Cancer survivorship: a local and global issue

Cancer survivorship: a local and global issue

Perspectives Exhibition Cancer survivorship: a local and global issue www.thelancet.com Vol 382 August 10, 2013 of Fatigue, he describes how the fa...

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Perspectives

Exhibition Cancer survivorship: a local and global issue

www.thelancet.com Vol 382 August 10, 2013

of Fatigue, he describes how the fatigue he experienced during treatment “grew and at times replaced my recognition of self”. The highs and lows of his cancer experience are perceptively expressed through his photographs, leaving the viewer with an unforgettable visual memory of his journey through cancer—and of the importance of family and friends in this journey. The next part of the exhibition, “Without Borders: the Global Face of Cancer”, addresses the universal impact of cancer through the photographs of

“…a unique glimpse into the lives of cancer survivors” Carolyn Taylor, a survivor of ovarian and endometrial cancer. She logged more than 100 000 air miles photographing and interviewing cancer survivors, their families, caregivers, and medical professionals in 14 countries. Her intimate photographs remind the viewer that cancer is a global issue: she captures the shared personal experiences of survivors but the contrasting health-care settings in

which they are treated. Taylor has founded a non-profit organisation, Global Focus on Cancer, to help address the needs she saw around the world for cancer awareness and education. Some of the most affecting works feature in “Close to Home: CDC’s Stories of Survivorship”, which displays images and personal stories of 12 cancer survivors who are connected through their work for the CDC and portrayed through the lens of Bryan Meltz. Her larger-than-life portraits of epidemiologists, health scientists, officers in the US Public Health Service, public health advisers, and others underline the fact that cancer survivors are often those who surround us in our daily working lives. The focus on family is conveyed in a series of photographs of Adrienne, a 22-month-old girl with neuroblastoma, and her mother, a CDC employee. As her caregiver, Adrienne’s mother allows us to witness her struggles and fears for her child and her family. This family context is also apparent in images of a group of African-American women who share their experiences of breast cancer.

Cancer: Survivors in Focus David J Sencer CDC Museum, Centers for Disease Control and Prevention, Atlanta, Georgia, USA, until Sept 10, 2013 http://www.cdc.gov/museum/ exhibits/cancer.html For Global Focus on Cancer see http://www. globalfocusoncancer.org

John Kaplan

Those of us who have had the privilege of caring for patients with cancer often get caught up in the research, treatments and their side effects, and statistics. We get to know some of our patients better than others, but usually only within the context of a healthcare environment. How many of us truly consider the burden that cancer and its treatment place on patients, their families, and their communities during and after treatment? Cancer: Survivors in Focus, an exhibition at the David J Sencer CDC Museum in Atlanta, offers us a unique glimpse into the lives of cancer survivors. Key messages are interwoven throughout the exhibition: the timeline for cancer survivorship starts on the day of diagnosis; the definition of survivorship encompasses not only individuals with cancer but their families and communities; and survivorship and the cancer burden are a global concern. The exhibition uses three themes to explore the stories of cancer survivors and the challenges they face, whilst also calling attention to the ways in which the US Centers for Disease Control and Prevention (CDC) and the public health community are trying to ease the cancer burden through research and evidencebased interventions. The first part of the exhibition, “Not as I Pictured It”, is a personal journey by John Kaplan, a Pulitzer Prize winning photographer. His self-portraits document his daily experiences while receiving treatment for non-Hodgkin lymphoma. Kaplan’s journey through pictures, always poignant, at times humorous or painful, puts a face to some of the personal issues that we do not always discuss with our patients. A picture of his 4-year-old daughter, Carina, watching him have his head shaved is entitled Trying to Find The Father She Knew and urges the viewer to see what was happening to him through a child’s eyes. In another self-portrait, The Face

John Kaplan, Face of Pain Squeezing a camera remote hidden in his hand, John Kaplan, a patient with non-Hodgkin lymphoma, endures a bone marrow biopsy. Kaplan says that the pain was perhaps hardest on his caregiver, wife Li Ren-Kaplan, pictured on the right. “Li had to deal with thoughts of what it might be like if I was no longer here”, Kaplan says. A journalism professor at the University of Florida, Kaplan is now in full remission.

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Courtesy of David J. Sencer CDC Museum, © Bryan Meltz

Perspectives

Marcella at home with her two children, Nelson and Annalesia

Ann, a Lead Public Health Advisor in the Division of Cancer Prevention and Control, states that her breast cancer “was not mine” but rather belonged to her family, friends, and the health-care workers who supported her throughout her treatment. Her candid comments reveal how the statistics she encounters daily about cancer, and breast cancer among African-American women in particular, haunt her—at times she just can’t bear to hear the statistics at

all. Crystal, a Fellow in the Division of Toxicology and Human Health Services, is a breast cancer survivor and a BRCA1 mutation carrier. She states that her year of cancer therapy made her angry at times but taught her how “to receive unconditional love”. A year later, she finds herself “ready to get back to me—back to enjoying life”. Denise, an Analyst in the Office of the Associate Director for Science, sought a second opinion when she noticed a lump in

her breast. She urges other women to “know your body”, “seek a second or third opinion”, and overall “actively participate in your own health care”. The importance of early diagnosis is echoed in the story of Marcella, a Captain in the US Public Health Service. Although initially devastated by her illness, she quickly became grateful for the fact that her breast cancer was diagnosed early. Marcella now sees “my early diagnosis as a gift, and that’s really what I want other women to see”. There are an estimated 13·7 million cancer survivors in the USA. This compelling exhibition presents the specific concerns that these individuals face and highlights the importance of supporting the goals of the public health community in addressing the needs of survivors through research, surveillance, programmes, and policies to allow them to live healthy long lives.

*Ruth O’Regan, Joan Giblin Department of Hematology and Medical Oncology and the Winship Cancer Institute, Emory University, Atlanta, GA 30322, USA [email protected]

In brief Book Useful blunders

Brilliant Blunders: From Darwin to Einstein—Colossal Mistakes by Great Scientists that Changed our Understanding of Life and the Universe Mario Livio. Simon & Schuster, 2013. Pp 341, US$26·00. ISBN 9781439192368

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“Not only is the road to triumph paved with blunders, but the bigger the prize, the bigger the potential blunder”, argues astrophysicist Mario Livio’s in his elegant, entertaining, and instructive Brilliant Blunders. Livio takes five colossal mistakes by scientists that nevertheless proved productive for the development of science by others. He examines Charles Darwin’s adherence to an impossible mechanism of inheritance for his theory of evolution by natural selection; Lord Kelvin’s rejection of geological mantle convection leading to his hopeless underestimate for the Earth’s age; Linus Pauling’s chemically unacceptable triple-helix

structure for the nucleic acid DNA; Fred Hoyle’s advocacy of a steadystate model of the Universe against the big bang theory he named but distrusted; and Albert Einstein’s introduction into general relativity of his cosmological constant to account for what in 1917 was thought to be a static Universe. Along the way, Livio nails a few myths, most notably that Darwin was aware of Gregor Mendel’s theory of genetics. The chapter on Pauling is especially insightful with Livio concluding that “Pauling’s blunder was the result of overconfidence bred by previous success.” But he also mentions Pauling’s stated belief that it is better for science to publish

what one believes is a good idea than to hold back for fear of making a fool of oneself; and he discusses how as a chemist Pauling did not fully sense the importance of DNA to cell division and heredity, and was therefore less motivated than Francis Crick and James Watson to focus on DNA research exclusively. That said, Pauling’s role in the decoding of DNA in 1952–53 remains seminal. As Watson recalled of Pauling after his death: “he proclaimed that no vital forces, only chemical bonds, underlie life. Without that message, Crick and I might never have succeeded.”

Andrew Robinson [email protected]

www.thelancet.com Vol 382 August 10, 2013