Dare to talk about sex - a challenge for nurses in cancer care
The Swedish Oncology Nursing Society ran an education session in May entitled: Dare to talk about sex - a challenge for nurses in cancer care. This event was funded by a grant given to the society for its involvement in ECCO 2012 in Stockholm.
The education session gave the participating nurses an opportunity to listen to and discuss with experienced nurses who, through their research and/or clinical work, have become involved in what happens to the cancer patient’s sexuality during illness and treatment. In the group discussions that followed, the participants were given the opportunity to share experiences and develop their skills in talking about sexuality with cancer patients. The half-day session finished with an annual meeting and subsequent mingle.
Below follows the invited lecturers’ summaries of their presentations.
‘Breast cancer before 50 - a changing sexuality’
Kicki Klaesson, PhD, Oncology Specialist Nurse, Skaraborg Hospital, Lidköping and University of Skövde.
For most women, the consequences of a breast cancer diagnosis and its treatment could influence the erotic part of their sexuality negatively. The feeling of a changed body results in a changed view of the world, i.e. how the women perceive themselves as sexual individuals in interaction with others could affect their self-image. Losing a breast or part of a breast affects the self-image.
Furthermore, weight gain is common as well as sensing that the body is feeling older and more rigid. This could result in feeling less attractive as a woman. The women may be able to regain their sexual self-esteem when they manage to get the ‘inside’, how to perceive the body, and the ‘outside’, the way the body looks, to merge into an acceptance of their own body.
The women who have entered into treatment-induced menopause are especially vulnerable, as the hormonal effects become much greater for them than for the older woman. Studies have shown that about half of all women undergoing chemotherapy experience disruption in their sexual response cycle, either for a short period of time or permanently. There are also a few studies suggesting that the orgasm experience becomes weaker and in some cases even painful. Research on whether these changes recover or not over time is still lacking.
Kiki Klaesson’s two studies showed that women felt ‘wing clipped’ in their sexual self-esteem and the ability to experience and express their sexuality was limited. They felt like an ‘outsider’ when they couldn’t meet the existing ideal of a woman. The breast nurse has an important role to play in supporting the woman in all the bodily changes that occur, but also to demonstrate the ability to reclaim femininity and sexual self-esteem. Nurses in cancer care should regularly ask the patient how she feels as a woman and how the disease and the treatments have affected her sexuality. This requires that the nurses have previously thought about how they feel about the topic.
‘Sexual function after treatment of prostate cancer - does it exist?’
Per Fransson, PhD, Associate professor, Oncology Specialist Nurse, Umeå University and Oncology Clinic, Northern University Hospital, Sweden
Prostate cancer (PC) is the most common cancer in Sweden, with more than 9,600 new cases in 2011. Average age at diagnosis is around 66 years. The most common form of treatment is radical prostatectomy (RP), but radiation therapy and hormonal therapy are also common. Active monitoring is also an option depending on the extent of the tumour and other factors such as expected survival.
All types of treatments, however, entail an increased risk of various degrees of side effects such as incontinence, faecal leakage and erectile dysfunction (ED; impotence). Decreased desire for sexual activity and impaired erectile function also increase with age, but other factors, such as diabetes, cardiovascular disease, depression and social factors, affect erectile function too. About 50% of men aged 70 are sexually active and 25% are active at 85 years.
Five per cent of men aged 20-30 years have ED and 60% at 70-79 years of age. The likelihood of maintaining an erection at an age below 66 after prostate cancer partly depends on the type of therapy the patient has been exposed to; for brachytherapy it is 76%, for external radiotherapy 74%, nerve-sparing prostatectomy 51% and non-nerve-sparing prostatectomy 20%.
Many factors affect the chance of maintaining erectile function after prostate cancer treatment and one of them is the man’s age. Another important factor is, of course, the level of sexual activity prior to treatment, which also means that it is important to inform the patient about trying to maintain activity during and after treatment if the man wants to keep his erection ability.
Lenita Lundin, Oncology Specialist Nurse, trained in sex and cancer, as well as in interview techniques from the Venus Clinic and the Cancer Enlightenment, spoke initially, as background and repetition, about the side effects that may occur after treatment of pelvic cancer in women. The Venus Clinic is a nurse-led clinic that belongs to the Unit of Cancer Rehabilitation at the Oncology Clinic, Stockholm. The clinic started off as a healthcare development project in 2011 and from 2013 it is a part of the care offered by the Oncology Clinic. It is a place where women with pelvic cancer receive information and advice about sexuality and cancer. The women get an opportunity to bring up the topics that are important to them. In order to prevent vaginal adhesions, information is provided and vaginal dilators are tested individually.
Gail Dunberger, PhD, Oncology Specialist Nurse, shared her clinical experience from a nurse-led clinic with focus on sexual dysfunction after pelvic cancer. The nurse-led rehabilitation unit at Sahlgrenska University Hospital in Gothenburg is focusing on long-term physical symptoms and sexual health after pelvic cancer. The clinic is managed by an oncology specialist nurse with a PhD in oncology and with extensive previous training in radiotherapy and psychosocial oncology. There is also a nurse with a master’s degree in oncology who specialises in sexology. The two nurses work independently with medication management, sexual counselling, lifestyle interventions and patient education. Women with vaginal stenosis after pelvic radiotherapy are offered a vaginal dilator along with thorough information. The belief is that early sexual rehabilitation such as topical oestrogen, vaginal dilation and sexual counselling may help pelvic cancer survivors regain physical and sexual health.
‘Affected sexuality in patients treated for malignant blood diseases’
Cecilia Olsson, PhD-student, Oncology Specialist Nurse, Karlstad University, Sweden
Findings from two studies on patients with malignant blood diseases who have been treated with chemoimmunotherapy were presented. Both studies included male and female patients who were between 45 and 81 years of age.
In the first study, 12 patients were individually interviewed twice, two to eight months after treatment. The patients in this study experienced sexual problems during and after treatment due to affected strength, sexual desire and body image. However, when the disease and the side effects were experienced as severe, sexual thoughts and interest were overshadowed and the need and wish for support related to this issue was very low. It is important to note that some patients expressed that pre- or post-treatment information might have been helpful.
In the second study, 32 patients were monitored during one year. At this session, preliminary data from the baseline occasion and the first follow-up, one month after completion of treatment, were presented. In this study, patients’ sexuality was affected during treatment and up to one month after completed treatment. Patients’ HRQoL (health-related quality of life) was also affected. This highlights that sexuality, as a part of HRQoL, still needs to be considered when patients are older and fertility issues are of less importance.
Cancer care today acknowledges that cancer follow-up should address psychosocial support in which sexuality is an important area. Therefore, it is imperative that cancer care is organised in a patient-centred way, with adequate time for nurses to provide continuity in the nurse-patient relation and to provide supportive care during cancer rehabilitation. An important task for nurses in cancer care is the timely identification of patients, regardless of sex and age, who experience sexual problems and need information and support.
This report was prepared by Cecilia Olsson of the Swedish Oncology Nursing Society.
The language was reviewed by Maria Souza Nilsson of Karlstad University.