Daniel Kelly1 and Sofia A. Vougioukalou2
(1)
Royal College of Nursing Chair of Nursing Research, School of Healthcare Sciences, Cardiff University, Research Hub, 13th Floor, Eastgate House Newport Road, Cardiff, CF 24 0AB, UK
(2)
School of Healthcare Sciences, Cardiff University Eastgate House, Newport Road, Cardiff CF 24 0AB, UK
Daniel Kelly
Email: kellydm@cardiff.ac.uk
31.1 Introduction
There are specific negative impacts to consider regarding the social and emotional development of children, teenagers, and young adults (TYA) diagnosed with cancer, which in turn further impact on their ability to form intimate and sexual relationships [1].
Childhood cancer may affect the development of sexual identity and later sexual functioning for a variety of reasons. Examples include social isolation, limited contact with others, parental overprotection, lack of opportunity for sexual expression and unsupervised time with peers, difficulties with body image following treatment, physiological damage to the gonads due to therapy, as well as other physical and emotional difficulties [2]. With a diagnosis of cancer, the chance for rebellion and experimentation with sexual activity is curtailed. Furthermore, intensive treatments such as chemotherapy and radiotherapy and the physical changes they induce may lead to a lasting negative impact on cancer survivors in later life [3].
TYA cancer survivors, especially if their body image is affected, are likely to experience feelings of hopelessness and anxiety over a potential loss of normality and dreams of a fulfilled adult life. Survivors of limb-sparing surgeries, for example, have reported struggling with sexual function, depressive symptoms, and poor self-perception [2].
This chapter explores some of the key aspects of cancer on intimacy, body image, and sexuality on younger age groups and discusses potential supportive solutions.
31.2 Impact
The impact of cancer, whether in childhood or adolescence, is multifaceted as it affects the survivors’ personal and mental health as well as their interactions with their peers and family in private, educational, and professional settings. Fatigue and impaired sexuality are examples of phenomena with a more indirect and secondary impact but at the same time seem to permeate every aspect of altered body image [4]. As well as the unexpected risk of mortality being introduced at such an early stage, there is also the unwelcome threat of appearing different from their peers. Side effects such as baldness, amputation, weight loss, and fatigue may lead to restricted independence and diminished social and sexual opportunities. Due to the age of the patients and their dependent relationship on their caregivers, pediatric oncologists may be inclined toward a paternalistic relationship with their TYA patients and avoid discussing issues such as sexuality, body image, and fertility [5].
31.2.1 Body Image
An illness-induced altered body image is often associated with a feeling of loss and, as a consequence, the survivor’s self-concept may be affected. Attractiveness plays a key role in self-esteem, and self-consciousness is heightened by the range of physical and emotional maturation at any given age. Young people with cancer tend to avoid or are less likely to establish intimate relationships as a result of low self-esteem [4]. TYAs agonize over their personal appearance and dislike being singled out or appearing odd. Weight gain, alopecia, acne, stunted growth, and mutilating surgery to the face and extremities are examples of adverse consequences that can be devastating to an adolescent’s self-image. In particular, hair loss has been frequently cited as a huge confidence of blow to the adolescent/young adult (especially the female) with cancer [5].
Other research with TYAs undergoing amputation or limb-sparing surgery revealed gender differences in relation to coping and that survivors of limb-sparing surgeries struggle more with sexual function, depressive symptoms, and poor self-perception compared to Van Nes rotationplasty and amputation survivors [2]. A systematic review of children and adolescents with cancer who have compromised body image was shown to have higher levels of anxiety, depression, and more behavioral problems. They also had worse emotional and social health-related quality-of-life (HRQOL) scores. However, adverse effects of cancer and treatment on body image were shown to be moderated by social support [6]. This is an important point for professionals to consider, as the young person is part of a relational network of family, peers, and professionals who can offer different types of support. Each network member has a different role to play in supporting the young person to think about their goals in a social, emotional, and sexual sense [7].
31.2.2 Fertility
Most TYAs have entertained the thought of becoming a parent, and it is therefore hard to imagine the effect of, for example, early menopause due to ovarian failure or orchiectomy. Although infertility does not always occur, it would be wise for professionals to suggest storage of sperm and ova if at all possible. This is a difficult subject which needs to be handled with sensitivity and tact as young people are likely to feel embarrassed at a time when they are discovering their personal feelings and their sexuality [8].
31.2.3 Relationships
Concerns around body image and fertility may hinder the ability of TYAs to form romantic and sexual relationships. A sample of 21 TYA testicular cancer survivors in the United States reported that embarrassment can lead to delays in care-seeking. A testicular cancer diagnosis makes young men feel different from others. Young men used the expression of feeling like “damaged goods.” As a result, making disclosure to potential partners was reported as difficult. Nevertheless, being in a relationship improved the survivors’ feelings of well-being and highlighted the risk that unpartnered survivors as a subgroup may face, particularly in terms of isolation and possible intervention or advice by health or other professionals [9].
Survivors of childhood cancer may also experience sexual problems. In a Dutch study of 60 childhood survivors, 41.4 % reported experiencing (almost) no sexual attraction, 27.6 % had never had sexual intercourse, 44.8 % were seldom/never satisfied with their sexual lives, and 23.3 % were seldom/never able to feel “really” female or male. Also, 44.2 % were seldom/never able to see themselves as sexually attractive toward others, and 18.4 % of the survivors felt a limitation in their sexual life due to their illness. The main reasons for reporting this feeling were: uncertainty about their own body, difficulty with expression of emotions, scars, and possible fertility problems [10]. These concerns can further contribute to disrupted sexual function in intimate relationships and suggest the need to be aware of the lasting impact of childhood cancer in later life. Again, a relational approach to advice may be helpful.
31.2.4 Intimacy
The risk to sexual function can also be symbolized in other ways during cancer treatment. For instance, the loss of menstruation may be seen as a highly significant loss for some young women. Intense embarrassment may also result from what would normally be private toileting activities, such as dealing with sudden diarrhea or emesis after chemotherapy. Such public embarrassments may be coupled with a lack of sexual experience due to prolonged periods of hospitalization that may result in resentment toward healthy peers who have been free to experiment and develop in this way. Furthermore, there are additional physical effects on nonreproductive organs that may impact on intimacy. For example, the effect of treatment on the rapidly dividing cells of the mucous membranes may cause stomatitis which may progress to dysphagia, halitosis, and infections such as candidiasis. The mouth is perhaps the most obvious means of sexual expression through kissing, smiling, and talking, and if this is compromised, young people can feel the core of their identity as sexual beings is being impacted, which is so crucial to their development [4].
A further important consideration is the promotion of intimacy and supportive personal relationships during the intensive phase of treatment when every aspect of the body is subjected to scrutiny by health professionals. The provision of privacy and space may be especially difficult in hospital settings, or may be easily overlooked [11]. In young men, the inability to control erections or nocturnal emissions may be embarrassing, especially as parents are often able to stay with their teens overnight. Allowing for social support and privacy may appear as conflicting priorities that need to be negotiated carefully.
Among a small cohort consisting of TYA testicular cancer survivors, 18 % reported being angered and/or saddened regarding changes in orgasm and the lack of normal ejaculation [12], although they also accepted sexual dysfunction as a necessary consequence of testicular cancer treatment and remained hopeful that the ejaculatory process would eventually return [13]. In a Dutch study of 32 young adults who survived bone cancer during childhood, almost half of the sample, who had undergone a Van Nes rotationplasty, expressed some limitation in initiating intimate relationships as a result of the rotationplasty, although about 64 % reported being sexually active in the past month [14]. These results indicate that sexual activity and satisfaction do not always correlate. Therefore, it would be advised not to make assumptions about young people’s sex lives but instead to focus on talking to them about their current experiences and information or support needs.
31.3 Summary
As the number of long-term survivors of cancer during childhood and adolescence increases, there will be increasing demand for attention to be paid to the supportive care needs of this population. Those include providing advice for relationships and sexuality within developmentally, socially, and culturally appropriate frameworks in order to assist the survivors’ transition into an adulthood with a satisfactory quality of life.
The literature on the psychosexual impact of cancer treatment in childhood and adolescence highlights the physical and emotional impact that treatment can have on body image, fertility, relationships, and intimacy. An altered body image through, for example, weight gain/loss, alopecia, acne, stunted growth, and mutilating surgery can contribute to anxiety, depression, and low self-esteem. Temporary or permanent loss of fertility can be a cause of private distress, and storage of sperm and ova should be suggested if possible. Loss of confidence may lead to difficulty in initiating romantic and sexual relationships, experiencing sexual attraction, and feeling satisfied within intimate relationships. Additional reported factors compromising TYA opportunities to explore relationships included altered toileting activity and compromised privacy.
As the TYA years represent a time of intense physical, cognitive, social, and emotional transition, the challenges that arise are unique from those faced by other age groups surviving cancer, and these challenges threaten quality-of-life outcomes throughout the relatively long period of survivorship. The challenge of developing effective psychosexual interventions for this age group may be magnified due to a number of complexities such as the wide range of ages included, diagnoses, treatments, level of previous sexual experience, and individual expectations. Unpartnered survivors may benefit most from interventions targeting increased social skills and self-presentation skills, as well as ways to approach cancer disclosure.
31.4 How Professionals Can Support Survivors and Seek Further Advice
Professionals could initially address whether sexual activity is a desired activity by the survivor, assess the experiences and the social context within which romantic and sexual activity could take place, and address hopes and ideas for a fulfilled adult life. A relational approach to such discussions may be helpful [7]. The rate at which sexual maturity is reached does not follow a fixed pattern, underlying further the need for individual assessment being at the heart of personalized cancer rehabilitation for younger patients. Furthermore, side effects also vary, and interventions need to be tailored to the survivors’ status across the continuum of physical outcomes.
Core components to any psychosexual intervention revolve around creating a space to talk about the impact of pain, anxiety, depression, and lack of desire on sexual (as well as nonsexual) relationships. Practitioners may use these symptoms and side effects of treatment as routes into conversations with their young patients about their views and expectations of romantic and/or intimate relationships. Recognizing that such conversations are different to, but compliment, the biomedical care which patients receive may also be helpful in marking a transition to different kinds of conversations.
Addressing issues of reproductive health in the adolescent/young adult with cancer should ideally be offered as a part of comprehensive pediatric and TYA cancer care. A US study, where 21 cancer survivors, aged 15–25 years, completed a psychosexual counseling intervention, showed that participation in the intervention increased cancer-specific knowledge regarding sexual issues, improved body image, lessened anxiety about sexual and romantic relationships, and decreased overall level of psychological distress [15]. However, these types of interventions often report difficulties in recruiting a large number of survivors, probably due to taboos associated with discussing intimacy with health care professionals and also negative associations with receiving mental health interventions. One way in which recruitment barriers may be overcome is to train doctors and nurses to deliver the intervention, rather than rely exclusively on mental health providers such as clinical psychologists. Another way to potentially increase recruitment could involve the creation of an internet-based version of these interventions, as young people are very familiar with using online platforms. In order for face-to-face or online interventions to lead to sustainable outcomes, they would need to also engage family members, partners, peers, school teachers, and employers, so that they would be able to further support the survivor and understand the physical and psychological impact that the treatment has incurred.
Finally, younger people will rely on professionals to acknowledge the impact that cancer will have on their lives, including the relational impact which may or may not include concerns about body image and sexual function. It would therefore be a key achievement for professionals to be able to open a dialogue and allow the young person to feel that their concerns will be heard and acted upon wherever possible.
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Online Sources
http://www.macmillan.org.uk/Cancerinformation/teensandyoungadults/Relationshipssexandfertility/Relationshipssexandfertility.aspx
https://www.teenagecancertrust.org/get-clued-up/fertility-and-cancer/
http://www.cancer.net/coping-and-emotions/managing-emotions/self-image-and-cancer