Remedies and Life Changes among Invasive Cervical Cancer Survivors Howard P. Greenwald Ruth McCorkle
C
ervical cancer presents survivors with diverse challenges, including those of achieving resilience and integrating the disease experience into the fabric of life. The American Cancer Society (ACS) estimated that 9,710 cases of invasive cervical cancer would be diagnosed in the United States during 2006 (ACS, 2006). According to statistics from the National Cancer Institute’s Surveillance, Epidemiology, and End Results (SEER) program, the incidence rate of this disease declined by approximately 52% between 1975 and 2003 (Ries et al., 2006). During the same period, the mortality rate from this disease declined by more than half, with 5-year survival occurring at a rate of 73.3% for cases diagnosed between 1996 and 2003. For Howard P. Greenwald, PhD, is a Professor, School of Policy, Planning, and Development, University of Southern California, Los Angeles, CA. Ruth McCorkle, PhD, RN, is the Florence S. Wald Professor of Nursing, and Director of the Center for Excellence in Chronic Illness Care at Yale University, School of Nursing, New Haven, CT. Acknowledgment: Supported by SEER Special Studies, Connecticut Department of Health, National Cancer Institute, #2001-345. Note: Funding for this study was provided by a grant from the National Cancer Institute (2001-345, 10.31.0012.31.02).
This study addresses health practices and perceived disease impact among long-term survivors of invasive cervical cancer. Little is now known about how these women adapt and how often positive changes may result from their experience. Interviews were conducted with 208 individuals 6 to 29 years post-invasive cervical cancer diagnosis identified through the Connecticut Tumor Registry. Questioning focused on alternative remedies used, health practices, life priorities, and health status. Despite the challenges associated with a history of cervical cancer, women interviewed in this study found opportunities for adaptation and growth. Health professionals should inform cervical cancer patients about remedies that women have found valuable in promoting recovery, as well as share information about how survivors have grown personally through the disease experience.
2003, SEER estimated that approximately 254,000 women in the United States were alive with histories of invasive cervical cancer. The population of women with histories of cervical cancer includes many individuals at the peak of their working and family-building years, and with long life expectancies. Researchers note numerous consequences of cancer and cancer treatment, including physical dysfunction and pain associated with treatment as well as disease (Bonica, 1979; Chapman, Syrjala, & Sargur 1985; Coyle & Foley, 1985; Daut & Cleland, 1982; Davis, Cullin, Miller, & Titus, 1986; Dobkin & Morrow, 1986; Poplack & Brouwers, 1987). Studies report adverse effects on mental health (Derogatis et al., 1983; Kornblith et al., 1992; McCorkle, Tang, Greenwald, Holcombe, & Lavery, 2006), family life (Lewis & Hammond, 1996; Shands, Lewis, & Zahlis, 2000),
UROLOGIC NURSING / February 2007 / Volume 27 Number 1
work productivity (Yabroff, Lawrence, Clauser, Davis, & Brown, 2004), and employability (Bradley, Bednarek, & Newmark, 2003; Greenwald, Dirks, Borgatta, Yelin, & Nevitt, 1989). Survivors of cervical and other gynecological cancers may face special challenges regarding sexual functioning, child bearing, and other family-related matters (Bukovic et al., 2003; Corney, Everett, Howells, & Crowther, 1992; Jensen et al., 2004; Juraskova, Butnow, & Robertson, 2003). Sexual dysfunction is apparent in women who have undergone oophorectomy (Elit, Esplen, Butler, & Narod, 2001; Robson et al., 2003), although such findings are not universal (Roussis, Waltrous, Kerr, Robertazzi, & Cabbad, 2004). Effects of both surgery and radiation treatment for cervical cancer include potentially longterm urinary tract and anorectal dysfunction (Huang, Wang, Hsu, 47
Introduction/Overview The research reported here assesses the impact of invasive cervical cancer on a population of long-term survivors (between 6-29 years). The study aims at learning more about the adaptations women make to this disease over the extended course of the life cycle. Unlike most other studies, the research reported here focuses on women who have survived far beyond the 5-year benchmark often employed. Also unlike most other studies, the research reported here does not primarily address the challenges faced by women with histories of invasive cervical cancer. Rather, this study concentrates on the woman’s adaptation, including (a) identification of therapies and practices other than those recommended by her physician, and (b) adoption of positive changes in lifestyle and outlook in response to cervical disease and its treatment. Purpose This study aims at reporting information about long-term survivors of invasive cervical cancer, a category of women that has received almost no attention in the literature due to the absence of appropriate data. Second, it aims at adding to a relatively new literature that emphasizes a woman’s initiative in her own recovery. Such information, when shared with women with invasive cervical cancer, can prove a source of encouragement and may promote future recovery. Methods A sample of 208 women with histories of invasive cervical cancer was obtained from the Connecticut Tumor Registry. These women were interviewed by personnel from the Yale School of Nursing to obtain information on disease impact, remedies adopted, and life changes attributable to invasive cervical cancer or its treatment. The research instrument contained well-validated, multi-item scales to measure depression (a potentially important background variable) and personal growth following trauma.
& Sun, 2006; Jackson & Naik, 2006; Stewart & Viswanathan, 2006). Researchers have begun to acknowledge the importance of movement by cancer survivors beyond the adverse physiological and psychosocial consequences of their disease. Over the past
48
Data on individual treatment, stage, and other clinical variables were obtained from the Connecticut Tumor Registry. The interview and registry data obtained were analyzed using frequency distributions and Pearson correlation. Findings Alternative remedies most frequently reported included vitamins/ supplements (80.3%), individual prayer (69.7%), massage (38.5%), and herbs/teas (36.1%). Positive impact of cervical cancer was reported to occur in areas such as religious beliefs (34.9%), diet (33.5%), and exercise (27.4%). Majorities of the women interviewed reported great to very great changes in appreciation for the value of their lives (66.1%), appreciation of each day (61.4%), and ability to handle difficulties (59.1%); high percentages reported great to very great changes in areas such as ability to count on people (49.1%), adjusting life priorities (45.4%), and putting effort into relationships (25%). Among women reporting impact in areas relevant to spiritual consciousness and health promotion, majorities reported the impact to be positive. However, net negative impact of an often-substantial nature was reported in emotional/psychological needs, love life, family plans, financial situation, and health insurance. Neither cancer stage nor social background factors strongly mediated the practices, areas of impact, and life changes reported here. Conclusions Despite the challenges associated with a history of cervical cancer, many women interviewed in this study found opportunities for adaptation and growth. For most, the areas of growth and coping reported seem likely to mitigate rather than erase the effects of invasive cervical cancer and its treatment. However, the women taking part in this study report high levels of satisfaction with alternative remedies and benefits from life changes.
decade, interest in survivorship and the quality of life has increased substantially among researchers (Avis et al., 2005; Brady, Peterman, Fitchett, Mo, & Cella, 1999; Ersek, Farrell, Dow, & Melancon, 1997; O’Conner, Pronk, Tan, & Whitebird, 2005; Wenzel et al., 2002). Related
studies have focused on positive changes, such as initiatives taken by survivors to achieve health and adoption among survivors of constructive and optimistic thinking and behavior. The research reported here assesses the frequency with which such attitudes and behaviors prevail among long-term cervical cancer survivors. Study of this population is particularly instructive due to the physical and emotional challenges women in it face and the long post-treatment lives many of them live.
Materials and Methods Subjects. A sample of women with histories of invasive cervical cancer was obtained from the Connecticut Tumor Registry, which is part of a system of cancer registries under contract with and operating according to standards set by SEER. In operation since 1974, SEER registries attempt to include all new cases of cancer in their catchment areas, through surveillance of physicians’ and surgeons’ offices, hospitals, pathology laboratories, and other organizations known to diagnose and treat cancer (Mettlin, Menck, Winchester, & Murphy, 1997; Zippin, Lum, & Hankey, 1995). For each case, SEER records include dates of diagnosis and treatment, stage, basic demographics, and geographic information. Disease status and survival are updated periodically through contact with physicians’ offices and checking of names against records in the National Death Registry. Individuals were selected from the Connecticut Tumor Registry who had been diagnosed with primary, invasive cervical cancer between 1975 and 1995, had survived up to March 2000, could be contacted via letter or telephone, and were able and willing to complete a telephone interview. Following clearance by physicians of record, letters were sent to potential subjects to explain the study. The letters contained an informed consent statement explaining the study, a return note card indicating inter-
UROLOGIC NURSING / February 2007 / Volume 27 Number 1
est in participation, and a postage-paid return envelope. On the note card, women who were willing to participate in the study provided a telephone number and indicated a convenient time for an interviewer to call. All procedures were submitted to and approved by the Yale Human Subjects Committee. The Connecticut Tumor Registry contained 1,724 records of living women who were diagnosed with invasive cervical cancer between 1975 and 1995. Among these, the records of 1,446 were listed with a physician of record. Of the women for whom a physician was listed, the physician’s permission was obtained to contact 793 of the women. Letters were mailed to these women; 573 of the letters were returned with no forwarding address. A total of 256 written responses were received from the subject or (where the subject was deceased) from her family. Of these responses, 11 women were deceased and 16 women refused, leaving a total of 229 women who consented to be interviewed. Among the women who initially agreed to participate, 19 later declined. A total of 208 women were eventually interviewed. The telephone survey administered to these women requested basic demographic information and assessed health status, emotional state, health behavior, family life, lifestyle, and employment. Stage, initial treatment, and date of diagnosis were obtained from Connecticut Tumor Registry records. This information is summarized in Table 1. Overall, the women interviewed closely resembled all women in the Connecticut Tumor Registry who had been diagnosed with invasive cervical cancer between 1975 and 1995, and who were alive in 2000. Utilizing tumor registry data, the investigators compared individuals interviewed with those not interviewed on the dimensions of stage, residential location (county), surgical treatment, and age. The research team found no
Table 1. Characteristics of Women in Study Characteristic
Percent (N)a
Caucasian
92.3 (192)
Married
66.0 (130)
High school graduate
90.4 (194)
Family income $60,000 and over
57.0 (114)
Diagnosed with localized disease
86.0 (163)
Received surgery
85.6 (178)
Received radiation therapy
29.3 (61)
Had ovaries removed
46.2 (80)
Believed cancer cured
92.2 (190) b
Age at interview 54 or over
50.2 (104)
Age at diagnosis 39 or overc
50.3 (95) d
Years post-diagnosis 13 or more
55.3 (106)
a
N (in parentheses) = number of subjects in each demographic, treatment, or time since diagnosis category. b Median age at interview: 54 c Median age at diagnosis: 39 d Mean years post diagnosis: 13.9
statistically significant differences between interviewed and non-interviewed cases in stage and county of residence. Those not interviewed were more likely to have received surgery than those not interviewed (87.5% vs. 77.0%, Chi-square = 34.7, p < 0.001). The percentages age 50 and under among those interviewed and those not interviewed (34% vs. 29.2%) did not differ by a statistically significant margin (Chi-square = 1.9, n.s.). However, individuals 80 years and over were less frequent among those interviewed than among those not interviewed (3.9% vs. 11.8%, Chi-square = 11.8, p < 0.01). Indicators. Three sets of indicators were used. First, a list of alternative remedies frequently used by Americans (Eisenberg et al., 1998) and by cancer patients, typically along with allopathic treatment (Cassileth & Deng, 2004), was presented to interview subjects. Each item was accompanied by response options including ever used for cervical disease, used before cervical cancer, still using, and degree of satisfaction (very satisfied, somewhat satis-
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fied, not satisfied, don’t know). Second, subjects were asked perceived impact of cancer on areas such as financial situation, exercise activities, religious beliefs and activities, and ability to care for others. For each item, response options included very negative impact, somewhat negative impact, no impact, somewhat positive impact, and very positive impact. Finally, the interview instrument contained the Post Traumatic Growth Inventory (PTGI) (Tedeschi & Calhoun, 1996), which presents subjects with items on life change including priorities about what is important in life, appreciation for the value of own life, better understanding of spiritual matters, sense of closeness to others, and putting effort into relationships. For each item, response options included no change, very small change, small change, moderate change, great change, and very great change. Statistical analysis. Frequency distributions were computed for demographics of the sample obtained and for remedies used, perceived impact of cervical cancer, and the PTGI. Pearson correla-
49
Table 2. Reported Use of Remedies Percent (N)a Remedy
Ever Used for Cervical Diseaseb
Used Before Cervical Cancerc
Still Very or Somewhat Using/Practicingd Satisfiede
Vitamins/Supplements
80.3
(167)
38.5
(80)
71.6
(149)
79.5
(132)
Individual prayer
69.7
(145)
51.0
(106)
65.4
(136)
96.6
(140)
Massage
38.5
(80)
8.2
(17)
23.6
(49)
90.0
(72)
Herbs/teas
36.1
(75)
10.6
(22)
27.4
(57)
85.3
(64)
Visualization/meditation
31.3
(65)
11.1
(23)
24.1
(50)
95.3
(61)
Yoga
19.2
(40)
5.8
(12)
10.1
(21)
87.5
(35)
Healing touch/Reiki
14.4
(30)
1.4
(3)
6.7
(14)
70.4
(19)
Spiritual/faith healer
10.1
(21)
3.4
(7)
5.3
(11)
95.3
(20)
Healing mass
8.7
(18)
1.5
(3)
3.8
(8)
77.8
(14)
Acupuncture
8.2
(17)
1.9
(4)
1.9
(4)
70.6
(12)
a
N (in parentheses) = number of individuals scored “1” on each of four interview items, as referenced below. Units of measure: yes=1, no=0 c Units of measure: yes=1, no=0 d Units of measure: yes=1, no=0 e Units of measure: very satisfied or satisfied = 1; not satisfied or don’t know = 0 b
tions were obtained between these indicators and clinical and socioeconomic variables, including cancer stage at diagnosis, age, annual family income, years of education, and race (white vs. non-white).
Results Of the women interviewed, the vast majority (87%) had used a remedy for their cervical disease other than those their doctors had recommended. Table 2 reports findings for the ten most frequently reported remedies. The table presents percentages of women who had ever used each remedy for cervical cancer, who had used the remedy before being diagnosed with cervical cancer, who were still using the remedy, and who felt either very or somewhat satisfied with the remedy. Majorities of those interviewed reported having used vitamins and supplements (80.3%) and individual prayer (69.7%). Considerable minorities of the women interviewed reported using massage (38.5%), herbs and teas (36.1%), and visualization or meditation (31.3%). It is notable that majorities of those
50
who had used a specific remedy continued to use it at the time of the interview. It appears that many who began using a remedy for cervical cancer had not used it prior to their disease, but continued to use it after the initial episode was over. For example, although only 11.1% used visualization or meditation before their disease episode, 24.1% reported continuing to use it at the time of the interview. Generally, the women reported high levels of satisfaction with the remedies they practiced. Individual prayer and use of a spiritual or faith healer were associated with the highest levels of satisfaction, with 96.6% and 95.3%, respectively, reporting that they were very or somewhat satisfied. Table 3 reports perceived impact of cervical cancer, both positive and negative, by specific area. In all areas presented in Table 3, the majority of women reported no change. Moderate percentages, though, reported positive impact on religious beliefs (34.9%), diet (33.5%), exercise activity (27.4%), and other spiritual activities. Among women
reporting impact in areas relevant to spiritual consciousness and health promotion, majorities reported the impact as positive. However, net negative impact of an often-substantial nature was reported in emotional/psychological needs, love life, family plans, financial situation, and health insurance. Table 4 presents results from the PTGI. Response options were collapsed to combine “great change” and “very great change” into a single category, and to combine “no change” and “small change” into a second category. Majorities and high percentages indicated that they had experienced great to moderate changes in appreciation of the value of their own lives (66.1%), appreciating each day (61.4%), ability to handle difficulties (51.9%), ability to count on people (49.1%), discovery of new strength (48.5%), compassion for others (48.1%), and life priorities (45.4%). Majorities of the women reported small or no change in understanding spiritual matters, strength of religious faith, willingness to express emotions, and establishing a new path in life.
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Table 3. Reported Impact of Cervical Disease Percenta Area of Impact
Positive Impact
No Negative Impact Impact
Nb
Religious beliefs
34.9
65.2
3.0
198
Diet
33.5
55.2
11.3
203
Exercise activity
27.4
55.7
16.9
201
Other spiritual activities
24.3
75.8
1.6
190
Care to others
20.9
73.8
5.2
191
Social life
19.6
68.1
12.3
204
Emotional/psychological needs
19.1
55.9
25.0
204
Work life/career
15.9
71.4
12.7
189
Love life
15.0
52.5
32.5
200
Family plans
13.5
62.0
24.5
200
Educational plans
10.8
84.1
5.1
176
Child support/care
10.3
81.0
8.6
174
Retirement plans
8.2
85.6
6.2
195
Living arrangements
7.0
93.1
5.0
202
Financial situation
4.5
79.1
16.4
201
Retain/change health insurance
0.0
88.1
11.8
194
a
Units of measure (categorical variable): “positive impact” = combined response options from interview items “very positive” and “somewhat positive;” “no impact” = response item “no impact;” “negative impact” = combined response options “somewhat negative” and “very negative.” b N = number of individuals responding to interview item.
However, the percentages who reported great to very great changes in these areas (between 25.4%-30.0%) are still notable. Correlation coefficients between the items presented in Tables 2 through 4 and cancer stage and social background factors tended to be low. No statistically significant coefficients were found between either stage or race and any of the remedies listed in Table 2. Age in years correlated negatively with use of massage (r = -0.19, p
