Caught Unaware: Timid Voices Against the “Silent Killer” Why Women Remain Uninformed About The Risk of Ovarian Cancer – Rachel Waltemyer
The Timid Voice: NOCC Breaks the Silence but is anyone hearing them?
If a disease were to infect 20,000 women this year and kill 16,000 of them (12), one would hope that women would seek to inform themselves about their risk. This disease is very real. Ovarian cancer has the highest mortality rate of all gynecological cancers, and is the fifth leading cause of cancer related death amongst women in the United States (4). Yet, in a recent survey only 15 percent of women were aware of the symptoms, and a staggering 82 percent have never spoken with their physicians about those symptoms or their risk of developing ovarian cancer (12). Additionally, of those who do not speak with their doctors, 54 percent say they did not because their physician did not initiate the discussion, leading them to believe that the disease should not concern them (12). With early detection (at stage I cancer limited to the ovary) the five-year survival rate in the U.S. is over 90 percent (14), yet due in part to lack of awareness, over 70 percent of cases will go undetected until the cancer has metastasized beyond the pelvis (most often stages III and IV) (2). In the latter instances, the prognosis is much poorer and the five-year survival rate drops to 15 percent (2).
Judging by numbers, the risks cannot be ignored, so how is it possible that such a serious condition breeds so little awareness? NOCC, the National Ovarian Cancer Coalition, launched a national education campaign, “Break the Silence,” in 2006 in attempt to address this very issue (12). However, there are several areas in which this campaign falls short. To effectively combat ovarian cancer and bring about greater awareness, the action cannot rest solely upon individual women; they need the support and involvement of their physicians as well as the information available through their doctors and organizations like NOCC. The campaign relies heavily on individuals to be proactive, it lacks a sense of self-efficacy that would allow women to feel as though they can influence their health outcomes, and the campaign fails to address fears associated with the treatment for ovarian cancer. Each of these aspects combine to make “Break the Silence” an exercise in futility.
Conversation starting: Talking about something you never knew existed
One of the initiatives in NOCC’s battle to bring ovarian cancer to the forefront is to have women talk to their doctors about their risk for developing the disease. Some possible complications for the encouragement of women to be proactive have already been addressed. The NOCC is correct in their assessment that women need to discuss ovarian cancer with their physicians. However, most people do not talk to their doctors about diseases they themselves know nothing about; with only 15 percent of women aware of the symptoms of ovarian cancer, it should come as little surprise that few women perceive any risk to themselves, and therefore make no effort to discuss the disease and their susceptibility with their health care providers (12). Why would a woman begin a conversation with her doctor about a disease that she is not even thinking about, and why would it be a consideration for her if she had no concept of the symptoms with which it presented?
The primary problem lies with spreading knowledge about ovarian cancer. Without the advocacy and involvement of physicians they cannot hope to accomplish this goal. Women will not seek the tools they need, like NOCC’s conversation starter, if they know nothing about ovarian cancer in the first place. Studies examining perceived risk and worry about ovarian cancer often claim that the results cannot be generalized as the methods of recruitment and the participants are likely more informed about ovarian cancer than the general population (1) NOCC had a radio public service announcement campaign in place in fall, but only for the month of September in 2006 (13), declared by President George W. Bush as National Ovarian Cancer Awareness month in August of 2006 (3). Additionally another ovarian cancer organization, the Ovarian Cancer National Alliance (OCNA), has a national add campaign on television and radio, however these ads and announcements do not reach a widespread audience: the television advertisement was noted to run after midnight during reruns of Law and Order SVU on USA television network, clearly not prime time. With these tools, the NOCC hopes to encourage women to take a proactive role in their health, but there is little evidence that women are hearing their message. The Society of Gynecological Oncologists contends, “most women are still unaware of their risk factors and the early signs and symptoms of gynecological cancers (16).” In a recent poll, 47 percent of women were unable to name a single symptom of gynecological cancer (8).
Without physicians’ advocacy, women will not be informed about the dangers of ovarian cancer. Even doctors recognize this necessity; Dr. Lee P. Shulman encourages physicians to become better listeners for the symptoms of ovarian cancer and attempt to more accurately assess the risks of their patients (15). To reiterate, 54 percent of women who hadn’t spoken to their doctors about ovarian cancer neglected to do so because their doctor never brought it up which led them to believe there was not cause for concern (12). This clearly indicates that with some simple interventions on the part of physicians women may go out and seek the education offered by NOCC, OCNA and other sources. Women may need the encouragement of their doctors to take a more active role in their health.
Killing silently, scare tactics overshadow self-efficacy
One of the most cited statistics about ovarian cancer is its status as the deadliest of all gynecological cancers (10). It is commonly referred to as the “Silent Killer” due to the non-specific symptoms that occur during the early stages of the disease and the high mortality rate associated with it once it is diagnosed (10,11). The statistics listed by NOCC are not all that encouraging at first glance. Additionally, it is frequently referred to as the “silent killer,” and also known as a stealthy killer and a whispering disease. Often depictions or discussions of the disease focus on the worst-case scenarios. More often than not “cases used to illustrate such descriptions are usually in the late stages of malignancy development and depict sad, depressing, and frightening outcomes and convey a sense of the inevitability of a painful death (9).” These frightening situations and statistics do have shock value on their side, but looking at the bigger picture, will they make women more likely to speak with their doctors or inform themselves further about ovarian cancer?
Women at high or even average risk for the development of ovarian cancer may feel more hesitant about the disease than informed and empowered after seeing the disheartening statistics. It is not empowering for a woman to perceive a diagnosis of ovarian cancer as a death sentence, or be told she may have a disease that the health field dubiously terms “silent killer.” Many women who perceived themselves at risk were found to be prone to feelings of hopelessness and depression (6). The potential for developing the disease also led them to feel anxiety or fear and at times, women assessed as high-risk feared loss of health insurance, leaving them utterly defenseless in the face of a disease that has clearly been set up as terrifying (6). This does not give a woman a sense of control over her health, or the idea that she can persevere regardless of her diagnosis. She may be less likely to approach her doctor regarding the issue of ovarian cancer if she feels she would not even have a fighting chance. Some studies suggest that anxiety generated by the possibility of a diagnosis of ovarian cancer can interfere with daily life or reduce the likelihood that a woman will adhere to treatment recommendations (6).
Armed with this knowledge, we might seek to initiate a campaign to promote awareness of ovarian cancer that focuses more on the signs, symptoms, and possible treatments as opposed to relying so heavily on the numbers that can generate negative emotions like sadness, fear, and anxiety. The estimation of their value as an attention-getter may only lead to defeat in the end, by generating a feeling of hopelessness. If women see ovarian cancer as a death sentence, then they may see little merit in seeking information regarding a diagnosis for a disease that they may think cannot be stopped.
Lack of Class awareness
In order to reach women with their message, NOCC has initiated an advertising campaign including public service announcements on the radio, the advent of an Ovarian Cancer Awareness month, and references in articles appearing in such publications as Ladies Home Journal, Women’s Day, Redbook, Family Circle, The New York Times, and The Cancer Letter (13). While these publications have a wide distribution, they certainly do not appeal to women of all cultural backgrounds, or of all socio-economic classes. The average reader of Ladies Home Journal has an annual income over $50,000 (17). Women’s Day boasts a similar median income (18). These numbers suggest that women of low SES are less exposed to the efforts of NOCC’s campaign. Although women of higher SES are often more likely to develop ovarian cancer (5), all women are still at risk and women who are poor are less likely to receive the treatment necessary to combat the disease, and thus more likely to die as a result (7). If we prepare all women with the information needed to have a dialogue with their physicians, then we can not only help early diagnosis, but also ensure proper treatment for those who develop cancer.
How to effectively “Break the Silence”
Taking on ovarian cancer cannot be limited to the responsibility of individual women, nor can it rest solely upon the shoulders of medical professionals. In one way, that is the most effective part of NOCC’s campaign, the attempt to start a dialogue. Still the nature of ovarian cancer makes it difficult to detect and thus difficult to combat, to be successful, no single person or group can bear responsibility, there must be cooperation between awareness groups, medical professionals, and the general population. The main issues are, getting the word out and making sure that women are informed, and that doctors are educated and willing to talk to them about the disease.
The NOCC does include the stories of survivors in its literature, giving some sense of hope in the light of discouraging statistics (14). Although only about 1 in 56 women will be diagnosed with ovarian cancer, it is still a serious disease that requires more attention from the medical community and the general population alike (19). With more money and a more focused concerted effort of the various groups involved with this disease, we could see some change in detection and survival rates and give those 20,000 women who will face ovarian cancer this year a fighting chance at survival.
- Anderson, M.R. et al. Worry about Ovarian Cancer Risk and Use of Ovarian Cancer Screening by Women at Risk for Ovarian Cancer. Gynecological Oncology 2002; 85: 3-8.
- Breedlove, G. Busenhart, C. Screening and Detection of Ovarian Cancer. Journal of Midwifery and Women’s Health 2005; 50: 51-54.
- Bush, George W. National Ovarian Cancer Awareness Month, 2006. Office of the Press Secretary. http://www.whitehouse.gov/news/releases/2006/08/20060829-8.html.
- Center for Disease Control and Prevention. Ovarian Cancer Initiatives. Atlanta, GA: Center for Disease Control and Prevention and Health Promotion: Division of Cancer Prevention and Control, 2006-2007.
- Dupler, Douglas. Ovarian Cancer. The Encyclopedia of Alternative Medicine. http://findarticles.com/p/articles/mi_g2603/is_0005/ai_2603000567.
- Franco, K. et al. Adjustment to Perceived Ovarian Cancer Risk. Psycho-Oncology 2000; 9: 411-417.
- Goff, Barbara A. Predictors of Comprehensive Surgical Treatment in Patient’s with Ovarian Cancer. Cancer. 2007.
- Karlan, Beth Y. Statement before the Subcommittee on Criminal Justice, Drug Policy and Human Resources. 9/7/2005.
- Koldjeski, D. et al. Health Seeking related to Ovarian Cancer. Cancer Nursing 2004; 27(5): 370-378.
- Mannix, J. et al. Ovarian Cancer: An update for nursing practice. International Journal of Nursing Practice 1999; 5: 47-50.
- McCorkle, R. et al. The Silent Killer: Psychological Issues in Ovarian Cancer. Holistic Nursing Practice 2003; 17(6): 300-308.
- Naden, Tracy. New Survey Reveals Alarming Lack of Awareness and Discussion about Leading Women’s Cancer Killer. National Ovarian Cancer Coalition, Inc. http://www.ovarian.org.
- National Ovarian Cancer Coalition. About the Program. National Ovarian Cancer Coalition, Inc. http://www.ovarian.org/default.aspx.
- National Ovarian Cancer Coalition. Woman to Woman: Ovarian Cancer Information and Insights. National Ovarian Cancer Coalition, Inc., 2006.
- Reader. Ladies Home Journal. 2006. http://www.meredith.com/mediakit/lhj/print/reader.htm.
- Reader Demographics. Women’s Day. 2004. http://www.hfmus.com/HachetteUSA/Page.asp?Site=womansday&Page=Demographics.
- Shulman, L. P. Ovarian Cancer: It’s Time to Act. The Female Patient. http://www.femalepatient.com/html/arc/edi/articles/1106.asp.
- Society of Gynecological Oncologists. Advocacy: H.R. 1245 and S. 1172 “Johanna’s Law: The Gynecological Cancer Education and Awareness Act of 2005”. 2007. http://www.sgo.org/policy/johannaslaw.cfm.
- Urban, N. Specific Keynote: Ovarian Cancer Risk Assessment and the Potential for Early Detection. Gynecological Oncology 2003; 88: S75-S79.