News News Cancer Out of the Closet: Support Emerges Over Two Decades
Georgia Photopulos
1130
"specifically written and tested for various reading levels and numerous kinds of support groups." The types of books available about cancer have changed, too, according to Johnson. "Early books were mostly personal accounts, and [the authors] died. Books now are more about personal empowerment. They give patients options." There is a movement toward self-care.
Little Hope "Stories in the 1970s about cancer patients such as Nat King Cole, Brian Piccolo, and John Wayne, always ended with the hero's death," Photopulos said. "They are very poignant and emotional stories, certainly, but filled with despair," she said, offering people "plenty to cry about, little to take hope in." Photopulos has written about her experience in Of Tears and Triumphs, a "guidebook to educate professionals, caregivers, and family members on the emotional needs of cancer patients." During the early years of her 20-year struggle with cancer, Photopulos found few opportunities to deal with the fear, anxiety, and distress her illness brought. In response, she organized a 24-hour-a-day telephone service for patients and their families in June 1973. Photopulos also assisted in establishing the National Cancer Institute's nationwide toll-free Cancer Information Service. Pat Fobair, clinical social worker at Stanford University Medical Center, sees the American Cancer Society as a major force behind the change. "ACS raised issues and stimulated action and awareness of early detection, as well as
Improved Prognosis In 1990, however, when their second book Triumph was published, "people were willing to talk about it. We had none of those problems." Morra feels part of the willingness to talk about cancer now is improved prognosis. "We are able to say 'cure.' In the 1970s, no one was talking cure. "The media have played an enormous role," she said. "There has been an explosion in information. Few newspapers had health reporters; now there is a health reporter in every major newspaper. People want to hear and
Dr. Judith Johnson
Journal of the National Cancer Institute
Downloaded from http://jnci.oxfordjournals.org/ at University of Michigan on April 19, 2015
Diagnosed with breast cancer in 1968, Georgia Photopulos sought support and information about her disease. She and her husband found that "Our opportunities to talk about this stress, to find ways for dealing with it, were practically nonexistent." Judith Johnson, Ph.D., is co-founder of the American Cancer Society's / Can Cope program, which began in 1977. "It was very difficult to identify any structured educational programs in the 1970s." Written materials for patients were limited; educational materials were written for health professionals. Johnson remembers a lot of excitement in 1978 over Make Today Count, a patient education program for coping with cancer and other life-threatening diseases. "This was very innovative and new," she said. "There are numerous educational materials now," Johnson added,
provided professional education," she said. "No doubt there's been a big change," said Marion Morra, assistant director of the Yale University Comprehensive Cancer Center, New Haven, Conn. Morra said she had a hard time getting on television shows in the 1970s to promote Choices, a book for cancer patients she co-authored with her sister, Eve Potts.
News News
1 9^9 1 This article is part of a series carried in each 1991 issue of the News section contrasting the knowledge of cancer in 1971 with that In 1991.
discuss health." The result is a more informed, sophisticated population, she added. Morra, who is coordinator of the Connecticut Cancer Information Service, said information specialists are spending more time on the telephone with callers because people are asking more complex questions. Leadership of prominent cancer patients in the 1970s and 1980s was a strong force, Fobair said. "Rose Kushner galvanized medical and consumer issues." Kushner, a well-known breast cancer patient and advocate, died in January 1990.
Living with Cancer "In the 1980s, we saw the emergence of the educated consumer," said Katherine Crosson, chief of NCI's Patient Education Section. Information in the early 1970s was limited to basic treatment, she said. "The emphasis now is on the psychosocial piece — how you live with cancer." The 1980s have also seen the emergence of groups such as the National Coalition for Cancer Survivorship and Cancervive, offering support to their
Vol. 83, No. 16, August 21, 1991
Stigma Diminishing A 15-year survivor of Hodgkin's disease, Soiffer said the impact of having cancer is slowly diminishing, partly because of the AIDS epidemic. "It has displaced some of the stigma." In the past when people would say, 'What is the worst thing I could get?' they would think of cancer. Now, he said, AIDS is more of a death sentence. "One-half of those diagnosed with cancer today will survive," Soiffer said. Though diminishing, Soiffer said "the cancer stigma lives on." He cited the fact that one in four cancer survivors faces job discrimination; and one in four can't get adequate health insurance. He feels the media perpetuate the stigma of cancer by "hyping human tragedy," such as Michael Landon's death from pancreatic cancer, and paying little attention to stories like that of Paul Tsongas, retired U.S. Senator from Massachusetts and 8-year survivor of non-Hodgkin's lymphoma, who recently announced his candidacy for president. BiiiSoiifcr
Barrie Cassileth, Ph.D., said the cancer stigma still exists among the elderly, but the younger generation's views are replacing the old views. The older generation grew up in a time when cancer was not discussed. "The word cancer was not allowed in print. It wasn't even included in obituaries," she said. During the 1970s and 1980s, Americans also witnessed great biomedical advances, which allowed scientists to prolong life artificially. Cassileth explained that these changes raised a number of issues, like living wills and when to stop treatment. Before this time, discussions of death, cancer, and cancer treatment were taboo. "Now you can hardly pick up a magazine and not find an article on cancer," she said. — By Julie A. Steele
NEWS
1131
Downloaded from http://jnci.oxfordjournals.org/ at University of Michigan on April 19, 2015
members and beginning to address issues such as discrimination. "Cancer is coming more out of the closet," said Bill Soiffer, NCCS member and author of Life in the Shadow, which documents, through stories of people with Hodgkin's disease, the extent to which cancer survivors feel stigmatized. Doctors wouldn't discuss a diagnosis of cancer with patients in the 1930s, 1940s, or 1950s, Soiffer said. "In the 1960s, things began to change."
Georgia Photopulos
1130
"specifically written and tested for various reading levels and numerous kinds of support groups." The types of books available about cancer have changed, too, according to Johnson. "Early books were mostly personal accounts, and [the authors] died. Books now are more about personal empowerment. They give patients options." There is a movement toward self-care.
Little Hope "Stories in the 1970s about cancer patients such as Nat King Cole, Brian Piccolo, and John Wayne, always ended with the hero's death," Photopulos said. "They are very poignant and emotional stories, certainly, but filled with despair," she said, offering people "plenty to cry about, little to take hope in." Photopulos has written about her experience in Of Tears and Triumphs, a "guidebook to educate professionals, caregivers, and family members on the emotional needs of cancer patients." During the early years of her 20-year struggle with cancer, Photopulos found few opportunities to deal with the fear, anxiety, and distress her illness brought. In response, she organized a 24-hour-a-day telephone service for patients and their families in June 1973. Photopulos also assisted in establishing the National Cancer Institute's nationwide toll-free Cancer Information Service. Pat Fobair, clinical social worker at Stanford University Medical Center, sees the American Cancer Society as a major force behind the change. "ACS raised issues and stimulated action and awareness of early detection, as well as
Improved Prognosis In 1990, however, when their second book Triumph was published, "people were willing to talk about it. We had none of those problems." Morra feels part of the willingness to talk about cancer now is improved prognosis. "We are able to say 'cure.' In the 1970s, no one was talking cure. "The media have played an enormous role," she said. "There has been an explosion in information. Few newspapers had health reporters; now there is a health reporter in every major newspaper. People want to hear and
Dr. Judith Johnson
Journal of the National Cancer Institute
Downloaded from http://jnci.oxfordjournals.org/ at University of Michigan on April 19, 2015
Diagnosed with breast cancer in 1968, Georgia Photopulos sought support and information about her disease. She and her husband found that "Our opportunities to talk about this stress, to find ways for dealing with it, were practically nonexistent." Judith Johnson, Ph.D., is co-founder of the American Cancer Society's / Can Cope program, which began in 1977. "It was very difficult to identify any structured educational programs in the 1970s." Written materials for patients were limited; educational materials were written for health professionals. Johnson remembers a lot of excitement in 1978 over Make Today Count, a patient education program for coping with cancer and other life-threatening diseases. "This was very innovative and new," she said. "There are numerous educational materials now," Johnson added,
provided professional education," she said. "No doubt there's been a big change," said Marion Morra, assistant director of the Yale University Comprehensive Cancer Center, New Haven, Conn. Morra said she had a hard time getting on television shows in the 1970s to promote Choices, a book for cancer patients she co-authored with her sister, Eve Potts.
News News
1 9^9 1 This article is part of a series carried in each 1991 issue of the News section contrasting the knowledge of cancer in 1971 with that In 1991.
discuss health." The result is a more informed, sophisticated population, she added. Morra, who is coordinator of the Connecticut Cancer Information Service, said information specialists are spending more time on the telephone with callers because people are asking more complex questions. Leadership of prominent cancer patients in the 1970s and 1980s was a strong force, Fobair said. "Rose Kushner galvanized medical and consumer issues." Kushner, a well-known breast cancer patient and advocate, died in January 1990.
Living with Cancer "In the 1980s, we saw the emergence of the educated consumer," said Katherine Crosson, chief of NCI's Patient Education Section. Information in the early 1970s was limited to basic treatment, she said. "The emphasis now is on the psychosocial piece — how you live with cancer." The 1980s have also seen the emergence of groups such as the National Coalition for Cancer Survivorship and Cancervive, offering support to their
Vol. 83, No. 16, August 21, 1991
Stigma Diminishing A 15-year survivor of Hodgkin's disease, Soiffer said the impact of having cancer is slowly diminishing, partly because of the AIDS epidemic. "It has displaced some of the stigma." In the past when people would say, 'What is the worst thing I could get?' they would think of cancer. Now, he said, AIDS is more of a death sentence. "One-half of those diagnosed with cancer today will survive," Soiffer said. Though diminishing, Soiffer said "the cancer stigma lives on." He cited the fact that one in four cancer survivors faces job discrimination; and one in four can't get adequate health insurance. He feels the media perpetuate the stigma of cancer by "hyping human tragedy," such as Michael Landon's death from pancreatic cancer, and paying little attention to stories like that of Paul Tsongas, retired U.S. Senator from Massachusetts and 8-year survivor of non-Hodgkin's lymphoma, who recently announced his candidacy for president. BiiiSoiifcr
Barrie Cassileth, Ph.D., said the cancer stigma still exists among the elderly, but the younger generation's views are replacing the old views. The older generation grew up in a time when cancer was not discussed. "The word cancer was not allowed in print. It wasn't even included in obituaries," she said. During the 1970s and 1980s, Americans also witnessed great biomedical advances, which allowed scientists to prolong life artificially. Cassileth explained that these changes raised a number of issues, like living wills and when to stop treatment. Before this time, discussions of death, cancer, and cancer treatment were taboo. "Now you can hardly pick up a magazine and not find an article on cancer," she said. — By Julie A. Steele
NEWS
1131
Downloaded from http://jnci.oxfordjournals.org/ at University of Michigan on April 19, 2015
members and beginning to address issues such as discrimination. "Cancer is coming more out of the closet," said Bill Soiffer, NCCS member and author of Life in the Shadow, which documents, through stories of people with Hodgkin's disease, the extent to which cancer survivors feel stigmatized. Doctors wouldn't discuss a diagnosis of cancer with patients in the 1930s, 1940s, or 1950s, Soiffer said. "In the 1960s, things began to change."
