Through this qualitative study, we found that cancer and its treatment brought about profound challenges to the sexual wellbeing of cancer survivors living in settings with limited supportive care services. Changes in physical appearances and loss of childbearing ability following administration of cancer surgery and therapies negatively impacted participants’ self-confidence and incited psychological distress. The side effects of cancer, including loss of libido, and pain, often led to a decrease in quality of sexual relationships, which subsequently spurred further psychological stress and led to strained relationships with partners. Various adjustments were made to improve their sexual relationships including reprioritization of sex, use of sexual aids, employing other forms of intimacy, or reframing sex as an obligation. While the role of healthcare professionals was stressed as paramount in helping to address sexual wellbeing issues following cancer, this need was deemed as largely unmet.
Similar to findings from other settings, the female participants in this study narrated that they felt “incomplete” following the loss of their breasts or uterus [9–10]. This perceived loss of femininity was more common among women of Malay ethnicity and may be linked to the societal expectations of womanhood, in which the breasts and ability to conceive are often deemed as symbols of being a “complete woman” [11]. Conversely, men appeared to be relatively less affected by changes in their physical appearances. From the clinical perspective, while mastectomy and hysterectomy may be life-saving treatments, the socio-psychosexual effects experienced by women on losing the breast and ability to conceive should not be overlooked by healthcare professionals [10, 12]. As illustrated from this study, the lowered body image due to the removal of the breasts or uterus affected not only the patients’ self-esteem but also their relationship with their intimate partners.
Cancer survivors often report a decline in the quality of their sexual relationships, which are mainly attributed to the side effects of cancer and its treatment. Consistent with many studies, concerns on changes in sexual activities were raised by almost all participants in this study irrespective of cancer type, age, and gender [13–14]. Although it is conceivable that reproductive cancers such as prostate and gynaecological cancers are more likely to be associated with sexual dysfunction due to hormonal imbalances [15–16], our study findings suggest that psychosexual care should not only be limited to a selected subgroup of patients but also extended to all patients with cancers. Although a prior study focussing on women with breast cancer in Malaysia had shown that when compared to other survivorship care needs, sexual functioning tended to be rated as a lower priority [17], the findings does not in any way preclude the importance of sexual wellbeing. The current study in fact highlights that sexual wellbeing remains an important concern for cancer patients including in those living in multiethnic, multicultural settings.
Several adjustment strategies were adopted by cancer patients to improve their sexual relationships. At the individual level, approaches to ensure sexual well-being included acceptance and adjustment to the new normal such as switching from penetrative sexual intercourse to other avenues such as physical touch and hugs, as well as adoption of medical aids. The need for open and honest communication between partners was also frequently brought up. Interestingly, this study found that psychological distress was not only experienced by the cancer patients but also their partners, who were described as “being afraid of hurting them” or “scared” to look at the surgical scars. Alarmingly, there were misconceptions held by the participants’ intimate partners including notions that sexual activities are not safe for cancer patients, may worsen cancer and that cancer is contagious and may spread through sexual activities. Professional counsellors thus play a crucial role to not only facilitate renegotiation of sexual practices between cancer patients and their partners but also importantly to dispel myths regarding cancer and sex [18]. The adoption of couple-focused sex therapy interventions, adapted to the local socio-cultural beliefs, should also be implemented as they have been shown to be beneficial in fostering communication between couples, managing mismatched expectations, and improve the quality and satisfaction with sexual relationships in both the cancer patients and their partners [19].
In this multi-ethnic, middle-income country where sexual health is largely left undiscussed, we found a major unmet need for clinicians to counsel patients and their partners on the potential impact of cancer and its treatment on patients’ sexual wellbeing. Healthcare professionals play an important role in the provision of reassurance that there is no medical contra-indication to sexual activities during and after cancer therapy, and that sex after cancer is safe as long as both parties are ready for it [18, 20–21]. Besides prescribing medications and medical aids, referring patients to support groups may also be an effective intervention to provide emotional support to patients with sexual difficulties.
In this conservative settings, it may also be necessary for healthcare professionals to proactively initiate conversations on sexual health with cancer patients and their partners during routine clinical encounters. The mismatch in communication expectations between patients and their clinicians can occur when patients assume that their clinicians would inform them about the sexual side effects associated with cancer and its management, while the clinicians assume that patients would initiate discussions about sexual health if they experienced such issues [2, 22]. While oncologists generally agree that sexual counselling is important, many are not able to translate this into routine practice, citing barriers such as insufficient knowledge, lack of training, lack of time and fear of over involvement in patients’ personal lives [23]. Training programs for healthcare providers to have open and honest discussions regarding sexual concerns of their patients should be integrated and implemented into routine clinical care [24]. Designing a standardized and validated sexual needs assessment tools may have the potential to aid clinicians in identifying patients with dire sexual health needs, and thus manage their concerns and provide appropriate referrals in a timely and appropriate manner [25].