- Email: [email protected]
“What Doesn't Kill You Makes You Stronger”: An Ovarian Cancer Survivor Survey
Gynecologic Oncology 83, 537–542 (2001) doi:10.1006/gyno.2001.6437, available online at http://www.idealibrary.com on
“What Doesn’t Kill You Makes You Stronger”: An Ovarian Cancer Survivor Survey D. E. Stewart, M.D.,* ,1 F. Wong, M.B.B.S.,* S. Duff, B.Sc.,* C. H. Melancon, M.N.,† and A. M. Cheung, M.D., FRCPC* *University Health Network, University of Toronto, Toronto, Ontario M5G 2N2, Canada; and †CONVERSATIONS! The International Newsletter For Those Fighting Ovarian Cancer Received January 17, 2001
increasing number of studies on cancer survivorship in general have shown positive effects on social, existential, and psychological well-being [2]. Studies have also documented an altered sense of life course, effects on spirituality, and fear of future recurrence [2–5]. Studies on gynecologic cancer survivors have focused on the effects of the disease and treatment on sexuality, sexual self-schema, and sexual functioning, as well as effects on self perception, relationships, treatment-related menopause, and loss of fertility [3–7]. A few studies have explored the quality of life issues faced by longer term ovarian cancer survivors [8, 9] and the largest of these [8], which included 46% of women with active disease or receiving treatment, found their quality of life to be “moderately high.” This survey was designed to learn more about the lives of ovarian cancer survivors not on treatment and without known active disease for at least 2 years and determine their current physical and psychological health, functional ability, pain and discomfort, fatigue, body image, sexual function and satisfaction, feeling about the loss of reproductive potential, and the overall effect of ovarian cancer and its treatment on their relationships and life in general.
Objectives. This survey was designed to learn more about the physical health and quality of life of ovarian cancer survivors without known active disease and not on treatment. Methods. Women with ovarian cancer without evidence of active disease, and not on treatment for at least 2 years, were recruited in Canada and the United States from university cancer clinics, community ovarian support groups, and a cancer survivor network newsletter and asked to complete an anonymous mailback survey on their physical, psychological, social, and spiritual well-being. Results. Two-hundred (67.5%) women responded. Their mean age was 55.3 years, 72.5% had children, and they had been diagnosed with ovarian cancer a mean of 7.2 years previously. Eightynine percent regarded their health as good or excellent, but 53.5% had current pain or discomfort. They reported better mental health and equivalent energy levels to the general population. Although 57% reported that their sex lives had been negatively affected by cancer and its treatment, their overall sense of loss relating to sexual functioning was moderate to low. However, women under age 55 years reported a greater sense of loss about sexual function and fertility (P ⴝ 0.001). Most women reported that their ovarian cancer experience had changed their views on life and relationships in an overwhelmingly positive way. Conclusion. Most ovarian cancer survivors, despite some symptoms, enjoyed good physical, psychological, social, and spiritual health. Specific concerns emerged about sexuality which should be addressed in patient education. Having survived a life-threatening illness, ovarian cancer survivors appear to have put other life difficulties into perspective, altered their priorities, and felt enriched by the experience. In general, these women showed impressive and inspiring resilience and reported good physical health and energy, excellent psychological health, and feelings of greater pleasure in life and personal relationships. © 2001 Academic Press Key Words: quality of life; ovarian cancer survivors; psychological adaptation.
METHODS
Ovarian cancer is often fatal, but more effective treatment has increased the number of women who survive without recurrence for 2 years or longer [1]. Over the past decade, an
Women who survived ovarian cancer without evidence of active disease or recurrence and not on treatment for 2 or more years were recruited in Canada and the United States from two university hospital ovarian cancer clinics and six community ovarian cancer support groups, including an ovarian cancer survivor network newsletter named “CONVERSATIONS! The International Newsletter for Those Fighting Ovarian Cancer.” Consenting women were given a survey questionnaire and asked to return it anonymously in a stamped preaddressed envelope. Our questionnaire included questions about demographics, disease characteristics and treatments, current health and function, current pain and discomfort, mental health, fatigue, body image, reproductive capacity, sexual function, and overall effects and impact on life. Standardized, reliable, and valid questionnaires were used for mental health (the 5-item Mental Health Inventory of the Medical Outcomes Study) [10]
1 To whom correspondence and reprint requests should be addressed at University Health Network, 657 University Avenue, ML-2-004, Toronto, ON, M5G 2N2. Fax: (416) 340-3846. E-mail: [email protected].
537
0090-8258/01 $35.00 Copyright © 2001 by Academic Press All rights of reproduction in any form reserved.
538
STEWART ET AL.
and fatigue (Fatigue Rating Scale) [11]. Modified versions of the Quality of Life Questionnaire [12] and the Quality of Life Cancer Survivors [13] and questions from physical, psychological, social, and spiritual domains described in a conceptual framework for cancer survivorship [12, 14, 15] were also incorporated. The data were entered and analyzed using the Statistical Package for the Social Sciences. The project was approved by the Research Ethics Board of University Health Network. RESULTS Demographics Two-hundred ovarian cancer survivors, who had been at least 2 years without treatment or evidence of active disease or recurrence, completed the questionnaire (response rate 67.8%). The vast majority (87%) of the women were Caucasian; their mean age was 55.3 ⫾ 12.2 years (range 21 to 87); 68.5% were married and 72.5% had children. Fifty-seven percent of women were living with their husband or partner, 21% with other family, and 21% alone. In general, the women were well educated, with 29% having postgraduate university education, 24% community college or university, 23.5% some community college or university, and 23.5% having completed high school or less. Most women (52.5%) were employed outside the home, but 35.5% were mainly homemakers and 30.5% were retired (more than one answer possible). Only 5% were currently on disability pension or not working because they were still recovering from ovarian cancer. Disease and Treatment The women had been diagnosed with ovarian cancer a mean of 7.2 ⫾ 4.9 (range 2 to 30) years previously, with 30.5% being diagnosed between 2 and 5 years ago, 48% between 5 and 10 years ago, and 21.5% over 10 years ago. Ninety-eight percent of the women had undergone hysterectomy and oophorectomy; 84% also received chemotherapy and 22% also had radiation therapy. Current Health and Function Eighty-nine percent of women regarded their current health as good to excellent and only 10.5% of the women felt that they had fair to poor health compared to other women their age. With respect to menopause, 27.0% of women reported natural menopause, 15.5% surgical menopause unrelated to cancer treatment, and 57.5% menopause resulting from cancer treatment. Twenty-two percent reported menopausal symptoms and conditions of aging (hot flashes, ischemic heart disease, osteoporosis, and fractures) in the past year. Of the 84% of women who had chemotherapy, 44.5% reported that they could not think as clearly and 52% reported that their memory had become worse since chemotherapy, and this finding was not related to age or menopausal status. Most women (96.5%) did
not need any help with their everyday activities, such as eating, bathing, and dressing. Pain and Discomfort Slightly more than half (53.5%) of the women reported current physical pain or discomfort, which they attributed to their previous ovarian cancer or its treatment. The pain was predominantly in the bowel, pelvis, bladder, or groin. Age and education did not affect pain and discomfort ratings. On specific inquiry, 34.1% of women who had radiation therapy reported currently painful intercourse and discomfort with bowel motions. The severity and effect of the pain and discomfort that women attributed to ovarian cancer or its treatment were rated on a 10-point scale from 0 (none) to 10 (severe). Of women who had current pain, 46.4% rated the pain severity as mild (3 or less), 32.4% as moderate (4 to 6), and 21.1% as severe (7 to 10) (median ⫽ 4). The effect of cancer pain or discomfort on their lives was reported as low (3 or less) by 54.3%, moderate (4 to 6) by 24.3%, and high (7 to 10) by 21.4% of women (median ⫽ 3). Mental Health Mental health was rated on the 5-item Mental Health Inventory (MHI-5). Most women reported feeling “calm and peaceful” or “happy” most of the time and “being very nervous” or “down-hearted and blue” a little bit of the time. Almost all respondents reported that they never felt “so down in the dumps that nothing could cheer you up.” The mean MHI-5 score for ovarian cancer survivors was 23.7 ⫾ 4.2 compared to published population norm scores of 21.7 ⫾ 3.8, showing that ovarian cancer survivors reported better mental health (P ⫽ 0.0001) than the general population. Age, education, and time since diagnosis did not affect the MHI-5 scores. Fatigue The 13-item Fatigue Rating Scale (five-point scale) showed that most ovarian cancer survivors felt they had “quite a bit of energy” (median ⫽ 3). These results were not significantly different from those reported in the general population [11]. Body Image The five-point body image scale showed that the women mostly now had positive feelings about their face and hair (mean ⫽ 4) and neutral feelings about their general body appearance, abdomen, sexual organs, and weight (mean ⫽ 3). A direct logistic regression analysis was performed on perceptions of body image with the following predictors: age group, emotional health, health, education, and menopause. A test of the full model with all predictors against a constant-only model was statistically reliable (model: 2 ⫽ 21.56, P ⬍ 0.001), indicating that the predictors, as a set, reliably distinguish between those who have positive feelings about their bodies
539
AN OVARIAN CANCER SURVIVOR SURVEY
TABLE 1 Results of Logistic Regression Analysis Predicting Perceptions of Body Image Variable ratio
B
SE
Wald
df
P
Odds
CI
Age Emotional health Health Education Menopause status Model 2 Nagelkerke R 2
1.132 0.212 ⫺0.815 0.203 0.342 21.56 0.244
0.472 0.287 0.274 0.569 1.151
5.739 0.545 8.839 0.128 0.088
1 1 1 1 1
0.017 0.460 0.003 0.721 0.766
3.101 1.236 0.443 1.225 0.710
1.22–7.82 0.70–2.17 0.25–0.76 0.40–3.74 0.07–6.78
and those who do not. Twenty-four percent of the variance in body image is accounted for by this set of predictors. Prediction success was 71%. According to the Wald criterion (see Table 1), only two variables— being older (55 or above) and having better physical health—reliably predicted more positive perceptions of body image. Reproduction and Sexuality On a 10-point scale, 55.5% of women reported no sense of loss of reproductive potential and 19.5% (mostly women under age 55 years) reported a moderate to great sense of loss. A direct logistic regression analysis was performed on sense of loss of reproductive potential with the following predictors: age group, menopause status, marital status, emotional health, health status, and treatment type (chemotherapy or radiation). A test of the full model with all predictors against a constantonly model was statistically reliable (model: 2 ⫽ 60.21, P ⬍ 0.001), indicating that the predictors, as a set, reliably distinguish between those who have a great sense of loss and those who do not. Forty-seven percent of the variance in sense of loss is accounted for by this set of predictors. Prediction success was 87%. According to the Wald criterion (see Table 2), only three variables (being under 55 years of age, being premenopausal, and having poorer emotional health) reliably predicted a higher sense of loss of reproductive potential. Fifty-seven percent of women reported that their sex lives had been negatively affected by cancer and its treatment. A direct logistic regression analysis was performed on the perceived ef-
fects of cancer on sexuality with the following predictors: age group, health, body image, marital status, menopause status, emotional health, and treatment type (chemotherapy or radiation). A test of the full model with all predictors against a constant-only model was statistically reliable (model: 2 ⫽ 13.781, P ⬍ 0.001), indicating that the predictors, as a set, reliably distinguish between those who feel that their sexuality has been affected by their cancer versus those who do not. Twenty-four percent of the variance in effect on sexuality was accounted for by this set of predictors. Prediction success was 67%. According to the Wald criterion (see Table 3), only two variables (being younger than 55 and being married or in a stable relationship) reliably predicted effects of cancer on sexuality. This had resulted in a little (under 3) effect for 13.4% of these women, a moderate effect (4 to 6) for 21.1%, and a high (7 to 10) effect for 65.5% (median ⫽ 8) of these women. Women treated with radiation therapy reported more frequent or severe sexual symptoms (P ⫽ 0.01). Before cancer treatment, 64.4% of women felt that their sexual lives were above average or excellent but after treatment only 24.7% felt this way. Before cancer treatment 35.6% of women felt that their sex lives were adequate to poor, but after treatment 75.3% felt this way. However, in reply to a question to best describe their sense of loss about their sexuality, 33% of women reported no loss, 17% a little loss (3 or less), 19% moderate loss (4 to 6), and 25.5% great loss (7 to 10) (median ⫽ 3). Women under age 55 were more likely to report a greater sense of loss about their sexuality (P ⫽ 0.0001) than older women. When asked to rate on a five-point scale “how much specific sexual issues have been a source of upset or worry
TABLE 2 Results of Logistic Regression Analysis Predicting Feelings of Loss about Losing the Ability to Have Children Variable ratio
B
SE
Wald
df
P
Odds
CI
Age Menopause status Marital status Emotional health Health Chemo Radiation Model 2 Nagelkerke R 2
⫺3.329 ⫺2.749 ⫺0.774 ⫺1.083 0.415 0.155 ⫺0.644 60.21 0.472
0.673 1.277 0.549 0.333 0.265 0.265 0.527
24.44 4.633 1.989 10.56 2.457 2.46 0.086
1 1 1 1 1 1 1
0.000 0.031 0.158 0.001 0.177 0.769 0.301
0.036 0.064 0.461 0.338 1.515 1.167 0.525
0.01–0.13 0.05–0.78 0.16–1.35 0.18–0.65 0.90–2.55 0.41–3.28 0.16–1.79
540
STEWART ET AL.
TABLE 3 Results of Logistic Regression Analysis Predicting Perceived Effects of Cancer on Sexual Life Variable ratio
B
SE
Wald
df
P
Odds
CI
Age Health Perception of body image Marital status Menopause status Emotional health Chemo Radiation Model 2 Nagelkerke R 2
1.100 ⫺0.100 0.734 ⫺1.442 1.988 0.268 0.909 0.316 13.78 0.244
0.508 0.272 0.523 0.574 1.029 0.290 0.703 0.592
4.692 0.134 1.972 6.314 3.735 0.853 1.675 0.284
1 1 1 1 1 1 1 1
0.030 0.714 0.160 0.012 0.053 0.356 0.196 0.594
3.003 0.905 2.083 0.236 7.299 1.307 2.482 1.371
1.11–8.12 0.53–1.54 0.75–5.80 0.08–0.73 0.97–54.79 0.74–2.30 0.63–9.83 0.43–4.38
since you found out you had cancer,” 48% of women feared that cancer treatment would make sex painful or impossible, and 11% of women feared that cancer was caused by something connected to their or their partner’s sex life (Table 4). Effects and Impact on Life When asked to describe (on a 10-point scale) the positive or negative effects that having had ovarian cancer now have on various aspects of their lives, the median rating showed an extremely positive effect on their perspective on life (9), their relationships with their children (8), partner (7), other people (7), and role performance (7). Median ratings were in the neutral or no effect range on mood (6), finances (5), occupation (5), social life (5), physical well-being (5), and quality of sex life (4). No medians on any item fell into the negative range (1–3). When asked to estimate the overall impact of ovarian cancer on their lives compared to other life events on a 10-point scale, 6% reported a low (3 or less), 16.5% a moderate (4 to 6), and 75% a high (7 to 10) impact (median ⫽ 8). Most women reported that having ovarian cancer had changed their views on life overwhelmingly in a positive way (Table 5), although some negative feelings were also reported by a few survivors. TABLE 4 Concerns about Sexual Life and Ovarian Cancer since Diagnosis (N ⴝ 182) (%) Fear that cancer treatment will make sex painful or impossible Concern that cancer will negatively affect your sexual relationship Fear that you will be unable to reach orgasm after treatment Fear that cancer treatment will make you unattractive Fears about becoming infertile Fear that cancer was caused by something connected to your sex life Concern that cancer was caused by your partner’s sexual activity Concern that cancer was caused by your sexual activity Fear that sexual activity will make the cancer worse Fear that cancer could be contagious through sexual activity
96 (48.0) 86 (43.0) 80 (40.0) 77 (38.5) 27 (13.5) 22 (11.0) 21 (10.5) 18 (9.0) 10 (5.0) 5 (2.5)
Older women were more likely to report a feeling of having put cancer behind them (P ⫽ 0.004) and that laughter and humor have become more important (P ⫽ 0.05), while younger women were less confident about the future (P ⫽ 0.003) and reported a greater overall impact (P ⫽ 0.02). More educated women (completed college, university, or postgraduate education) and women who survived 5 years or more were more likely to report greater assertiveness (P ⫽ 0.005), the adoption of a more lighthearted perspective on life (P ⫽ 0.02), better focus on personal needs (P ⫽ 0.02), and that their lives have been enriched by cancer (P ⫽ 0.04). DISCUSSION These women had beaten the odds by surviving 2 years or longer without treatment, evidence of active disease, or recurrence of ovarian cancer. They were fortunate in other ways as well, as most had partners and children and over half had postsecondary
TABLE 5 Has Ovarian Cancer Changed Your Views on Life? (N ⴝ 200) (%) I want to be more involved with helping others My life has been enriched by my ovarian cancer experiences I appreciate other people more I feel strengthened by my cancer experiences I take pleasure in things of life that I never appreciated before Ovarian cancer is a challenge that I have overcome I have become better at taking charge of my own life Humor has become an important part of my life I am better able to focus on myself and my own needs I have adopted a more light-hearted perspective on life I have put cancer behind me—life goes on as normal I have become more assertive I now have bad dreams of cancer I am less confident about my future It gives me reason to withdraw from obligations I didn’t enjoy I live with uncertainty and am unable to make long-term plans Ovarian cancer is a relief—it has given me freedom in my life I see ovarian cancer as a weakness or punishment I have become more withdrawn from society or other people
145 (72.5) 137 (68.5) 135 (67.5) 133 (66.5) 132 (66.0) 129 (64.5) 121 (60.5) 115 (57.5) 109 (54.5) 104 (52.0) 101 (50.5) 98 (49.0) 87 (43.5) 45 (22.5) 24 (12.0) 18 (9.0) 16 (8.0) 15 (7.5) 9 (4.5)
AN OVARIAN CANCER SURVIVOR SURVEY
education and were employed outside the home. Probably the women in our study were not entirely typical of average women with ovarian cancer, as by virtue of their longer term survival they were, as described by one woman, “the lucky ones.” There may also have been a selection bias in women who chose to respond to a fairly lengthy survey questionnaire, which was limited to literate, English-speaking women who attended a university cancer treatment center or belonged to a community support group. It is known that support groups and, to a lesser extent, tertiary care cancer centers tend to attract well-educated, articulate, middleclass women [8]. This bias may be lessened by the fact that ovarian cancer is disproportionately a disease of educated middle and upper class women [16, 17]. Moreover, it is likely, although not possible to substantiate from our data, that these women were treated at an earlier stage of ovarian cancer or had less malignant tumors, such as germ cell tumors rather than epithelial ovarian cancers. Although these women had been diagnosed several years before, they continued to regard the overall impact of ovarian cancer on their lives to be very high. As a group, they enjoyed good to excellent physical health, and many of the symptoms they suffered were those of menopause and aging. However, they also suffered from some effects of cancer and its treatment, with more than half suffering from pelvic pain, bladder, and bowel problems. Although the majority of our women had either no discomfort or pain, or rated it as mild to moderate, over 20% of the women still suffered severe pain, which had a high impact on their lives. Nevertheless, most women remained very functional— only a tiny minority required any help with their activities of daily living and more than half continued to work for pay outside the home. Ovarian cancer survivors, despite physical scars, were generally satisfied with their body appearance, energy levels, and psychological well-being. Although reports of fatigue during active ovarian cancer treatment are common [9, 12, 18], the survivors in our study did not report more fatigue than population norms. Their mental health scores were better than those found in women during treatment for ovarian cancer [18] and statistically, but not necessarily clinically, better than those of the general population [10]. It may be that having survived a life-threatening illness, these women have put other life difficulties into perspective, altered their priorities, and thereby gained or retained better mental health. Cohen et al. have reported that cancer treatment may result in existential issues assuming greater importance, and the meaning of life and the value of each day may supercede other, now trivial, aspects of daily living [19]. As psychological well-being is more highly correlated with overall quality of life than physical, social, or spiritual well-being [8], it may partially explain why our survivors felt that the cancer experience had a positive effect on their lives. Ovarian cancer and its treatment clearly had a detrimental effect on 57% of women’s sex lives, an even higher percentage than the 30% reported for all gynecologic cancer patients [3] or the 23% reported for women treated for ovarian dysgerminoma
541
[20]. Not surprising, being under age 55 and married or in a stable relationship were predictive of reporting a more detrimental effect on sexuality. Sexual problems may have also been caused in some women from menopause without estrogen replacement, as well as from cancer treatment itself. Interestingly, the overall sense of loss relating to sexual functioning for most survivors was moderate to low, suggesting that they had changed or downgraded the meaning of sexuality after their illness. Women who had been treated with radiation developed more sexual problems, in keeping with a previous study on cervical cancer survivors [21]. Although a diminished sex life was reported by approximately three-quarters of survivors, nearly a quarter still described their current sex lives as excellent to above average, reinforcing the view that sexual satisfaction is determined more by attitude and relationship, rather than gonadal function. Other investigators have also found a high satisfaction with general functioning in survivors of gynecologic cancer, leading to the suggestion that intimacy is the primary element of sexual satisfaction [22]. Auchincloss reports that many gynecologic cancer survivors report feeling “more intensely alive” [7]. However, survivors reported some interesting concerns about sexuality after their diagnosis. In addition to concerns about actual sexual functioning after cancer treatment, over a third of the women feared that cancer treatment would make them sexually unattractive. Most surprising was the fear by over 10% of women that ovarian cancer had been caused by something connected to their own or their partners’ sexual activity. Moreover, 5% of survivors feared that sexual activity could make ovarian cancer worse and 2.5% felt that ovarian cancer could be contagious through sexual activity. It is clear that patient education should not only include discussion of sexual changes following ovarian cancer treatment but also address specific concerns about the etiology or aggravation of ovarian cancer through sexual activity. Concerns about loss of reproductive potential were reported by a small number of women who were under 55, premenopausal at the time of diagnosis, and who reported poorer mental health. Not surprisingly, ovarian cancer had a much greater impact on reproductive concerns for younger women who may have wanted one or more children before cancer diagnosis, and some of them still expressed strong feelings about the loss of their fertility. These feelings may have been reflected in their reports of poorer mental health. It is impressive that the vast majority of ovarian cancer patients, especially those with postsecondary education, felt that their illness had had an extremely positive effect on their lives, especially with respect to their relationships with family, friends, and others and their role performance as mother, partner, working woman, and caregiver. While many of the findings have been described in cancer survivors in general [4 –7], they were even more strongly expressed by our ovarian cancer survivors, perhaps because of the more serious prognosis of this disease. As others have noted [5], human beings are enormously adaptable and cancer survivorship has both positive and negative aspects. Although over half of all women in
542
STEWART ET AL.
our study had some symptoms, they saw the disease impact in positive terms and felt that their lives had been enriched by the experience. Their ability to adapt and transcend the challenges of cancer was impressive and inspiring! Although women did not use the words “existential” or “spiritual” in their descriptions, if one considers these terms to include the purpose and meaning of life, hopefulness, and transcendence, it appears that these aspects of the survivorship experience were important to many women. Our results suggest a number of issues that need further attention. In view of the widespread public belief that a positive fighting attitude is helpful in surviving cancer, it would be interesting to know whether the women in our study initially had such a positive outlook or whether it resulted from their good outcomes. The psychological predictors of resilient coping with cancer may be useful in designing better personal support programs for patients. The identification of social problems related to diagnosis and treatment, including those which are most burdensome and stigmatizing, could be helpful in building better systemic supports for cancer patients and their families. The claims of impaired thinking ability and memory following chemotherapy have been reported by other investigators [23] and deserve further objective study, with before and after psychometric testing to differentiate the effects of chemotherapy from those of stress, estrogen levels, or aging. As the number of cancer survivors increase, these and related issues will assume greater importance [24, 25]. CONCLUSIONS It may be helpful for women newly diagnosed with ovarian cancer to know that, although they will have some pain and discomfort during and following treatment, increasing numbers of women survive this disease, regard their health as good and excellent, and continue to lead productive, energetic, happy lives. Specific education of ovarian cancer patients should include information about life during and after treatment, including specific information about sexuality and its lack of association with the etiology or exacerbation of ovarian cancer [26]. Younger (premenopausal) women may benefit from discussion and support regarding their feelings about sexuality and loss of reproductive potential. Most importantly, women may be comforted by learning that most ovarian cancer survivors report an enriched life that results in them feeling strengthened and taking pleasure in things they had not previously appreciated. As one survivor poignantly quoted, “What doesn’t kill you makes you stronger.”
3. Andersen B, Anderson B, deProsse C. Controlled prospective longitudinal study of women with cancer: I. Sexual functioning outcomes. J Consult Clin Psychol 1989;75:683–91. 4. Andersen BL. Surviving cancer. Cancer 1994;74:1484 –95. 5. Andersen BL, Anderson B, deProsse C. Controlled prospective longitudinal study of women with cancer: II. Psychological outcomes. J Consult Clin Psychol 1989;57:692–7. 6. Anderson B, Lutgendorf S. Quality of life in gynecologic cancer survivors. CA Cancer J Clin 1997;47:218 –25. 7. Auchincloss SS. After treatment: psychosocial issues in gynecologic cancer survivorship. Cancer 1995;76(Suppl 10):2117–24. 8. Ersek M, Ferrell BR, Dow KH, Melancon CN. Quality of life in women with ovarian cancer. Western J Nurs Res 1997;19:334 –50. 9. Guidozzi F. Living with ovarian cancer. Gynecol Oncol 1993;50:202–7. 10. Ware JE (jr), Johnson SA, Davies-Avery A. Conceptualization and measurement of health for adults in the health insurance study, Vol. III, Mental health, Santa Monica, CA: Rand, 1979. Publication No. R-1987/3 HEW. 11. Schwartz JE, Krupp LB. The measurement of fatigue: a new instrument. J Psychosom Res 1993;37:753– 62. 12. Farrell BC, Dow K, Grant M. Measurement of the quality of life in cancer survivors. Qual Life Res 1995;4:523–31. 13. Cella D. Quality of life: concepts and definition. J Pain Symptom Management 1994;9:186 –92. 14. Padilla GV, Ferrell BR, Grant M, Rhiner M. Defining the content domain of quality of life for cancer patients with pain. Cancer Nurs 1990;13:108 –15. 15. Ferrans CE. Development of a quality of life index for patients with cancer. Oncol Nurs Forum 1990;17(3 Suppl):15–9. 16. Averette HE, Janicek MF, Menck HR. The national cancer database report on ovarian cancer. Cancer 1995;76:1096 –103. 17. Wingo PA, Tong T, Bolden S. Cancer statistics. CA Cancer J Clin 1995;45:8 –30. 18. Kornblith AB, Thaler HT, Wong G, Vlamis V, Lepore JM, Loseth DB, Hakes T, Hoskins WJ, Portenoy RK. Quality of life in women with ovarian cancer. Gynecol Oncol 1995;59:231– 42. 19. Cohen SR, Mount BM, Thomas JJ, et al. Existential well-being is an important determinant of quality of life: evidence from the McGill Quality of Life Questionnaire. Cancer 1996;77:576 – 86. 20. Mitchell MF, Gershenson DM, Soeters, R, Eifel P, Delclos L, Wharton JT. The long-term effects of radiation therapy on patients with ovarian dysgerminoma. Cancer 1991;67(4):1084 –90. 21. Schover LR, Fife M, Gershenson D. Sexual dysfunction and treatment for early stage cervical cancer. Cancer 1989;63(1):204 –12. 22. Wiejmar S WCM, Van den Weil HBM, Bouma J, Janssens J, Littlewood J. Psychosexual functioning after treatment of cancer of the vulva: a longitudinal study. Cancer 1990;66:402–7. 23. Brezden CB, Phillips KA, Abdolell M, Bunston T, Tannock IF. Cognitive function in breast cancer patients receiving adjuvant chemotherapy 2000; 18:2695–701. 24. McCartney C, Larson D. Quality of life in patients with gynecologic cancer. Cancer 1987;60:2129 –36.
REFERENCES
25. Stewart DE, Duff S, Wong F, Melancon C, Cheung AM. The views of ovarian cancer survivors on its cause, prevention and recurrence. Medscape Women’s Health. 2001;6 (http://www.medscape.com).
1. Young R. Ovarian cancer. CA Cancer J Clin 1995;45:69 –70. 2. Ferrell BR, Dow KH, Leigh S, Ly S, Gulasekaram P. Quality of life in long term cancer survivors. Oncol Nurs Forum 1995;22:915–22.
26. Stewart DE, Wong F, Cheung AM, Dancey J, Meana M, Cameron J, McAndrews MP, Bunston T, Murphy J, Rosen B. Information needs and decisional preferences among women with ovarian cancer. Gynecol Oncol 2000;77:357– 61.
“What Doesn’t Kill You Makes You Stronger”: An Ovarian Cancer Survivor Survey D. E. Stewart, M.D.,* ,1 F. Wong, M.B.B.S.,* S. Duff, B.Sc.,* C. H. Melancon, M.N.,† and A. M. Cheung, M.D., FRCPC* *University Health Network, University of Toronto, Toronto, Ontario M5G 2N2, Canada; and †CONVERSATIONS! The International Newsletter For Those Fighting Ovarian Cancer Received January 17, 2001
increasing number of studies on cancer survivorship in general have shown positive effects on social, existential, and psychological well-being [2]. Studies have also documented an altered sense of life course, effects on spirituality, and fear of future recurrence [2–5]. Studies on gynecologic cancer survivors have focused on the effects of the disease and treatment on sexuality, sexual self-schema, and sexual functioning, as well as effects on self perception, relationships, treatment-related menopause, and loss of fertility [3–7]. A few studies have explored the quality of life issues faced by longer term ovarian cancer survivors [8, 9] and the largest of these [8], which included 46% of women with active disease or receiving treatment, found their quality of life to be “moderately high.” This survey was designed to learn more about the lives of ovarian cancer survivors not on treatment and without known active disease for at least 2 years and determine their current physical and psychological health, functional ability, pain and discomfort, fatigue, body image, sexual function and satisfaction, feeling about the loss of reproductive potential, and the overall effect of ovarian cancer and its treatment on their relationships and life in general.
Objectives. This survey was designed to learn more about the physical health and quality of life of ovarian cancer survivors without known active disease and not on treatment. Methods. Women with ovarian cancer without evidence of active disease, and not on treatment for at least 2 years, were recruited in Canada and the United States from university cancer clinics, community ovarian support groups, and a cancer survivor network newsletter and asked to complete an anonymous mailback survey on their physical, psychological, social, and spiritual well-being. Results. Two-hundred (67.5%) women responded. Their mean age was 55.3 years, 72.5% had children, and they had been diagnosed with ovarian cancer a mean of 7.2 years previously. Eightynine percent regarded their health as good or excellent, but 53.5% had current pain or discomfort. They reported better mental health and equivalent energy levels to the general population. Although 57% reported that their sex lives had been negatively affected by cancer and its treatment, their overall sense of loss relating to sexual functioning was moderate to low. However, women under age 55 years reported a greater sense of loss about sexual function and fertility (P ⴝ 0.001). Most women reported that their ovarian cancer experience had changed their views on life and relationships in an overwhelmingly positive way. Conclusion. Most ovarian cancer survivors, despite some symptoms, enjoyed good physical, psychological, social, and spiritual health. Specific concerns emerged about sexuality which should be addressed in patient education. Having survived a life-threatening illness, ovarian cancer survivors appear to have put other life difficulties into perspective, altered their priorities, and felt enriched by the experience. In general, these women showed impressive and inspiring resilience and reported good physical health and energy, excellent psychological health, and feelings of greater pleasure in life and personal relationships. © 2001 Academic Press Key Words: quality of life; ovarian cancer survivors; psychological adaptation.
METHODS
Ovarian cancer is often fatal, but more effective treatment has increased the number of women who survive without recurrence for 2 years or longer [1]. Over the past decade, an
Women who survived ovarian cancer without evidence of active disease or recurrence and not on treatment for 2 or more years were recruited in Canada and the United States from two university hospital ovarian cancer clinics and six community ovarian cancer support groups, including an ovarian cancer survivor network newsletter named “CONVERSATIONS! The International Newsletter for Those Fighting Ovarian Cancer.” Consenting women were given a survey questionnaire and asked to return it anonymously in a stamped preaddressed envelope. Our questionnaire included questions about demographics, disease characteristics and treatments, current health and function, current pain and discomfort, mental health, fatigue, body image, reproductive capacity, sexual function, and overall effects and impact on life. Standardized, reliable, and valid questionnaires were used for mental health (the 5-item Mental Health Inventory of the Medical Outcomes Study) [10]
1 To whom correspondence and reprint requests should be addressed at University Health Network, 657 University Avenue, ML-2-004, Toronto, ON, M5G 2N2. Fax: (416) 340-3846. E-mail: [email protected].
537
0090-8258/01 $35.00 Copyright © 2001 by Academic Press All rights of reproduction in any form reserved.
538
STEWART ET AL.
and fatigue (Fatigue Rating Scale) [11]. Modified versions of the Quality of Life Questionnaire [12] and the Quality of Life Cancer Survivors [13] and questions from physical, psychological, social, and spiritual domains described in a conceptual framework for cancer survivorship [12, 14, 15] were also incorporated. The data were entered and analyzed using the Statistical Package for the Social Sciences. The project was approved by the Research Ethics Board of University Health Network. RESULTS Demographics Two-hundred ovarian cancer survivors, who had been at least 2 years without treatment or evidence of active disease or recurrence, completed the questionnaire (response rate 67.8%). The vast majority (87%) of the women were Caucasian; their mean age was 55.3 ⫾ 12.2 years (range 21 to 87); 68.5% were married and 72.5% had children. Fifty-seven percent of women were living with their husband or partner, 21% with other family, and 21% alone. In general, the women were well educated, with 29% having postgraduate university education, 24% community college or university, 23.5% some community college or university, and 23.5% having completed high school or less. Most women (52.5%) were employed outside the home, but 35.5% were mainly homemakers and 30.5% were retired (more than one answer possible). Only 5% were currently on disability pension or not working because they were still recovering from ovarian cancer. Disease and Treatment The women had been diagnosed with ovarian cancer a mean of 7.2 ⫾ 4.9 (range 2 to 30) years previously, with 30.5% being diagnosed between 2 and 5 years ago, 48% between 5 and 10 years ago, and 21.5% over 10 years ago. Ninety-eight percent of the women had undergone hysterectomy and oophorectomy; 84% also received chemotherapy and 22% also had radiation therapy. Current Health and Function Eighty-nine percent of women regarded their current health as good to excellent and only 10.5% of the women felt that they had fair to poor health compared to other women their age. With respect to menopause, 27.0% of women reported natural menopause, 15.5% surgical menopause unrelated to cancer treatment, and 57.5% menopause resulting from cancer treatment. Twenty-two percent reported menopausal symptoms and conditions of aging (hot flashes, ischemic heart disease, osteoporosis, and fractures) in the past year. Of the 84% of women who had chemotherapy, 44.5% reported that they could not think as clearly and 52% reported that their memory had become worse since chemotherapy, and this finding was not related to age or menopausal status. Most women (96.5%) did
not need any help with their everyday activities, such as eating, bathing, and dressing. Pain and Discomfort Slightly more than half (53.5%) of the women reported current physical pain or discomfort, which they attributed to their previous ovarian cancer or its treatment. The pain was predominantly in the bowel, pelvis, bladder, or groin. Age and education did not affect pain and discomfort ratings. On specific inquiry, 34.1% of women who had radiation therapy reported currently painful intercourse and discomfort with bowel motions. The severity and effect of the pain and discomfort that women attributed to ovarian cancer or its treatment were rated on a 10-point scale from 0 (none) to 10 (severe). Of women who had current pain, 46.4% rated the pain severity as mild (3 or less), 32.4% as moderate (4 to 6), and 21.1% as severe (7 to 10) (median ⫽ 4). The effect of cancer pain or discomfort on their lives was reported as low (3 or less) by 54.3%, moderate (4 to 6) by 24.3%, and high (7 to 10) by 21.4% of women (median ⫽ 3). Mental Health Mental health was rated on the 5-item Mental Health Inventory (MHI-5). Most women reported feeling “calm and peaceful” or “happy” most of the time and “being very nervous” or “down-hearted and blue” a little bit of the time. Almost all respondents reported that they never felt “so down in the dumps that nothing could cheer you up.” The mean MHI-5 score for ovarian cancer survivors was 23.7 ⫾ 4.2 compared to published population norm scores of 21.7 ⫾ 3.8, showing that ovarian cancer survivors reported better mental health (P ⫽ 0.0001) than the general population. Age, education, and time since diagnosis did not affect the MHI-5 scores. Fatigue The 13-item Fatigue Rating Scale (five-point scale) showed that most ovarian cancer survivors felt they had “quite a bit of energy” (median ⫽ 3). These results were not significantly different from those reported in the general population [11]. Body Image The five-point body image scale showed that the women mostly now had positive feelings about their face and hair (mean ⫽ 4) and neutral feelings about their general body appearance, abdomen, sexual organs, and weight (mean ⫽ 3). A direct logistic regression analysis was performed on perceptions of body image with the following predictors: age group, emotional health, health, education, and menopause. A test of the full model with all predictors against a constant-only model was statistically reliable (model: 2 ⫽ 21.56, P ⬍ 0.001), indicating that the predictors, as a set, reliably distinguish between those who have positive feelings about their bodies
539
AN OVARIAN CANCER SURVIVOR SURVEY
TABLE 1 Results of Logistic Regression Analysis Predicting Perceptions of Body Image Variable ratio
B
SE
Wald
df
P
Odds
CI
Age Emotional health Health Education Menopause status Model 2 Nagelkerke R 2
1.132 0.212 ⫺0.815 0.203 0.342 21.56 0.244
0.472 0.287 0.274 0.569 1.151
5.739 0.545 8.839 0.128 0.088
1 1 1 1 1
0.017 0.460 0.003 0.721 0.766
3.101 1.236 0.443 1.225 0.710
1.22–7.82 0.70–2.17 0.25–0.76 0.40–3.74 0.07–6.78
and those who do not. Twenty-four percent of the variance in body image is accounted for by this set of predictors. Prediction success was 71%. According to the Wald criterion (see Table 1), only two variables— being older (55 or above) and having better physical health—reliably predicted more positive perceptions of body image. Reproduction and Sexuality On a 10-point scale, 55.5% of women reported no sense of loss of reproductive potential and 19.5% (mostly women under age 55 years) reported a moderate to great sense of loss. A direct logistic regression analysis was performed on sense of loss of reproductive potential with the following predictors: age group, menopause status, marital status, emotional health, health status, and treatment type (chemotherapy or radiation). A test of the full model with all predictors against a constantonly model was statistically reliable (model: 2 ⫽ 60.21, P ⬍ 0.001), indicating that the predictors, as a set, reliably distinguish between those who have a great sense of loss and those who do not. Forty-seven percent of the variance in sense of loss is accounted for by this set of predictors. Prediction success was 87%. According to the Wald criterion (see Table 2), only three variables (being under 55 years of age, being premenopausal, and having poorer emotional health) reliably predicted a higher sense of loss of reproductive potential. Fifty-seven percent of women reported that their sex lives had been negatively affected by cancer and its treatment. A direct logistic regression analysis was performed on the perceived ef-
fects of cancer on sexuality with the following predictors: age group, health, body image, marital status, menopause status, emotional health, and treatment type (chemotherapy or radiation). A test of the full model with all predictors against a constant-only model was statistically reliable (model: 2 ⫽ 13.781, P ⬍ 0.001), indicating that the predictors, as a set, reliably distinguish between those who feel that their sexuality has been affected by their cancer versus those who do not. Twenty-four percent of the variance in effect on sexuality was accounted for by this set of predictors. Prediction success was 67%. According to the Wald criterion (see Table 3), only two variables (being younger than 55 and being married or in a stable relationship) reliably predicted effects of cancer on sexuality. This had resulted in a little (under 3) effect for 13.4% of these women, a moderate effect (4 to 6) for 21.1%, and a high (7 to 10) effect for 65.5% (median ⫽ 8) of these women. Women treated with radiation therapy reported more frequent or severe sexual symptoms (P ⫽ 0.01). Before cancer treatment, 64.4% of women felt that their sexual lives were above average or excellent but after treatment only 24.7% felt this way. Before cancer treatment 35.6% of women felt that their sex lives were adequate to poor, but after treatment 75.3% felt this way. However, in reply to a question to best describe their sense of loss about their sexuality, 33% of women reported no loss, 17% a little loss (3 or less), 19% moderate loss (4 to 6), and 25.5% great loss (7 to 10) (median ⫽ 3). Women under age 55 were more likely to report a greater sense of loss about their sexuality (P ⫽ 0.0001) than older women. When asked to rate on a five-point scale “how much specific sexual issues have been a source of upset or worry
TABLE 2 Results of Logistic Regression Analysis Predicting Feelings of Loss about Losing the Ability to Have Children Variable ratio
B
SE
Wald
df
P
Odds
CI
Age Menopause status Marital status Emotional health Health Chemo Radiation Model 2 Nagelkerke R 2
⫺3.329 ⫺2.749 ⫺0.774 ⫺1.083 0.415 0.155 ⫺0.644 60.21 0.472
0.673 1.277 0.549 0.333 0.265 0.265 0.527
24.44 4.633 1.989 10.56 2.457 2.46 0.086
1 1 1 1 1 1 1
0.000 0.031 0.158 0.001 0.177 0.769 0.301
0.036 0.064 0.461 0.338 1.515 1.167 0.525
0.01–0.13 0.05–0.78 0.16–1.35 0.18–0.65 0.90–2.55 0.41–3.28 0.16–1.79
540
STEWART ET AL.
TABLE 3 Results of Logistic Regression Analysis Predicting Perceived Effects of Cancer on Sexual Life Variable ratio
B
SE
Wald
df
P
Odds
CI
Age Health Perception of body image Marital status Menopause status Emotional health Chemo Radiation Model 2 Nagelkerke R 2
1.100 ⫺0.100 0.734 ⫺1.442 1.988 0.268 0.909 0.316 13.78 0.244
0.508 0.272 0.523 0.574 1.029 0.290 0.703 0.592
4.692 0.134 1.972 6.314 3.735 0.853 1.675 0.284
1 1 1 1 1 1 1 1
0.030 0.714 0.160 0.012 0.053 0.356 0.196 0.594
3.003 0.905 2.083 0.236 7.299 1.307 2.482 1.371
1.11–8.12 0.53–1.54 0.75–5.80 0.08–0.73 0.97–54.79 0.74–2.30 0.63–9.83 0.43–4.38
since you found out you had cancer,” 48% of women feared that cancer treatment would make sex painful or impossible, and 11% of women feared that cancer was caused by something connected to their or their partner’s sex life (Table 4). Effects and Impact on Life When asked to describe (on a 10-point scale) the positive or negative effects that having had ovarian cancer now have on various aspects of their lives, the median rating showed an extremely positive effect on their perspective on life (9), their relationships with their children (8), partner (7), other people (7), and role performance (7). Median ratings were in the neutral or no effect range on mood (6), finances (5), occupation (5), social life (5), physical well-being (5), and quality of sex life (4). No medians on any item fell into the negative range (1–3). When asked to estimate the overall impact of ovarian cancer on their lives compared to other life events on a 10-point scale, 6% reported a low (3 or less), 16.5% a moderate (4 to 6), and 75% a high (7 to 10) impact (median ⫽ 8). Most women reported that having ovarian cancer had changed their views on life overwhelmingly in a positive way (Table 5), although some negative feelings were also reported by a few survivors. TABLE 4 Concerns about Sexual Life and Ovarian Cancer since Diagnosis (N ⴝ 182) (%) Fear that cancer treatment will make sex painful or impossible Concern that cancer will negatively affect your sexual relationship Fear that you will be unable to reach orgasm after treatment Fear that cancer treatment will make you unattractive Fears about becoming infertile Fear that cancer was caused by something connected to your sex life Concern that cancer was caused by your partner’s sexual activity Concern that cancer was caused by your sexual activity Fear that sexual activity will make the cancer worse Fear that cancer could be contagious through sexual activity
96 (48.0) 86 (43.0) 80 (40.0) 77 (38.5) 27 (13.5) 22 (11.0) 21 (10.5) 18 (9.0) 10 (5.0) 5 (2.5)
Older women were more likely to report a feeling of having put cancer behind them (P ⫽ 0.004) and that laughter and humor have become more important (P ⫽ 0.05), while younger women were less confident about the future (P ⫽ 0.003) and reported a greater overall impact (P ⫽ 0.02). More educated women (completed college, university, or postgraduate education) and women who survived 5 years or more were more likely to report greater assertiveness (P ⫽ 0.005), the adoption of a more lighthearted perspective on life (P ⫽ 0.02), better focus on personal needs (P ⫽ 0.02), and that their lives have been enriched by cancer (P ⫽ 0.04). DISCUSSION These women had beaten the odds by surviving 2 years or longer without treatment, evidence of active disease, or recurrence of ovarian cancer. They were fortunate in other ways as well, as most had partners and children and over half had postsecondary
TABLE 5 Has Ovarian Cancer Changed Your Views on Life? (N ⴝ 200) (%) I want to be more involved with helping others My life has been enriched by my ovarian cancer experiences I appreciate other people more I feel strengthened by my cancer experiences I take pleasure in things of life that I never appreciated before Ovarian cancer is a challenge that I have overcome I have become better at taking charge of my own life Humor has become an important part of my life I am better able to focus on myself and my own needs I have adopted a more light-hearted perspective on life I have put cancer behind me—life goes on as normal I have become more assertive I now have bad dreams of cancer I am less confident about my future It gives me reason to withdraw from obligations I didn’t enjoy I live with uncertainty and am unable to make long-term plans Ovarian cancer is a relief—it has given me freedom in my life I see ovarian cancer as a weakness or punishment I have become more withdrawn from society or other people
145 (72.5) 137 (68.5) 135 (67.5) 133 (66.5) 132 (66.0) 129 (64.5) 121 (60.5) 115 (57.5) 109 (54.5) 104 (52.0) 101 (50.5) 98 (49.0) 87 (43.5) 45 (22.5) 24 (12.0) 18 (9.0) 16 (8.0) 15 (7.5) 9 (4.5)
AN OVARIAN CANCER SURVIVOR SURVEY
education and were employed outside the home. Probably the women in our study were not entirely typical of average women with ovarian cancer, as by virtue of their longer term survival they were, as described by one woman, “the lucky ones.” There may also have been a selection bias in women who chose to respond to a fairly lengthy survey questionnaire, which was limited to literate, English-speaking women who attended a university cancer treatment center or belonged to a community support group. It is known that support groups and, to a lesser extent, tertiary care cancer centers tend to attract well-educated, articulate, middleclass women [8]. This bias may be lessened by the fact that ovarian cancer is disproportionately a disease of educated middle and upper class women [16, 17]. Moreover, it is likely, although not possible to substantiate from our data, that these women were treated at an earlier stage of ovarian cancer or had less malignant tumors, such as germ cell tumors rather than epithelial ovarian cancers. Although these women had been diagnosed several years before, they continued to regard the overall impact of ovarian cancer on their lives to be very high. As a group, they enjoyed good to excellent physical health, and many of the symptoms they suffered were those of menopause and aging. However, they also suffered from some effects of cancer and its treatment, with more than half suffering from pelvic pain, bladder, and bowel problems. Although the majority of our women had either no discomfort or pain, or rated it as mild to moderate, over 20% of the women still suffered severe pain, which had a high impact on their lives. Nevertheless, most women remained very functional— only a tiny minority required any help with their activities of daily living and more than half continued to work for pay outside the home. Ovarian cancer survivors, despite physical scars, were generally satisfied with their body appearance, energy levels, and psychological well-being. Although reports of fatigue during active ovarian cancer treatment are common [9, 12, 18], the survivors in our study did not report more fatigue than population norms. Their mental health scores were better than those found in women during treatment for ovarian cancer [18] and statistically, but not necessarily clinically, better than those of the general population [10]. It may be that having survived a life-threatening illness, these women have put other life difficulties into perspective, altered their priorities, and thereby gained or retained better mental health. Cohen et al. have reported that cancer treatment may result in existential issues assuming greater importance, and the meaning of life and the value of each day may supercede other, now trivial, aspects of daily living [19]. As psychological well-being is more highly correlated with overall quality of life than physical, social, or spiritual well-being [8], it may partially explain why our survivors felt that the cancer experience had a positive effect on their lives. Ovarian cancer and its treatment clearly had a detrimental effect on 57% of women’s sex lives, an even higher percentage than the 30% reported for all gynecologic cancer patients [3] or the 23% reported for women treated for ovarian dysgerminoma
541
[20]. Not surprising, being under age 55 and married or in a stable relationship were predictive of reporting a more detrimental effect on sexuality. Sexual problems may have also been caused in some women from menopause without estrogen replacement, as well as from cancer treatment itself. Interestingly, the overall sense of loss relating to sexual functioning for most survivors was moderate to low, suggesting that they had changed or downgraded the meaning of sexuality after their illness. Women who had been treated with radiation developed more sexual problems, in keeping with a previous study on cervical cancer survivors [21]. Although a diminished sex life was reported by approximately three-quarters of survivors, nearly a quarter still described their current sex lives as excellent to above average, reinforcing the view that sexual satisfaction is determined more by attitude and relationship, rather than gonadal function. Other investigators have also found a high satisfaction with general functioning in survivors of gynecologic cancer, leading to the suggestion that intimacy is the primary element of sexual satisfaction [22]. Auchincloss reports that many gynecologic cancer survivors report feeling “more intensely alive” [7]. However, survivors reported some interesting concerns about sexuality after their diagnosis. In addition to concerns about actual sexual functioning after cancer treatment, over a third of the women feared that cancer treatment would make them sexually unattractive. Most surprising was the fear by over 10% of women that ovarian cancer had been caused by something connected to their own or their partners’ sexual activity. Moreover, 5% of survivors feared that sexual activity could make ovarian cancer worse and 2.5% felt that ovarian cancer could be contagious through sexual activity. It is clear that patient education should not only include discussion of sexual changes following ovarian cancer treatment but also address specific concerns about the etiology or aggravation of ovarian cancer through sexual activity. Concerns about loss of reproductive potential were reported by a small number of women who were under 55, premenopausal at the time of diagnosis, and who reported poorer mental health. Not surprisingly, ovarian cancer had a much greater impact on reproductive concerns for younger women who may have wanted one or more children before cancer diagnosis, and some of them still expressed strong feelings about the loss of their fertility. These feelings may have been reflected in their reports of poorer mental health. It is impressive that the vast majority of ovarian cancer patients, especially those with postsecondary education, felt that their illness had had an extremely positive effect on their lives, especially with respect to their relationships with family, friends, and others and their role performance as mother, partner, working woman, and caregiver. While many of the findings have been described in cancer survivors in general [4 –7], they were even more strongly expressed by our ovarian cancer survivors, perhaps because of the more serious prognosis of this disease. As others have noted [5], human beings are enormously adaptable and cancer survivorship has both positive and negative aspects. Although over half of all women in
542
STEWART ET AL.
our study had some symptoms, they saw the disease impact in positive terms and felt that their lives had been enriched by the experience. Their ability to adapt and transcend the challenges of cancer was impressive and inspiring! Although women did not use the words “existential” or “spiritual” in their descriptions, if one considers these terms to include the purpose and meaning of life, hopefulness, and transcendence, it appears that these aspects of the survivorship experience were important to many women. Our results suggest a number of issues that need further attention. In view of the widespread public belief that a positive fighting attitude is helpful in surviving cancer, it would be interesting to know whether the women in our study initially had such a positive outlook or whether it resulted from their good outcomes. The psychological predictors of resilient coping with cancer may be useful in designing better personal support programs for patients. The identification of social problems related to diagnosis and treatment, including those which are most burdensome and stigmatizing, could be helpful in building better systemic supports for cancer patients and their families. The claims of impaired thinking ability and memory following chemotherapy have been reported by other investigators [23] and deserve further objective study, with before and after psychometric testing to differentiate the effects of chemotherapy from those of stress, estrogen levels, or aging. As the number of cancer survivors increase, these and related issues will assume greater importance [24, 25]. CONCLUSIONS It may be helpful for women newly diagnosed with ovarian cancer to know that, although they will have some pain and discomfort during and following treatment, increasing numbers of women survive this disease, regard their health as good and excellent, and continue to lead productive, energetic, happy lives. Specific education of ovarian cancer patients should include information about life during and after treatment, including specific information about sexuality and its lack of association with the etiology or exacerbation of ovarian cancer [26]. Younger (premenopausal) women may benefit from discussion and support regarding their feelings about sexuality and loss of reproductive potential. Most importantly, women may be comforted by learning that most ovarian cancer survivors report an enriched life that results in them feeling strengthened and taking pleasure in things they had not previously appreciated. As one survivor poignantly quoted, “What doesn’t kill you makes you stronger.”
3. Andersen B, Anderson B, deProsse C. Controlled prospective longitudinal study of women with cancer: I. Sexual functioning outcomes. J Consult Clin Psychol 1989;75:683–91. 4. Andersen BL. Surviving cancer. Cancer 1994;74:1484 –95. 5. Andersen BL, Anderson B, deProsse C. Controlled prospective longitudinal study of women with cancer: II. Psychological outcomes. J Consult Clin Psychol 1989;57:692–7. 6. Anderson B, Lutgendorf S. Quality of life in gynecologic cancer survivors. CA Cancer J Clin 1997;47:218 –25. 7. Auchincloss SS. After treatment: psychosocial issues in gynecologic cancer survivorship. Cancer 1995;76(Suppl 10):2117–24. 8. Ersek M, Ferrell BR, Dow KH, Melancon CN. Quality of life in women with ovarian cancer. Western J Nurs Res 1997;19:334 –50. 9. Guidozzi F. Living with ovarian cancer. Gynecol Oncol 1993;50:202–7. 10. Ware JE (jr), Johnson SA, Davies-Avery A. Conceptualization and measurement of health for adults in the health insurance study, Vol. III, Mental health, Santa Monica, CA: Rand, 1979. Publication No. R-1987/3 HEW. 11. Schwartz JE, Krupp LB. The measurement of fatigue: a new instrument. J Psychosom Res 1993;37:753– 62. 12. Farrell BC, Dow K, Grant M. Measurement of the quality of life in cancer survivors. Qual Life Res 1995;4:523–31. 13. Cella D. Quality of life: concepts and definition. J Pain Symptom Management 1994;9:186 –92. 14. Padilla GV, Ferrell BR, Grant M, Rhiner M. Defining the content domain of quality of life for cancer patients with pain. Cancer Nurs 1990;13:108 –15. 15. Ferrans CE. Development of a quality of life index for patients with cancer. Oncol Nurs Forum 1990;17(3 Suppl):15–9. 16. Averette HE, Janicek MF, Menck HR. The national cancer database report on ovarian cancer. Cancer 1995;76:1096 –103. 17. Wingo PA, Tong T, Bolden S. Cancer statistics. CA Cancer J Clin 1995;45:8 –30. 18. Kornblith AB, Thaler HT, Wong G, Vlamis V, Lepore JM, Loseth DB, Hakes T, Hoskins WJ, Portenoy RK. Quality of life in women with ovarian cancer. Gynecol Oncol 1995;59:231– 42. 19. Cohen SR, Mount BM, Thomas JJ, et al. Existential well-being is an important determinant of quality of life: evidence from the McGill Quality of Life Questionnaire. Cancer 1996;77:576 – 86. 20. Mitchell MF, Gershenson DM, Soeters, R, Eifel P, Delclos L, Wharton JT. The long-term effects of radiation therapy on patients with ovarian dysgerminoma. Cancer 1991;67(4):1084 –90. 21. Schover LR, Fife M, Gershenson D. Sexual dysfunction and treatment for early stage cervical cancer. Cancer 1989;63(1):204 –12. 22. Wiejmar S WCM, Van den Weil HBM, Bouma J, Janssens J, Littlewood J. Psychosexual functioning after treatment of cancer of the vulva: a longitudinal study. Cancer 1990;66:402–7. 23. Brezden CB, Phillips KA, Abdolell M, Bunston T, Tannock IF. Cognitive function in breast cancer patients receiving adjuvant chemotherapy 2000; 18:2695–701. 24. McCartney C, Larson D. Quality of life in patients with gynecologic cancer. Cancer 1987;60:2129 –36.
REFERENCES
25. Stewart DE, Duff S, Wong F, Melancon C, Cheung AM. The views of ovarian cancer survivors on its cause, prevention and recurrence. Medscape Women’s Health. 2001;6 (http://www.medscape.com).
1. Young R. Ovarian cancer. CA Cancer J Clin 1995;45:69 –70. 2. Ferrell BR, Dow KH, Leigh S, Ly S, Gulasekaram P. Quality of life in long term cancer survivors. Oncol Nurs Forum 1995;22:915–22.
26. Stewart DE, Wong F, Cheung AM, Dancey J, Meana M, Cameron J, McAndrews MP, Bunston T, Murphy J, Rosen B. Information needs and decisional preferences among women with ovarian cancer. Gynecol Oncol 2000;77:357– 61.