ABLEnews Data Line [The following file may be freq'd as CASURVEY.* from 1:109/909 and other BBS's that carry the ABLEFiles Distribution Network (AFDN). Please allow a few days for processing.] Cancer Survivors' Survey COMPUTER-BASED SURVEY OF CANCER SURVIVORS Jacqueline Fawcett, PhD, RN, FAAN Professor University of Pennsylvania School of Nursing Philadelphia, PA 19104-6096 (215)898-8289 E-Mail: Fawcett@SON.Nursing.UPenn.Edu The willingness of the respondents to share their cancer-related experiences is very much appreciated. This survey was conducted to identify specific problems experienced by cancer survivors, strategies used to cope with those problems, and suggestions with regard to what could be done and by whom to help the cancer survivor cope more effectively. A survey questionnaire was distributed on the Internet via CompuServe, Usenet news on the Internet, and via the Wide-World-Web and gopher server OncoLink. The respondents were asked to identify the physical, emotional, employment, and insurance problems they had experienced as a result of having had cancer, what coping strategies they had used, what could be done to help them cope better, and who could help them cope better. The Respondents Thirty cancer survivors responded to the survey within a 3 month period in the spring of 1994. All of the respondents reside in the United States, except one British citizen who currently resides in Switzerland. The respondents ranged in age from 20 to 67 years (average age = 43.7 years). Sixteen (53%) respondents were male and 14 (47%) were female. The vast majority (93%) of the respondents were Caucasian; the remainder (7%) were Asian. All of the respondents had attended college and almost one- half (45%) had completed graduate school. Forty-eight percent of the respondents had managerial or professional occupations, 21% had either clerical or computer-related occupations, 14% were students, 7% were homemakers, and 10% were retired. The respondents had received the initial diagnosis of cancer as long ago as 1950 (1 respondent) and as recently as within 4 months of answering the survey questionnaire (1 respondent). Almost one-third (30%) of the other respondents received the cancer diagnosis in the 1980s and almost two-thirds (60%), in the 1990s. One respondent did not report the year of diagnosis. As can be seen in Table 1, respondents reported many different cancer diagnoses. Two respondents reported having second cancers. One of these respondents had two separate tumors of the neck; the other respondent had an initial diagnosis of rhabdomyosarcoma with subsequent metastases to the spleen, kidney, and liver. Cancer treatment undergone by respondents included surgery (83%), chemotherapy (60%), and radiation therapy (53%). TABLE 1. INITIAL CANCER DIAGNOSES (30 RESPONDENTS) Type of Cancer Number of Respondents Percent Breast 6 20% Testicular 4 13% Prostate 3 10% Hodgkins 3 10% Multiple Myeloma 3 10% Brain 2 7% Acute Lymphocytic Leukemia 1 3% Ovarian 1 3% Head/Neck 1 3% Thyroid 1 3% Parathyroid 1 3% Peritoneal 1 3% Renal 1 3% Rhabdomyosarcoma 1 3% Not reported 1 3% Problems Experienced by the Respondents Eighteen (60%) respondents reported that they had experienced physical problems related to the cancer diagnosis and treatment-- 7 (39%) of the 18 respondents had one problem; 4 (22%), two problems; 5 (28%), three problems, and 2 (11%), four physical problems. The types of physical problems experienced are listed in Table 2. In addition, 23 (73%) of the respondents reported that they had experienced emotional problems related to having had cancer-- 13 (56%) of the 23 respondents had one problem; 5 (22%), two problems; and 5 (22%), three emotional problems. The types of emotional problems experienced are listed in Table 3. TABLE 2. PHYSICAL PROBLEMS REPORTED BY 18 RESPONDENTS Problem Number of Respondents Percent Sexual 4 22% Urinary 4 22% Fatigue 4 22% Bowel 3 17% Vision 3 17% Loss of hair 3 17% Pain 3 17% Neurological 2 11% Shortness of breath 2 11% Skin 2 11% Balance 2 11% Bone 2 11% Hypertension 1 6% Voice 1 6% Sleep disturbance 1 6% Nausea 1 6% Loss of weight 1 6% Premature menopause 1 6% Some respondents reported more than one problem. TABLE 3. EMOTIONAL PROBLEMS REPORTED BY 23 RESPONDENTS Inability to plan ahead 1 4% Irritability 1 4% Emotional numbness 1 4% Alcoholism 1 4% Want to feel "normal" 1 4% Some respondents reported more than one problem Just 5 (17%) of the 30 respondents experienced employment problems related to the cancer diagnosis and treatment. Two of the five respondents reported that they had been too ill to work, one had been too ill to attend school, one reported the loss of some business, and another indicated that difficulty securing initial employment was due to a very soft, breathy voice that was a result of the treatment received for thyroid cancer during childhood. In contrast, 11 (37%) respondents experienced problems with health or life insurance. Seven (64%) of the 11 respondents' problems involved delays by insurance carriers to pay for treatments. In addition, two respondents reported that they were unable to obtain life insurance. Coping Strategies Used by the Respondents Twenty-eight (93%) respondents reported using various strategies to cope with being a cancer survivor. The most frequently used strategies were: * Maintaining a positive outlook * Reading about cancer and cancer treatments * Talking to other people about being a cancer survivor * Remaining angry and fighting the cancer * Other frequently used strategies included: + Using meditation, visualization, or biofeedback + Keeping busy by working hard + Taking one day at a time * Still other strategies used by the respondents included: + Intellectualizing the cancer experience + Denying the cancer + Crying + Laughing and joking + Living life to the fullest + Scheduling regular medical examinations + Examining own body for signs of cancer + Writing in a personal journal + Changing life priorities + Going on special diets + Seeking counseling * What and Who Could Facilitate More Effective Coping All 30 respondents answered the item asking for suggestions about what could help them to cope better. Seven (23%) respondents indicated that nothing could help, and one (3%) respondent stated, "Don't know." The most frequently identified suggestions for more effective coping were: * Support groups for specific types of cancer * Greater knowledge about the cancer disease process and new treatments * Support from partner and family members * Someone to talk to Other suggestions included: * Counseling * Support from physicians * Fighting the cancer Twenty-eight (83%) of the 30 respondents answered the item asking them to identify who could help them to cope better. Three (11%) of the 28 respondents stated, "Don't know"; four (14%) stated, "No one"; and two (7%) stated, "Myself." People who could help, listed in order of frequency cited, were: * Physicians * Other cancer survivors * Someone to talk to * Nurses * Family members * Friends Discussion The survey results indicate that the respondents experienced a broad range of physical problems, but that no one type of problem was predominant. Furthermore, some respondents noted that the physical problems were temporary. For example, surgery for prostate cancer resulted in temporary impotence and temporary incontinence. In contrast, other respondents indicated that some physical problems were permanent. For example, surgery for childhood thyroid cancer resulted in a permanent voice change. The results also indicate that more respondents experienced emotional than physical problems as a result of having had cancer. Although several emotional problems were reported, fear of a recurrence of cancer was predominant. The respondents were not asked to report the intensity of their physical and emotional problems. Examination of the actual content of their responses, however, revealed that, as might be expected, the more recent the cancer diagnosis, the more intense the problems. Very few respondents reported employment problems. In fact, to the contrary, many respondents noted that their employers had been and continued to be very supportive. Insurance problems were, however, experienced by more than one-third of the respondents. The reluctance of health insurance carriers to pay for cancer treatments created considerable frustration for the respondents, who had to "fight the system" at a time when they were struggling to fight the cancer and reduce external stressors. Clearly, this is an area that must be addressed in health care reform. The respondents used many different strategies to cope with cancer treatment and being a cancer survivor. Examination of the content of the responses suggested that the choice of coping strategies is an individual matter and that no one strategy is best for all cancer survivors. The suggestions from the respondents with regard to what could be done and by whom to enhance coping clearly indicated that cancer survivors want to discuss their experiences with other cancer survivors in support groups that are targeted to specific types of cancer. Furthermore, the results indicate that cancer survivors benefit from and need continued support from their family members, friends, physicians, and nurses. Finally, at least the respondents to this survey want to learn more about the cancer disease process and advances in cancer treatment because they believe that knowledge is power. The survey respondents obviously represent a select sample of well-educated, articulate, computer-literate people. The extent to which their responses can be generalized to other cancer survivors requires further study. The survey did, however, provide valuable information that has enhanced health care professionals' understanding about the problems faced by cancer survivors and the strategies they use to cope with those problems. Moreover, the survey results should alert health care professionals to the need for targeted support groups that permit cancer survivors to interact with other survivors of the same type of cancer. Thanks for participating in this survey! OncoLink can be reached on the Wide-World-Web by: http://cancer.med.upenn.edu/ [with a tip of our ABLEnews' hat to Bryan Thorp on Carcinoma] A Fidonet-backbone echo featuring disability/medical news and information, ABLEnews is carried by more than 325 BBSs in the US, Canada, Australia, Great Britain, Greece, New Zealand, and Sweden. The echo, available from Fidonet and Planet Connect, is gated to the ADANet, FamilyNet, and World Message Exchange networks. 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