Transnational Breast Cancer Advocacy in the United States and Germany

Alissa Bellotti

University of Haifa

Dr. Alissa Bellotti is a DAAD/AICGS Research Fellow from August to October 2021. She is a Lecturer (Assistant Professor) at the University of Haifa in Israel where she is a member of the General History Department and the Haifa Center for German and European Studies (HCGES). She holds a PhD in History from Carnegie Mellon University. The focus of her research is postwar and contemporary histories of East and West Germany, especially the politics of transnational pop-cultural transfer and exchanges across the Iron Curtain. Her first project (PhD thesis) explored these issues through an analysis of the entangled politics of East and West German youth culture during the late Cold War.

At the American Institute for Contemporary German Studies Dr. Bellotti will research a new project analyzing transnational breast cancer patient advocacy movements. This comparative study will reconstruct the very different histories of breast cancer advocacy in Germany, the United Kingdom, and the United States and explain how patient activists have become a new force for political and social change. Ultimately, this research addresses how and why Western publics have shifted their trust from governments and their partner scientific institutions to interest groups representing smaller, identity-based slices of society.

The DAAD/AICGS Research Fellowship is supported by the DAAD with funds from the Federal Foreign Office.

In recent years, German breast cancer advocacy groups have begun taking a more American approach. Since the 2001 founding of Brustkrebs Deutschland e.V., with financial backing from U.S. cosmetics company Estée Lauder, German companies like household appliance manufacturer Rowenta have begun selling pink-themed domestic appliances while multinational pharmaceutical companies, including Pfizer and GSK (GlaxoSmithKline), now sponsor German breast cancer nonprofits. These recent developments are unexpected because the history of the American and German breast cancer advocacy movements has been one of divergence. Although driven at first by similar problems, the two movements deviated sharply in the 1970s and, by the 1990s, claimed entirely different accomplishments.  With this in mind, two questions emerge: What caused the movements to diverge originally and what forces are bringing them back into alignment recently? This essay tracks the common origins of the American and German movements, explains their different trajectories after the 1970s, and outlines some of the consequences of this divergence, especially those facing German women.

The Twin Problems Facing Female Patients

The American breast cancer advocacy movement is one of, if not the, most visible health advocacy movements in the world. It is little wonder that activists in Germany and elsewhere seek to emulate it. But the ties between the American breast cancer movement and its German counterpart can also be explained by the common problems that the two movements have faced. More specifically, understanding the American movement’s origins in a set of two connected problems that faced American and German women seeking treatment for the disease can help us understand why the American movement has been so successful at solving these problems, and why the same problems lingered in Germany for another twenty years.

Throughout most of the twentieth century, the first problem that women diagnosed with breast cancer faced was paternalism in the medical profession. Doctors would often conceal a diagnosis of breast cancer from their patients, telling them instead that they had a lesser problem, such as an ulcer, that could turn into cancer without treatment. This practice of sparing the patient persisted into the 1990s in Germany.[1] When it came time to finally tell them of their disease, doctors most often presented only one treatment option, especially in the United States, the Halsted radical mastectomy followed by aggressive radiotherapy. In this operation, the breast tissue, skin, nipple, associated lymph nodes, and both of the underlying pectoral muscles were all removed. Doctors glossed over side effects of the surgery such as lymphedema rates of 50-70 percent (this is swelling of the lymph nodes that restricts movement on the affected side) and severe pain that could last for years. These decisions came from a place of compassion. The medical understanding of breast cancer at the time dictated an aggressive treatment regime, so why not spare women the anxiety before a necessary surgery? But even if doctors had the best of intentions, their actions demonstrate the extreme paternalistic approach most doctors took to breast cancer patients.[2]

Other medical practices are harder to defend. In the 1950s and 1960s, American doctors typically did not provide any after-care instructions following surgery or physical therapy exercises that could help patients recover mobility and reduce pain. Nor did most medical doctors consider emotional health to be part of their purview, and women’s complaints that their needs were not being met were pathologized in medical literature and shrugged off in the clinic. In one case an American woman’s surgeon told her after a mastectomy to “stuff an old stocking in there and get on with your life.”[3] Through the 1970s, due to the prevailing theory of how breast cancer spread in the body, the radical mastectomy was both the ‘gold standard’ of treatment and a one-size-fits-all solution to breast cancer. Paternalism, overt sexism, and the scientific understanding of this particularly female disease combined and left women (and certainly some men too) with few sources of support during a life-threatening illness and sub-standard delivery of medical services.

Paternalism, narrow definitions of acceptable female roles, and gender-based stereotypes combined in medical characterizations such as this to ensure that female breast cancer patients did not get the care or information that they needed.

The second problem that women faced was silence. This problem affected not just those women diagnosed with breast cancer, but all women. Throughout most of the twentieth century, a strong taboo existed across Western countries that precluded patients from discussing their disease, even with family or close friends. Cancer is one of humanity’s great fears, a fear that was even more intense in the past when there were fewer effective treatments than there are today. At its very best, a cancer diagnosis promises a massive disruption to one’s life, a dark blot in a life’s story that can last for years. At its worst, cancer is not a “good death.” Breast cancer, however, evoked a special kind of reticence. Breasts are the most obvious outward sign of female sexuality and motherhood. For this reason alone, breast cancer could not be openly discussed in most social situations. Moreover, when a woman lost a breast to mastectomy, which was almost inevitable following diagnosis through the 1970s, the social pressure to avoid talking about it was often compounded by women’s own reluctance to discuss something that made them feel ugly, sexually deficient, less motherly, and sapped of confidence.

This situation should evoke our sympathy, but the effects of this social taboo were substantively pernicious too. Although doctors claimed that early detection was the key to surviving the disease, women had little information about the symptoms of breast cancer, nor did they know of any techniques for self-exams. Lack of reliable information and stigma meant that they ended up in the clinic later in the course of the disease than they otherwise might have, and their prognoses were consequently worse. This social pressure to hide the illness meant that none of the women’s needs were met. For the physical and mental effects of treatment, and of the disease itself, there was little guidance to be had as most doctors did not consider these issues to be in their purview and, up until the 1970s, there were no networks for swapping information or sharing emotional support among patients.

In West Germany, some of the social pressure to avoid discussing or treating the psychological effects of breast cancer came from the medical establishment. In the 1970s, some doctors spoke of a “Type C” personality, by which they meant a “cancer personality.” The “breast cancer personality” received special scholarly attention. According to one essay on psychosomatic illnesses, it was “here [that] the premorbid disturbance of female identification, rejection and/or frustration of the mother role, as well as negative attitudes towards pregnancy, birth and breastfeeding could be found.” After this Freudian beginning, the author noted that other studies showed that “sexual withdrawal and breast cancer correlate positively. Breast cancer patients showed greater social isolation than corresponding control subjects; they were also more neurotic, more inactive, more depressed, and more likely to be hypochondriacs.”[4] Paternalism, narrow definitions of acceptable female roles, and gender-based stereotypes combined in medical characterizations such as this to ensure that female breast cancer patients did not get the care or information that they needed.

How to Build the Most Visible Health Advocacy Movement in the World

This was the situation in the United States and West Germany until the mid-1970s. It is during this decade that the two national stories begin to diverge. The origins of the American movement lie in grassroots efforts to organize patients with more experience of the disease to help newly diagnosed patients. In this sense, it is similar to the history of the movement in Germany.

Women-helping-women was the ethos behind the earliest breast cancer advocacy in the United States. After surviving breast cancer and radical mastectomies in 1953, New Yorker Terese Lasser and Philadelphian Fan Rosenau convinced hospitals in their cities that newly diagnosed breast cancer patients would benefit from talking to a survivor, someone with more experience and direct knowledge. The training program that developed out of their efforts, called Reach to Recovery, was eventually absorbed by the American Cancer Society (ACS) and expanded to Europe in 1974.[5] It was around this time, the mid-1970s, that women’s anger over breast cancer treatment began to spill into the American public sphere. The women’s health movement was underway with the publication of Our Bodies, Ourselves in 1973 by the Boston Women’s Health Book Collective. Two respected journalists published accounts of their own experiences being diagnosed and treated for breast cancer. Babette Rosmond published “The Right to Choose” in McCall’s magazine discussing her decision to have a lumpectomy rather than a mastectomy. Shortly after, Rose Kushner wrote an account of her experience mixed with information that “every woman should know to save her life,” circumventing the ACS’s near-monopoly on informational materials for breast cancer patients. She then went on to found the Breast Cancer Advisory Center in 1975.

What had once been a shameful illness in the United States had been reinvented. From the 1980s on, American women with breast cancer were present in public discourse.

While the institutions of a nascent movement took shape, American celebrities were lending their fame to dragging the disease into the public spotlight. In 1973, movie star and ambassador Shirley Temple Black announced on radio and television not only that she had been diagnosed with breast cancer but that she had had a modified radical mastectomy. The next year, just weeks after becoming first lady, Betty Ford underwent a mastectomy and then spoke openly about the operation with Time Magazine. Only weeks later, Happy Rockefeller, the wife of Vice President Nelson Rockefeller, announced that she had just undergone her own double mastectomy. These political wives were careful to present themselves as feminine model patients who were optimistic about their treatment, but despite the narrowness of their personal narratives, the two announcements in such quick succession to one another raised enough awareness that a noticeable increase in the number of breast cancers diagnosed soon followed, the so-called “Betty Ford blip.”

Throughout the 1980s, the number and diversity of support groups proliferated to cover women’s emotional, physical, legal, and informational needs, although most of these were located only in urban centers. This also included patients’ growing political needs and new organizations like Breast Cancer Action (BCA) increasingly took the fight for more awareness and research for a cure to Washington, and events like the first Mother’s Day March for Breast Cancer Awareness were organized in 1991. However, one new organization, Susan G. Komen for the Cure combined education, political advocacy, and individual fundraising in novel and influential ways. Founded in 1982, after Texan Nancy Brinker lost her sister Susan to breast cancer, the foundation amplified the new openness about breast cancer when publicizing their events and encouraging women across the United States to hold their own Race for the Cure in a sort of volunteer-run franchise model. The emphasis on being active, vital, on “not accepting your diagnosis sitting down” appealed to many patients and allowed their friends and family to be involved in their care, although in a way that left actual medical decisions and the messiness of treatment behind the screen of privacy.

Despite the many criticisms, what had once been a shameful illness in the United States had been reinvented. From the 1980s on, American women with breast cancer were present in public discourse. They were portrayed in media not as feeble sufferers incapable of understanding complex information, but as pink-clad warriors who were fighting against the enemy breast cancer, one foot race at a time. This is a remarkable transformation. Moreover, it marked the birth of a new political identity: the female patient activist. Breast cancer had been recast as a woman’s problem, not just a problem more likely to affect women.

A Different Trajectory in Germany

There is very little existing research on breast cancer advocacy and support organizations in Germany, but from what we do have it is evident that the development of the German movement was different from that in the United States in at least three ways.

First, it is probable that the nascent breast cancer advocacy movement met with more resistance from the German medical establishment than was the case in the United States. Beginning in the 1970s, the most common support organizations for breast cancer patients in Germany were self-help groups. These were local organizations funded by donations, most specific to one type of cancer or single other disease, that worked to put patients in touch with doctors, psychologists, and insurance companies, offer information about their disease, provide a community space, and offer courses like yoga, gymnastics, or painting. As innocuous as this sounds today, the umbrella organization for women with cancer, Frauenselbsthilfe nach Krebs (women’s self-help after cancer), reported that in their early days the medical establishment viewed their efforts as “an incursion into their professional territory of questionable merit.”[6] Within the pages of their medical journals, doctors even speculated that the closely allied Women’s Health Centers grew out of the same dangerous leftism as the German terrorists of the 1970s.[7]

Secondly, while the U.S. movement benefitted from both a common enemy and star-powered support, the German movement had neither. The common enemy around which journalists, feminists, and activists rallied in the United States was the Halsted radical mastectomy, which persisted as the default treatment for breast cancer long after it had become clear that there was no evidence that this operation was more successful than less invasive options. It thus served as a clear symbol of paternalistic medicine that treated the disease rather than the patient. German women faced the same type of paternalism, but surgeons in Europe had slowly shifted away from the radical mastectomy in favor of less invasive surgeries. They did this in response to the first controlled trials to show that more aggressive operations did not produce significantly better survival rates when it came to breast cancer, some of the best of which were done in Europe. Femininity and the psychological effects of disfigurement were not the reason for the change, but it nonetheless “deprived” the German movement of a potent symbol. Additionally, the German movement could not count on the publicity that celebrities could bring to the issue as was the case in America. Although it is still unclear why, German celebrities who were diagnosed with breast cancer chose not to publicly discuss their disease or treatment until the late 1990s.

While the U.S. movement benefitted from both a common enemy and star-powered support, the German movement had neither.

The combined effect of these differences in the two movements was to create a trajectory of progress in Germany that was much shallower than in the United States. The Susan G. Komen Foundation, an early leader in pink-ribbon culture, volunteer fundraising, and corporate sponsorships, approved its first international affiliates in 2000, one of which was in Frankfurt. The new chapter was the work of a group of dedicated women, some American and some Germans who had previously lived in the United States, who ardently believed that German women needed Komen’s model. In their application, the women were amazed that “in Germany, people don’t talk about breast cancer. There’s a sort of shyness about the issue. It’s difficult to get survivors to share their experiences. Celebrities who’ve had breast cancer don’t come forward and talk about their experience with cancer the way they do in the United States.”[8] They wanted the Race for the Cure and Komen’s other awareness-raising activities to work the same magic as it had in the United States, as they saw it, and force breast cancer into public discourse in Germany.

It is true that the rate at which breast cancer entered the public discourse in the United States was exceptionally fast; little more than a decade elapsed between when Babette Rosmond published her article on her lumpectomy and mastectomy scars were being featured on the front page of the New York Times Magazine.[9] Some German oncologists believed that most of their patients would not be comfortable talking about their disease outside of the clinic as late as 1999.[10]

Finally, when American organizations created their first affiliates in Germany to do the education and fundraising work that had become so common and successful in the United States, they ran into cultural and regulatory differences. For example, although the first Race for the Cure in Germany was a fundraising and awareness-raising success, the organizing committee noted several problems that were specific to Germany. Some regulatory differences made it harder to fundraise. German hospitals were publicly owned and not permitted to sponsor any charity events, though German hospitals could partner with nonprofits in other non-monetary ways. Pharmaceutical companies also faced more stringent regulations. They were not allowed to market directly to consumers, so that meant partners like Roche and Johnson & Johnson would not be able to have booths at the races advertising their products. Then there were the cultural differences. The biggest of these was that Germans were unfamiliar with the idea of fundraising as individuals. It was not clear to the participants how running in a footrace could raise money for breast cancer support and education. The new Komen affiliate which organized the race had to teach Germans both to run for a cause and to fundraise as individuals as neither were part of the culture there.

It appears then that the German and American movements diverged because of greater resistance from the medical establishment in Germany, the lack of a common enemy and celebrity champion there, and regulatory and cultural differences that limited the scope of direct transplants across the Atlantic. These hurdles were significant and set awareness and openness in discussing breast cancer back some twenty years in Germany. In light of this history, it is curious that the two movements should show signs of convergence now.  It is also notable that the elements that some German organizations like Brustkrebs Deutschland have chosen to emulate are those that have garnered American organizations fiery criticism in recent years: Partnerships with pharmaceutical companies that make chemotherapy drugs, pink-themed merchandising from which only a percentage of profits are donated, a relentlessly optimistic culture, and increasingly political activism. These recent developments deserve additional attention and will be the focus of my further research.

[1] Bettina Hitzer, ‘Krebs fühlen. Die Emotionsgeschichte der Krebserkrankung im 20. Jahrhundert’ (Habilitationsschrift, Berlin, Freie Universität Berlin, 2017), 30.

[2] An American doctor later popularized an even more radical procedure that removed several ribs as well. Barron H. Lerner, The Breast Cancer Wars: Hope, Fear, and the Pursuit of a Cure in Twentieth-Century America (Oxford: Oxford University Press, 2001), 32–33.

[3] Lerner, The Breast Cancer Wars, 140–45.

[4] Silke Kirschning, Brustkrebs: Der Diagnoseprozess Und Die Laute Sprachlosigkeit Der Medizin, Eine Soziologische Untersuchung (Wiesbaden: VS Verlag für Sozialwissenschaften, 2001), 24.

[5] This early effort was successful in part because it was apolitical and because it shared the philosophy of the ACS in convincing women that their breast cancer was not a disabling handicap. The volunteers were not allowed to give any medical advice during their visits, avoiding the chance that patients might come to question something their doctor had ordered after speaking with a volunteer. Brenner, Barbara, ‘Sister Support: Women Create A Breast Cancer Movement’, in Breast Cancer: Society Shapes an Epidemic, ed. Anne S Kaspar and Susan J Ferguson (New York: Springer, 2016), 327.

[6] Frauenselbsthilfe nach Krebs, ‘40 Jahre Frauenselbsthilfe Nach Krebs. Ein Rückblick Auf Vier Jahrzehnte’, n.d., 10.

[7] Ulrich Wolff, ‘Vom Feministinnen, Hexen, Kräutern und Gynäkologen’, Deutsches Ärzteblatt 7 (February 1979): 454.

[8] ‘General Needs Assessment for Hessen, Germany’ (Frankfurt, 1999), Folder 40, Germany affiliate application, 1999: 1022-001, Susan G. Komen Breast Cancer Foundation Archive, Southern Methodist University.

[9] Matuschka, ‘You Can’t Look Away Anymore’, The New York Times Magazine, 15 August 1993.

[10] Aktion: Bewußtsein für Brustkrebs, ‘Informing – Taking Away Fear – Promoting Early Detection’ (n.d.), Folder 40, Germany affiliate application, 1999: 1023-001, Susan G. Komen Breast Cancer Foundation Archive, Southern Methodist University.

Supported by the DAAD with funds from the Federal Foreign Office (FF).