffering.

When imagery of the sexy cancer survivor prevails in a culture, it is not surprising that women treated for cancer might internalize an expectation that is not practical or realistic. Fatigue, pain, hormone imbalances, chemical side effects can affect sexual appetite as well as functioning. Yet the she-roic, sexualized superwoman in breast cancer culture -- who courageously, passionately, and aggressively battles disease, with style and optimism, is transformed and wins her battle -- functions as a rhetorical device that shapes the discourses available. Individual experiences rarely fit such a mold, but when a particular form of discourse dominates the culture it is sometimes hard to resist.

Let's Not Talk About Lymphedema Either

"After the surgery I felt very physically flattened. I only had my mind and my eyes. It reminded me of the cockroach of Kafka’s The Metamorphosis. When you cannot move … a sensation like … like if I was useless. When you cannot do absolutely anything. It seemed impossible I could ever recover."

When I read the above quotation from Ana Porroche-Escudero's article in Anthropology Today I too felt flattened, emotionally. The collateral damage of medical treatments, even potentially life-saving ones, can have profound effects on people's lives. Until recently, for example, many breast cancer surgeries involved the removal of lymph nodes, which can have major long-term side effects, including lymphedema (accumulation of fluid near the surgical site, increasing inflammation, propensity for infection, and decreased immune response), pain, and impaired mobility that can, "impede women from simple daily activities such as combing hair, holding the hand of ‘my four-year-old grandson during a walk’, carrying a shopping bag, ‘driving’, lifting heavy things, cleaning windows, mopping the floor, or ‘enjoying certain sexual postures and caresses.'" (p. 20). Similar to the cockroach analogy, her interviewees described their post-treatment experience as unbearable or relentless.

Scarring from surgery or radiation can also cause lymphedema, but it is especially associated with surgery and the removal of lymph nodes. The first and most common breast cancer procedure to remove a large number of lymph nodes in the armpit was axillary lymph node dissection (ALND). A new and less extensive technique called sentinel lymph node biopsy (SLNB) emerged in the 1990s. In this procedure (associated with fewer long-term side effects than ALND) only the lymph nodes to which the cancer is most likely to spread (sentinel nodes) are removed. If no cancer cells are found in the sentinel nodes no other lymph nodes are removed. But if the sentinel nodes closest to the tumor do show cancer cells, then ALND was still performed under the theory that doing so would keep the cancer from spreading or coming back, thereby prolonging lives. ALND was the protocol until 2011 when a randomized controlled trial confirmed that removing those lymph nodes had no effect on survival.

Porroche-Escudero points out that today countries like the UK and Spain encourage surgeons to use SLNB rather than ALND. Yet ALND remains the only option in particular types of carcinoma. The recommendation is similar in the U.S. But the true incidence of lymphedema is unknown. The criteria used to identify the condition and measure it are variable. However, those treated for breast cancer have a life-long risk of developing lymphedema.

This study reveals how that which is "invisible" is easily forgettable--not necessarily by those who experience it but by everyone else. The interviewees commented that once their treatment ended and the most visible side-effects started to vanish (such as when hair grows back or tests come back clear) family members and others may take for granted that everything is fine. One of the interviewees told her doctor that he was lying to her because he told her she was okay when in fact she still felt very sick. She said, "I don’t feel cured because I am tired, because I have too much pain in my arm." Yet her doctor told her, "Those are side-effects but in truth you are cured from the disease you had." The woman was furious that her doctor spoke of her disease in the past tense. There may have been no evidence of the disease for which she had been treated, but the effects of that treatment put her into a different state of illness -- one that failed to be acknowledged or addressed.

Human beings are complete systems. Treating them as a constellation of parts not only "unprepares" them for what to expect from medical interventions, as Porroche-Escudero suggests, it undermines the functioning of the entire system. By documenting the invisible scars of breast cancer treatment, studies like this one have the potential to help diagnosed women get the help they need to manage the impact of cancer on their bodies as well as their lives.

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Citation: Porroche-Escudero, A. (2014), The ‘invisible scars’ of breast cancer treatments. Anthropology Today, 30: 18–21. If you are not able to access the full article, you may email the author at anaporroche2000@yahoo.es.

Ana Porroche-Escudero is an anthropologist, researcher, and educator whose PhD was internationally recognized with the Barbara Rosenblum Award for her commitment to cancer advocacy. She also sits on the Breast Cancer Consortium Advisory Board, so I support her work and am honored to know Ana personally.

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Dr. Gayle Sulik is the author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health. More information is available on the book's website.

© 2014 Gayle Sulik, PhD ♦ Pink Ribbon Blues on Psychology Today

 

Gayle A. Sulik MA, Ph.D. is research associate at the University at Albany (SUNY) and founder of the Breast Cancer Consortium. more...

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