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Taking it to heart—from patient to advocate for breast cancer
Perspectives
Book Taking it to heart—from patient to advocate for breast cancer Some time ago in Washington, DC, I walked into a meeting with three colleagues to talk about a project for older adults in Latin America. The hostess remarked “Rebeca, you are in the minority today.” We were all women, all about the same age, and from Latin America. Then, with a smile, she stunned me: “You are sitting here with three breast cancer survivors.” I suddenly felt strangely like an outsider among these women who had struggled with this disease and had came through on the other side. Later, reading Felicia Marie Knaul’s Tómatelo a Pecho, I gained much insight into the painful process a breast cancer diagnosis brings to a woman’s life. Knaul, a global health economist, writes compellingly about her experience as a patient with this disease in Mexico. Shocked by the unexpected news—she was young and without risk factors— Knaul recounts the psychological burden of making decisions and a paralysing uncertainty she felt about the future. In the middle of gathering knowledge, making decisions about her treatment options, and dealing with the prospect of death, her home and professional life continued—her two young children, her husband, her immediate and extended family, and her job. What to do? Who to talk to? Whose judgment to trust? Why me? She recalls feeling like “A cloud covers your brain and your senses go numb”. Knaul exposes the whole process she endured, from the first mammography to treatments, operations, and side-effects. She writes about seizing moments of joy in life and her recovery, re-emerging from the disease with a stronger sense of self about 2 years later. In the telling, we realise that this is a resourceful patient, who moves among groups of influential and prominent www.thelancet.com Vol 376 October 2, 2010
people in Mexico—Knaul’s physician husband Julio Frenk had been the country’s Minister of Health and later became Dean of Harvard’s School of Public Health. Knaul relates her awakening about the reality of breast cancer for other, less fortunate women in Latin America who do not have access to early detection, are without the necessary knowledge and empowerment to seek screening and make decisions, and do not have the financial resources to care for both their family and their health. So
“What could have been just another book about ‘when life gives you lemons, make lemonade’, dares to touch on larger issues of social justice relating to breast cancer in Latin America.” Knaul decided to do something to help and founded Cáncer de Mama: Tómatelo a Pecho, which literally means “Breast Cancer: Take it to Heart” but colloquially means “take it seriously”. As a result, she mobilised scholars, politicians, philanthropic organisations, and policy makers to promote awareness, increase knowledge, and make early breast cancer detection available in Latin America. It turns out that there is limited data on national and global trends in breast cancer for Latin America. Lack of information systems, inadequate cancer registries, and a general dearth of research prevail for many middleincome and low-income countries. Thus, for some countries, what is known is really a series of informed guesses. Studies based on small geographical areas are often used to produce national figures. In the past few decades, there seems to be an
increase in new cases and mortality from breast cancer in Latin America, especially in Uruguay, Argentina, and Brazil. Early detection seems to be a key strategy to reduce mortality, but this is costly in terms of infrastructure and human resources. Breast self-examination and clinical breast exams seem to be more feasible in poor countries, particularly in rural areas. As Knaul points out, all breast cancers are different, and the treatment is personal and depends on the type, stage, organs affected, and the individual’s resources, preferences, and tolerance for treatment. Early detection and personalised counselling for the patient, the family, and the social network are vital, she argues. What makes Tómatelo a Pecho such a powerful book is Knaul’s careful attention to detail about the technical aspects of the disease as well as the emotional, spiritual, and physical changes that the patient undergoes. What could have been just another book about “when life gives you lemons, make lemonade”, dares to touch on larger issues of social justice relating to breast cancer in Latin America. Knaul not only captures her suffering when she had all the resources at her disposal, but also conveys a visceral awakening that made her look beyond her own experience to that of other women. What hope can others hold when for so many women the recovery process is simply prohibitive? Tómatelo a Pecho is the story of a woman who made her own version of lemonade but went further in the face of social injustice. After reading the book, I felt like buying whatever Knaul and her colleagues in public health are selling. How could I not?
Tómatelo a Pecho Felicia Marie Knaul. Aguilar Fontanar, 2010. Pp 368. US$19·99. ISBN 6071102987. See Health Policy page 1186 For more on Cáncer de Mama: Tómatelo a Pecho see http:// www.tomateloapecho.org.mx
Rebeca Wong [email protected]
1135
Book Taking it to heart—from patient to advocate for breast cancer Some time ago in Washington, DC, I walked into a meeting with three colleagues to talk about a project for older adults in Latin America. The hostess remarked “Rebeca, you are in the minority today.” We were all women, all about the same age, and from Latin America. Then, with a smile, she stunned me: “You are sitting here with three breast cancer survivors.” I suddenly felt strangely like an outsider among these women who had struggled with this disease and had came through on the other side. Later, reading Felicia Marie Knaul’s Tómatelo a Pecho, I gained much insight into the painful process a breast cancer diagnosis brings to a woman’s life. Knaul, a global health economist, writes compellingly about her experience as a patient with this disease in Mexico. Shocked by the unexpected news—she was young and without risk factors— Knaul recounts the psychological burden of making decisions and a paralysing uncertainty she felt about the future. In the middle of gathering knowledge, making decisions about her treatment options, and dealing with the prospect of death, her home and professional life continued—her two young children, her husband, her immediate and extended family, and her job. What to do? Who to talk to? Whose judgment to trust? Why me? She recalls feeling like “A cloud covers your brain and your senses go numb”. Knaul exposes the whole process she endured, from the first mammography to treatments, operations, and side-effects. She writes about seizing moments of joy in life and her recovery, re-emerging from the disease with a stronger sense of self about 2 years later. In the telling, we realise that this is a resourceful patient, who moves among groups of influential and prominent www.thelancet.com Vol 376 October 2, 2010
people in Mexico—Knaul’s physician husband Julio Frenk had been the country’s Minister of Health and later became Dean of Harvard’s School of Public Health. Knaul relates her awakening about the reality of breast cancer for other, less fortunate women in Latin America who do not have access to early detection, are without the necessary knowledge and empowerment to seek screening and make decisions, and do not have the financial resources to care for both their family and their health. So
“What could have been just another book about ‘when life gives you lemons, make lemonade’, dares to touch on larger issues of social justice relating to breast cancer in Latin America.” Knaul decided to do something to help and founded Cáncer de Mama: Tómatelo a Pecho, which literally means “Breast Cancer: Take it to Heart” but colloquially means “take it seriously”. As a result, she mobilised scholars, politicians, philanthropic organisations, and policy makers to promote awareness, increase knowledge, and make early breast cancer detection available in Latin America. It turns out that there is limited data on national and global trends in breast cancer for Latin America. Lack of information systems, inadequate cancer registries, and a general dearth of research prevail for many middleincome and low-income countries. Thus, for some countries, what is known is really a series of informed guesses. Studies based on small geographical areas are often used to produce national figures. In the past few decades, there seems to be an
increase in new cases and mortality from breast cancer in Latin America, especially in Uruguay, Argentina, and Brazil. Early detection seems to be a key strategy to reduce mortality, but this is costly in terms of infrastructure and human resources. Breast self-examination and clinical breast exams seem to be more feasible in poor countries, particularly in rural areas. As Knaul points out, all breast cancers are different, and the treatment is personal and depends on the type, stage, organs affected, and the individual’s resources, preferences, and tolerance for treatment. Early detection and personalised counselling for the patient, the family, and the social network are vital, she argues. What makes Tómatelo a Pecho such a powerful book is Knaul’s careful attention to detail about the technical aspects of the disease as well as the emotional, spiritual, and physical changes that the patient undergoes. What could have been just another book about “when life gives you lemons, make lemonade”, dares to touch on larger issues of social justice relating to breast cancer in Latin America. Knaul not only captures her suffering when she had all the resources at her disposal, but also conveys a visceral awakening that made her look beyond her own experience to that of other women. What hope can others hold when for so many women the recovery process is simply prohibitive? Tómatelo a Pecho is the story of a woman who made her own version of lemonade but went further in the face of social injustice. After reading the book, I felt like buying whatever Knaul and her colleagues in public health are selling. How could I not?
Tómatelo a Pecho Felicia Marie Knaul. Aguilar Fontanar, 2010. Pp 368. US$19·99. ISBN 6071102987. See Health Policy page 1186 For more on Cáncer de Mama: Tómatelo a Pecho see http:// www.tomateloapecho.org.mx
Rebeca Wong [email protected]
1135