Karin Bergmark

Vaginal Changes and Sexuality in Women with a History of Cervical Cancer

BACKGROUND In women with cervical cancer, treatment causes changes in vaginal anatomy and function. The effect of these changes on sexual function and the extent, if any, to which they distress women are not known. METHODS In 1996 and 1997, we attempted to contact 332 women with a history of early-stage cervical cancer (age range, 26 to 80 years) who had been treated in 1991 and 1992 at the seven departments of gynecological oncology in Sweden and 489 women without a history of cancer (controls) to ask them to answer an anonymous questionnaire about vaginal changes and sexual function. RESULTS We received completed questionnaires from 256 of the women with a history of cervical cancer and 350 of the controls. A total of 167 of 247 women with a history of cancer (68 percent) and 236 of 330 controls (72 percent) reported that they had regular vaginal intercourse. Twenty-six percent of the women who had cancer and 11 percent of the controls reported insufficient vaginal lubrication for sexual intercourse, 26 percent of the women who had cancer and 3 percent of the controls reported a short vagina, and 23 percent of the women who had cancer and 4 percent of the controls reported an insufficiently elastic vagina. Twenty-six percent of the women who had cancer reported moderate or much distress due to vaginal changes, as compared with 8 percent of the women in the control group. Dyspareunia was also more common among the women who had cervical cancer. The frequency of orgasms and orgasmic pleasure was similar in the two groups. Among the women who had cervical cancer, the type of treatment received had little if any effect on the prevalence of specific vaginal changes. CONCLUSIONS Women who have been treated for cervical cancer have persistent vaginal changes that compromise sexual activity and result in considerable distress.

Patient-rating of distressful symptoms after treatment for early cervical cancer

Background. More refined information on sources of symptom‐induced distress in a patient population can improve the quality of pretreatment information, make follow‐up visits more efficient and guide research priorities in the efforts to modify treatments.

Distressful symptoms after radical radiotherapy for urinary bladder cancer.

BACKGROUND Radical radiotherapy for muscle-invasive urinary bladder cancer can sterilize the tumour with preserved organ function. Here we studied symptoms, symptom distress and trade-off among long-term survivors and compared figures to those of population controls and patients who had undergone cystectomy. MATERIALS AND METHODS We identified 71 patients who had had urinary bladder cancer treated with radical radiotherapy before 1995. For comparison, 325 patients treated with radical cystectomy and urostomy, continent or non-continent, during the same period and 460 individuals randomly selected from the general population were included. Information was collected by means of an anonymously answered postal questionnaire to avoid investigator-related bias. RESULTS Answers were obtained from 58 (82%) radiated patients, 251 (85%) cystectomized patients and 310 (71%) population controls. Of the radiated patients, 74% reported little or no distress from symptoms from the urinary tract, 38% had had intercourse the previous month and 57% (men) reported they had ejaculated. Among the cystectomized patients, 13% had had intercourse and 0% (men) had ejaculated. Moderate or much distress from symptoms from the gastrointestinal tract was reported by 32% of the radiated patients, 24% of the cystectomized patients and 9% of the population controls. After radical radiotherapy, 46% of the patients were willing to accept some risk of decreased survival to become symptom-free. CONCLUSIONS About 3/4 of these long-term survivors after radical radiotherapy for bladder cancer had a functioning urinary bladder with little or no distress from the urinary tract. The prevalence of sexual dysfunction was lower than after cystectomy and the prevalence of distress from the gastrointestinal tract was comparable.

Distressful Symptoms after Radical Cystectomy with Urinary Diversion for Urinary Bladder Cancer: A Swedish Population–Based Study

Objective: To study the excess prevalence of distressful symptoms after radical surgery for urinary bladder cancer. Methods: We included all patients who underwent cystectomy due to bladder cancer before 1996 in Stockholm County. A control group was randomly selected from the general population. Information was collected by means of an anonymous postal questionnaire. Results: Completed questionnaires were returned by 310 (71%) controls and 251 (85%) cystectomized individuals. A 5–fold (reservoir) and 9–fold (conduit) increase in defecation urgency and a 4–fold (reservoir) and 6–fold (conduit) increase in faecal leakage were reported in individuals operated on. Urinary tract infection was increased 3–fold in cystectomized individuals compared with controls, during the previous year 26% of the patients reported a symptomatic infection. The perception of a reduced physical attractiveness due to disease was more than 5–fold increased in the men operated on compared to the controls. The majority, 135 out of 201 (67%), reported that they would have refused alternative bladder–sparing procedures if they decreased the prospects of survival by even as little as 1%. Conclusions: The patient’s situation after cystectomy is considerably impaired due to changed bowel and sexual function, urinary tract infections and a sense of decreased attractiveness. However, most patients are in spite of this unwilling to compromise survival.

Measuring anxiety and depression in the oncology setting using visual-digital scales.

We investigated the feasibility of using single-item visual-digital scales for measuring anxiety and depression for research purposes within the oncology and palliative care setting. Data were retrieved from five nationwide postal questionnaires comprising 3030 individuals (response rate 76%): cancer patients, widows/parents who had lost their husband/child to cancer and population controls. All questionnaires contained the Center for Epidemiological Studies Depression scale (CES-D) and Spielbergers State-Trait Anxiety Inventory (STAI-T) as well as seven-point Visual-Digital Scales (VDS) assessing anxiety and depression. Each stepwise increased score on the VDS-depression provided a statistically significant increase in the mean score on CES-D (Spearmans r=0.582). The VDS-anxiety correlated with mean scores on STAI-T (Spearmans r=0.493), however, not all stepwise increased scores on the VDS-anxiety gave a statistically significant increase on the STAI-T. Positive- and negative predictive values were 51% and 91% for VDS-depression and 64% and 80% for VDS-anxiety. Missing data for STAI-T were 7% and 9% for CES-D; the corresponding figures were 2% for the VDS-depression and 3% for VDS-anxiety. With low attrition and agreement with psychometric scales, the Visual-Digital Scales are a feasible alternative for research in the oncology setting. However, the high negative predictive value and the low positive predictive value suggest that the visual- digital scales mainly detect the absence of the symptoms.

Relative importance of sources of symptom-induced distress in urinary bladder cancer survivors

OBJECTIVE The influence of specific symptoms on emotions and social activities in the individual patient varies. Little is known about this variation in urinary bladder cancer survivors (in other words, about the relative importance of sources of symptom-induced distress). METHODS We attempted to enroll 404 surgical patients treated with cystectomy and a conduit or reservoir in four Swedish towns (Stockholm, Orebro, Jönköping, Linköping), 101 surgical patients treated with cystectomy and orthotopic neobladder at the Herlev Hospital in Copenhagen, Denmark, and 71 patients treated with radical radiotherapy for bladder cancer, as well as 581 men and women controls in Stockholm and Copenhagen. An anonymous postal questionnaire was used to collect the information. RESULTS A total of 503 out of 576 (87%) treated patients and 422 out of 581 (73%) controls participated but 59 patients were excluded. The primary source of self-assessed distress among cystectomised patients was compromised sexual function; reduced intercourse frequency caused great distress in 19% of the conduit patients, 20% of the reservoir patients and 19% of the bladder substitute patients. The primary source of self-assessed distress in patients treated with radical radiotherapy was symptoms from the bowel; 17% reported great distress due to diarrhoea, 16% due to abdominal pain, 14% due to defecation urgency and 14% due to faecal leakage. The highest proportion of subjects being distressed was 93% (substantial: 43%, moderate: 29% and little: 21%) for treated upper or lower urinary retention (indwelling catheter or nephrostomy). CONCLUSION The distress caused by a specific symptom varies considerably and the prevalence of symptoms causing great distress differs between treatments in bladder cancer survivors. It is possible that patient care and clinical research can be made more effective by focusing on important sources of symptom-induced distress.

Disclosure of Incurable Illness to Spouses: Do They Want to Know? A Swedish Population-Based Follow-Up Study

PURPOSE Awareness of the cancer patients terminal state decreases the risk of psychological morbidity of the bereaved. We wanted to determine whether male spouses of cancer patients who died from their disease had received information that the illness was incurable and to determine their preferences of disclosure. PARTICIPANTS AND METHODS The study included 907 widowers whose wives had died of cancer. In an anonymous questionnaire, we asked whether the widower had received information that his wifes illness was incurable and about his attitudes towards receiving this information. RESULTS Six hundred ninety-one widowers (76%) participated. Eighty percent of the widowers reported that they were told [corrected] that the wifes cancer was incurable, and 21% reported that they had been informed within 1 week before the patients death. Although 14% of the widowers did not think the next of kin should be told immediately when the patients cancer is beyond cure, 39% of the men did not want the patient to be immediately informed. Furthermore, 71% of the men who were never informed about the incurable illness believed that the next of kin should receive that information immediately. CONCLUSION Although a large majority of men prefer an immediate disclosure about the incurable stage of their wifes illness, 41% of the husbands received this information during the last week of the patients life or not at all. These findings indicate that there is room for improvement in the level of communication between health providers and the husbands of women with incurable cancer.

Time after surgery, symptoms and well-being in survivors of urinary bladder cancer

To evaluate how an increasing burden of symptoms influences well‐being, anxiety and depression at different intervals after a radical cystectomy with urostomy for bladder cancer, as this therapy can induce long‐term distressful symptoms.

Synergy between sexual abuse and cervical cancer in causing sexual dysfunction

Experiencing a sexual abuse creates a life-long traumatic memory. The life-long effect of such abuse on sexuality, well-being, the risk of contracting cervical cancer, or problems after treatment for cervical cancer is not known. A population-based follow-up study in 1996–97 that used an anonymous postal questionnaire for data collection, 256 women with stage IB-IIA cervical cancer registered in 1991–92 in Sweden, and 350 women without cervical cancer frequency matched for age and region of residence, provided information. Among the women with a history of cervical cancer and the control women, 46 (18%) and 50 (15%), respectively, reported a history of sexual abuse. The follow-up was 1–70 years after the sexual abuse. The relative risk (with 95% confidence interval) of decreased well-being was 2.4 (1.1–5.2) among controls and 2.7 (1.1–6.4) among former cervical cancer patients. A history of both sexual abuse and cervical cancer gave a relative risk of 30.0 (7.0–129.0) for superficial dyspareunia. Sexual abuse increased the risk of sexual problems after treatment. The sexually abused cervical cancer patients were generally less willing than other patients to trade off possible maximal survival and forgo parts of the treatment. A history of sexual abuse and cervical cancer are both independent risk factors for sexual dysfunction and decreased well-being, and there may be a large synergy when both factors are combined. Diagnosis and treatment of cervical cancer may be improved by recognition of a sexual abuse history.

Preoperative sexual function in women with rectal cancer.

BACKGROUND Even though sexual dysfunction has been reported after rectal cancer treatment, information on preoperative sexual function is scarce, particularly in female patients. AIMS To describe preoperative sexual function in women with rectal cancer, and to analyse potential sources of bias. METHODS The Female Sexual Function Index (FSFI) was administered to women with newly diagnosed non-metastatic rectal cancer, irrespective of whether they were sexually active or not. FSFI total and domain scores were calculated for women with complete responses to the corresponding items. Data were compared for those who did and did not complete all the FSFI domains, and for women in the study cohort, and those who were eligible for inclusion but not included. RESULTS Sexual inactivity was common. Mean FSFI total score was low (16.4 ± 10.6 SD) among the women who completed all six FSFI domains. The proportion of women who had a partner was higher in this group compared with those who did not complete all the domains (49 of 57 vs 7 of 25, p < 0.001). Eighty-two of the 157 women eligible for inclusion were included. Included women were younger (p = 0.002) and had less co-morbidity than those who were not included (p = 0.025). CONCLUSIONS The low FSFI total score indicates sexual dysfunction. However, the use of FSFI in both women who are and who are not sexually active complicates interpretation of the data and may result in an information bias hampering internal validity. External validity may be limited by selection bias.