Type of sexual difficulty
Men 16–24 years
Men 25–34 years
Women 16–24 years
Women 25–34 years
Lacked interest in having sex
11.5 %
14.5 %
24.8 %
31.9 %
Lacked enjoyment in sex
5.4 %
6.7 %
11.3 %
13.2 %
Felt anxious during sex
5.7 %
6.3 %
8.2 %
8.2 %
Felt no excitement/arousal during sex
3.3 %
4.3 %
8.6 %
8.0 %
Difficulty in reaching climax
9.2 %
9.8 %
21.0 %
17.2 %
Reached climax more quickly than preferred
16.5 %
19.1 %
3.8 %
2.5 %
Trouble getting/keeping an erection
7.6 %
7.9 %
N/A
N/A
Uncomfortable dry vagina
N/A
N/A
9.4 %
9.7 %
Felt physical pain as a result of sex
1.8 %
1.7 %
9.5 %
8.0 %
Experienced 1 or more of these problems
36.2 %
39.7 %
46.5 %
48.5 %
Experienced 2 or more of these problems
13.6 %
14.9 %
23.0 %
23.6 %
As can be seen from this summary, for men the most common sexual difficulties reported were:
Rapid ejaculation (16.5 % and 19.1 %)
Lack of sexual interest (11.5 % and 14.5 %)
Difficulty in reaching climax (9.2 % and 9.8 %)
The prevalence of erectile difficulties reported by this younger age group was low at 7.8 % compared to a rate of 12.9 % in the overall adult male sample [39].
For women, the most common sexual difficulties reported were:
Lack of sexual interest (24.8 % and 31.9 %)
Difficulty reaching climax (21 % and 17.2 %)
Lack of sexual enjoyment (11.3 % and 13.2 %)
The number of younger women reporting lack of sexual enjoyment may reflect those who experienced vaginal dryness (9.6 %) and sexual pain (8.8 %) or who lacked excitement or arousal associated with sexual contact (8.3 %). Table 24.1 also illustrates the fact that even in younger adult populations, it is not unusual to find more than one sexual difficulty affecting individuals at any given time. This finding highlights the interdependent relationship between sexual difficulties that affect different phases of the human sexual response simultaneously [38], hence the clinical importance of thorough assessment and integrated management.
As discussed previously, Fig. 24.1 illustrates the complex interplay of anatomical, physiological, psychological and relationship (interpersonal) mechanisms, any or all of which can be adversely affected by illness and treatment. Hence, the assessment and management of common treatment-induced sexual difficulties in this age group require integration of biomedical, psychological and psychosexual approaches in response to the multifactorial and multiphase impact of sexual changes encountered in clinical practice [42].
Fig. 24.1
Impact of cancer and its treatment on phases of the human sexual response
24.5 The Global Impact of a Cancer Diagnosis on Sexuality and Sexual Function
A diagnosis of cancer compounds the complexities of AYA development. Sexual health, function, interpersonal relationships and self-image (physical and psychological) are all factors that have an impact on the development of self-esteem during the transition periods into and throughout early adulthood [43, 44]. Adolescent and young adults with a cancer diagnosis report a substantially reduced quality of life compared to their peers without a cancer diagnosis [34], particularly in areas of emotional and social functioning [45, 46]. Recent studies have begun to reveal the complexity of the effects cancer and its treatment can have on AYA sexuality beyond sexual functioning. Young adults with cancer may have problems with body image and poorer sexual self-concept and adjustments compared with healthy peers [47]. Common cancer treatments (chemotherapy, radiotherapy and surgery) impinge on AYA physiological, emotional, psychological and sexual well-being [48, 49] and also heighten areas of distress like pain, fatigue, depression and anxiety [50]. In their study exploring the psychosocial impact of cancer on newly diagnosed AYA cancer patients, Bellizzi et al. [51] found 40.4 % 15–20 year olds reported cancer had a negative impact on sexual function/intimate relationships. Although the cancer experience may disrupt, delay and complicate the process of sexual development it does not always bring it to a halt; sexual identities, desires and practices continue, and relationships show resilience [52].
24.6 Promoting Sexual Health
Open and frank discussions about sexuality, sexual practices and intimacy are relevant and appropriate areas of psychosocial assessment when working with AYA cancer patients [53]. They are areas that should be revisited not only as the cancer pathway progresses (including palliative and end of life care) but also as the AYA matures during treatment and into survivorship; not all sexual behaviour during AYA is risky, but it is known to be a time of sexual experimentation. Adolescents and young adults need information and support to understand how their sexual behaviour (risky or otherwise) may need to be modified as a result of either their cancer or more likely its treatment.
Contraceptive and sexual health needs of AYA undergoing cancer therapy should be addressed as a separate issue from fertility preservation. The median age for first sexual intercourse is now 16 years in most industrialised countries, and over 50 % of young adults remain fertile after their cancer treatment [54, 55]. Provision of verbal, written, age-appropriate and relevant information should be freely available to AYA cancer patients in a variety of mediums and languages. Many younger patients may find it too confronting or personal to discuss this topic, so the response of professionals should be sensitive, non-judgemental and tailored to individual need of the patient. It is, however, important that professionals working in AYA cancer care receive adequate training on the potential legal, ethical, moral and boundary management issues they may encounter when dealing with sexual health concerns.
Removal from the context of their normal social and peer network by hospitalisation and decline in physical ability may impact on developing sexuality [44]. The loss of independence, reduced autonomy and forced dependence on parents and others for care and social and financial support reduce self-esteem and self-confidence [56]. The physical side effects of cancer can compound these losses as AYA lose their physical image of self and an alteration in the perception of how others see them. These concepts may individually or in combination potentially impair relationship formation/function, decrease dating opportunities and alter sexual function. Global effects on functional role may also delay education/training, limit lifestyle options and compromise future goals, i.e. partnerships and parenthood. For older adolescents and early young adults, cancer may not only limit experimentation with different sexual partners but also the experience of positive, sexually arousing, intimate sexual relationships that are necessary in order to build sexual self-esteem and confidence [57–59]. Studies show that AYA with cancer differ significantly from peers by reporting lower sexual experience, lower self-esteem and how the fear of being rejected may delay sexual experimentation, dating and consequently the formation of meaningful couple and sexual relationships [57, 60, 61].
After cancer, dating and relationship formation may also be affected by reluctance or fear of disclosure regarding their cancer history [62], body image and sexual difficulties caused by cancer. These can be caused by a combination of the physical impact of cancer, the side effects of treatment and psychological issues raised by or distinct from cancer. Sexual dysfunction is one of the most common and distressing consequences of cancer treatment [63, 64]. Although some sexual-related adverse effects are short term, many survivors face long-term effects such as treatment-induced menopause, altered gonadal function and altered body image [60].
Both experienced and novice professionals may experience confusion and dilemmas when faced with certain sexual health issues; adequate supervision and support for staff should be considered when planning such services. One of the most challenging areas for professionals can be responding to concerns or disclosure of abuse during work with AYA and their sexual health. Adolescents and young adults may experience a broad range of neglect or abuse intentionally or by omission from parents/carers, other adults, organisations or their intimate partners. Healthy relationships (regardless of sexual orientation) require respect, trust, communication and responsiveness between those involved. Many young people have not been taught or witnessed these skills, especially if they have grown up in a home, community or society where violence and exploitation occurs. Intimate partner violence (IPV) may include psychological or emotional violence, stalking, physical violence and sexual violence such as non-consensual sexual contact and rape [65], all of which can have a negative effect on health throughout life [66]. Likewise non-partner sexual abuse/violence should be considered. In a world where the global movement of people across and within countries can no longer be simply described as ‘business or pleasure’ and local populations become increasingly diverse, professionals need to be alert to concepts such as human trafficking and female genital mutilation (FGM).
24.7 Recognising and Responding to Sexual Abuse
Human trafficking is the recruitment and movement (by coercion, deception or abuse of vulnerability) across and within borders for the purposes of exploitation through forced sex work, domestic servitude and low-paid labor and it affects an estimated 2.5 million people worldwide [67, 68]. As this chapter is about sexual health, it may be natural to focus on young people trafficked for sex work; however, those trafficked into domestic or other work often experience sexual abuse and violence [67]. Healthcare providers are one of the few professionals likely to interact with people who have been trafficked [69]. All professionals working with AYA should receive training to recognise those who have been trafficked and on how to assess and respond to their social needs as well as their medical needs. The WHO defines FGM as procedures that involve partial or total removal of the external female genitalia or other injuries to the female genital organs for non-medical reasons. It is estimated that >125 million girls and women alive today have been cut in the 29 countries in Africa and Middle East where FGM is concentrated, most in childhood but some in adolescence or adulthood [70]. There is no medical benefit for FGM, and it is banned in many countries across the world; those working with young women with cancer should be aware of relevant processes and policies if they think young women are at risk of FGM or have had FGM and wish to seek psychological or medical support as a result.
24.8 The Impact of Cancer Treatments on Sexuality and Sexual Function
24.8.1 Altered Body Image
Physical reminders of cancer and its treatment can result in concerns regarding appearance and self-esteem, which in turn impact on self-confidence [57]. Changes in body image from cancer treatments constitute a major source of concern and distress for AYA [53, 54, 57]. These include hair loss, weight change and disfigurements such as scarring, stretch marks, stomas and the loss or alteration of a body part (e.g. breast or testicle) [57, 60]. Alopecia (body hair as well as cranial hair) can be the most distressing side effects of chemotherapy that may affect body image in both women and men [57]. Weight changes, striae, loss of fertility and other alterations to body image may impede sexual desire and arousal [71, 72]; the resulting loss of self-esteem and confidence may interfere with the normal tasks of sexual development.
Any visible physical changes, no matter how small, may significantly affect the development of sexual self-esteem, including delayed sexual maturation and formation of meaningful couple relationships [57, 58, 73]. Altered body/self-image has been shown to not only affect decision-making about dating but also AYA participation in social events, which provide opportunities to form relationships [62] including the ability to form intimate or romantic relationships as is the norm for this age group [59, 60]. One study [73] reported that 17 % of testicular cancer survivors diagnosed as an AYA reported a negative change in body image following diagnosis and treatment for their cancer. These results were significantly correlated with other reported changes of sexual function, and similar findings were reported in more recent work looking at perceptions of masculinity and self-image in this group [61].
However, cancer treatment does not always have a negative impact on survivors, and a recent study of male survivors of bone cancer in childhood who had amputations demonstrated a higher level of sexual functioning than in the bone cancer survivors who had limb salvage surgery [74–76]. These findings demonstrate the resiliency reported for some, but not all, AYA with cancer [77, 78].
24.8.2 Surgery
24.8.2.1 Colorectal Cancer
Though still very rare, the global incidence of colorectal cancer in adults <40 years of age is rising [79, 80]. The nature of surgery and subsequent multimodal adjuvant treatments can give rise to significant short- and long-term effects on both sexual function and sexuality. The presence of a stoma or altered bowel function may not only lead to changes in body image but also can present challenges of disclosure to new partners or sexual adjustment/renegotiation with established sexual partners. Though no literature specifically relating to AYA with colorectal cancer could be found, problems related to the following areas of sexual function have been reported in both sexes: reduced sexual desire and diminished orgasm, and in women, vaginal dryness and dyspareunia [81]. In men, although radiotherapy and chemotherapy contribute, surgical nerve damage is the main cause of sexual dysfunction, most often erectile and ejaculatory dysfunction [81, 82].
24.8.2.2 Pelvic Cancers (Women)
The sudden loss of oestrogen, progesterone and other androgens following bilateral oopherectomy brings about more severe and prolonged menopausal symptoms than seen in the natural menopause [83]. Little difference has been found in sexual function in research with age-matched cohorts experiencing natural or surgical menopause [84]. However for younger women, the sudden loss of sexual desire, vaginal dryness, dyspareunia and poor arousal and orgasm (and infertility) may lead to impaired sexual satisfaction, at a time normally equated with fertility, sexuality, partnerships and parenthood. Such a rapid change in reproductive and sexual health may have a significant effect on the sense of self as a sexual being beyond intercourse – women following gynae-oncological surgery report less kissing and sexual fantasy than their healthy peers [85].
Following such surgery, vaginal shortening may lead to dyspareunia. A qualitative study of the quality of life for women 1-10 years after radical trachelectomy for early stage cervical cancer [86] found sexual function was not a long-term problem for most women. However, some could feel the cerclage (stitch) during intercourse and although most developed techniques to manage this, younger single women felt particularly vulnerable [86].
24.8.2.3 Breast Cancer
Fewer than 5 % of all breast cancers diagnosed in the USA occur in women <40 years of age [87]. For many women, breast cancer surgery is the initial treatment; this may be breast-conserving surgery (lumpectomy) and axillary node dissection or a modified radical mastectomy (MRM) with or without immediate reconstruction. Though rare, some women in this age group may have a bilateral mastectomy; those who request this surgery are typically women with a strong familial history or those <45 years old when diagnosed [88]. Studies of the association between type of surgery, body image and sexual functioning have yielded inconsistent results, often due to the multimodal treatment used in this cohort. It is known that young women who receive chemotherapy following surgery report worse sexual functioning than women who do not [89, 90].
However, women may have different feelings about their breast and its changes following a cancer diagnosis and treatment; these may affect self- and body image before and following surgery. For example, some women may see surgery as a means of addressing cancer and the start of recovery [91], whilst for women in some cultures, a single breast can profoundly alter self and sexual identity [92]. Evidence shows that, overall, women with a better body image prior to diagnosis have higher sexual satisfaction scores than women with a worse pre-treatment body image; the health-related quality of life (HRQoL) impact of surgery also seems to be higher in the first year post-diagnosis, improving hereafter [90, 91].
In their work on sexuality and body image across surgical groups, Yurek et al. [93] found that women who had a mastectomy and breast reconstruction reported that their immediate post-surgery sexual behaviour and sexual responses were disrupted significantly more so than women receiving breast-conserving surgery or mastectomy without reconstruction. Moreover, their data suggested that reconstruction achieved no reduction in body change stress, at least in the early post-surgical period. Some women reported significant situational distress and avoidant behaviours, i.e. avoiding looking at their chest and changes in behaviour towards their sexual partner; Yurek et al.[93] suggested that those women with negative sexual self-views were more apt to engage in lower levels of sexual activity, have difficulties with their sexual responsiveness and are vulnerable to heightened body change stress. Newer oncoplastic surgery techniques promise better overall cosmetic results [94] and further research into sexuality and self-identity is warranted.
24.8.3 Head and Neck Surgery
Traditionally oropharyngeal squamous cell carcinomas have been equated with older adults; however, largely due to HPV-related cancers, increasing numbers of younger patients who lack traditional risk factors are being diagnosed [95]. These patients require appropriate evaluation, counselling and treatment to ensure cure rates and lessen treatment-related side effects [95]. Potentially disfiguring surgery to the head and neck not only undermines a young adult’s perception of themselves as a sexual being but may also alter their ability to communicate and express themselves to partners and others thus reducing relationship formation and relationship maintenance.
24.8.4 Neurosurgery
In a recent study of patients with diffuse low-grade glioma (DLGG), a tumour that often affects young adults [96], 50 % of participants reported lower sexual function and satisfaction following surgery in addition to issues related to cognition, balance, communication, body image, seizures and mood disturbance. Few patients spontaneously disclosed these issues to their healthcare team [96].
24.8.5 Bone Cancers
The nature of bone cancer treatment and its potential implications for physical disability, cancer treatment affects and the dual psychosocial impact make it unique in the context of sexuality and sexual function. The physicality of sex following amputation requires relearning how to have sex and may involve trying different positions and the use of supports, i.e. pillows to help with positioning and balance. Others find wearing prosthesis helps with position and balance. Pain was reported as distracting during sex and may reduce sexual desire [97]. For the sexual partners of adolescents and young adults, their partner’s amputation can have an impact on their sexual life too. Verschuern [98] study of partners found that the patient’s amputation changed their sexual functioning and sexual well-being (not always for the worst) and that most couples resolved issues themselves through communication, acceptance and practical adjustment.
Roberts [74] found that patients’ quality of life was related to the functionality of the limb regardless of the type of surgery. Barrera et al. [75, 76] noted that patients with limb salvage surgery also had issues with sexual function as well as self-esteem, with young women and young adults being at particular risk.
24.8.6 Testicular Cancer
Cancer in a male organ that is highly associated with perceptions of masculinity, attractiveness, sexual function, fertility and romantic relationships [59] can have a significant effect on young men at a key point in their identity development. Impaired sexual function appears to vary by treatment regimen and histological subtype; survivors of testicular germ cell tumours report greater impairment and/or dysfunction compared with controls [99]. Sexual dysfunction varies by treatment modality too; chemotherapy and surgery show a greater risk of decreased libido or ejaculatory dysfunction; radiotherapy and surgery are more closely associated with erectile dysfunction. Additionally, those with a non-seminoma histological subtype note a greater risk of erectile dysfunction and ejaculatory dysfunction [59].
A single orchiectomy (if the remaining testicle is functional) does not alter physical sexual function and seldom interferes with fertility. However, surgery and the presence of a prosthesis may alter body image and perceptions of masculinity. In rare cases where both testicles are removed, erectile dysfunction will occur due to lack of testosterone. Surgery to remove the retroperitoneal lymph nodes (RPLND) does not affect men’s ability to have an erection or orgasm. However the consequences of surgery can cause infertility. In the past nerves controlling ejaculation were cut during surgery, without these the bladder neck does not close during ejaculation and sperm enters the bladder (retrograde ejaculation). Contemporary nerve-sparing RPLND techniques prevent this from happening, and fertility is often preserved and ejaculation normal.
Survivors reported that overall sexual interest, activity, enjoyment and function had changed very little or not at all [59]. Men in a committed relationship at the time of diagnosis describe improved physical and emotional adjustment to the cancer experience, often with increased closeness to their partner [58]. Those unpartnered at the time of diagnosis worry about how the testicular cancer may affect their future relationships [59]. Therefore being single at diagnosis appears to represent a vulnerability that remains even when survivors form a relationship after treatment completion.
24.8.7 Systematic Anticancer Drugs
24.8.7.1 Cytotoxic Drugs
Most of the information relating to the effects of cytotoxic drugs on sexuality and sexual function refer to women with breast or gynaecological cancer and men with prostate cancer or testicular cancer. Less is known about how the use of cytotoxic drugs in the treatment of other types of cancers affecting young adults effect sexuality. Systemic anticancer therapy impacts on sexuality and sexual functioning in different ways (Table 24.2). Treatment with cytotoxic drugs is often associated with loss of desire and decreased frequency of intercourse for both men and women [71] due to the psychological impact of body image as discussed earlier in this chapter.
Table 24.2
Applying the side effects of systemic anticancer drugs to sexuality
Affect | Gender | Causative factors |
---|---|---|
Altered sexuality related to body image and sexual desire | Both | Alopecia |
Nausea/vomiting | ||
Fatigue | ||
Reduced libido | ||
Mood changes, anxiety, depression | ||
Weight change | ||
Acne | ||
Striae | ||
Bloating Peripheral neuropathy | ||
Altered sexual arousal | Female | Dryness of mucosa (vagina) |
Atrophy (vagina) | ||
Inflammation of mucosa (vagina) | ||
Altered sexual arousal & ejaculation | Male | Retrograde ejaculation |
Erectile dysfunction |
The type, duration, cumulative dose and the combination of the cytotoxic drugs/modalities used influence the effect on sexuality and sexual function in both sexes. The acute physical side effects of cytotoxic drugs e.g. nausea, vomiting, fatigue, malaise can leave little energy for sex or relationships. Sexual desire most often returns as the acute impact of cytotoxic drugs lessens. However, the recovery period between cycles of treatment may be short; sexual interest might only just be returning as the next cycle of treatment starts. Once cytotoxic therapy is completed and the acute side effects diminish, sexual desire often returns to previous levels.
For women, one of the most significant factors affecting sexuality after chemotherapy is the loss of ovarian function [100, 101]. Women whose combination chemotherapy leads to permanent ovarian failure appear to be at higher risk of sexual problems than those who continue to menstruate or whose menses are temporarily interrupted [101]. The risk of permanent ovarian failure increases with the woman’s age, especially for women over age 35, and with alkylating drugs and higher total doses of chemotherapy [102]. In premenopausal women, chemotherapy-induced ovarian failure can cause vaginal dryness and thinning of the vaginal mucosa leading to dyspareunia and bleeding on penetration or withdrawal [100]. Peripheral neuropathy may cause vaginal pain, loss of sensation and numbness – altering arousal and decreasing the ability to reach orgasm [103]. Cytotoxic drugs that irritate mucous membranes in the body will do so to the mucosal lining of the vagina, causing dryness and inflammation.
For men, cytotoxic drugs rarely cause erectile dysfunction [102]; some drugs may cause nerve damage that affects erectile function, but this most often returns to pretreatment levels, unless function is affected by other treatment modalities. Hypogonadism and damage to pelvic nerves may lead to sexual dysfunction after intensive chemotherapy [102], so hormone replacement may be necessary to restore sexual function. More rarely, neurotoxic cytotoxic drugs may interfere with ejaculation, possibly due to damage to autonomic nerves involved in the contractions of the prostate, seminal vesicles and bladder neck [104].
All those who remain sexually active during treatment should be advised to take precautions to protect themselves from sexually transmitted infections if treatment lowers their immune system. Likewise advice for avoiding sexual behaviours that may cause trauma, i.e. anal penetration, should be avoided for those with platelet suppression. If using sex toys or other objects for penetrative stimulation, AYA should be advised regarding issues of hygiene to prevent infection and trauma which may necessitate changing practices, e.g. reducing the size of vibrators, avoiding vaginal or anal penetration with other objects, considering condom use on sex toys that may be shared between partners and taking precautions when having oral sex. Lastly due to a lowered immune system, young women need to be aware that they may be prone to vaginal candida infections and both sexes with a history of anogenital warts aware they may have a recurrence [105].
24.8.8 Biological Targeted Therapies
Small molecule inhibitors or monoclonal antibodies are increasingly used in the treatment of AYA cancer. A key difference between cytotoxic drugs and biological targeted therapies is that the former are designed to kill all cancer cells during intense courses of treatment, whereas the latter are often cytostatic and must be given continuously for months or years [106]. Studies of the effects of these agents on sexuality and sexual function could not be found, and work investigating the effects these agents have on fertility is limited. The broader side effects of therapy, e.g. flu-like symptoms, dizziness, nausea, vomiting, muscle or joint aches, fatigue, skin changes and altered mood, should be noted as these are likely to affect AYA’s sexuality. The longevity of treatment may result in a prolonged effect that as yet is unreported in the literature.
24.8.9 Radiotherapy
The effect of radiotherapy on AYA sexuality is dependent on the site, dose and volume of the treated area. Acute effects relate to damage to tissues with rapidly dividing cells notably the skin, hair follicles and mucosa – applying how these relate to sexuality and sexual function requires an individual assessment and approach to intervention [81, 82]. The effects of radiotherapy can be long lasting and significant [34, 82, 102].
Young adults may receive pelvic irradiation as adjuvant treatment for their cancer. Complications affecting sexuality may be acute, i.e. fatigue, malaise, diarrhoea, skin changes or long term and permanent organ, blood vessel and nerve-related, and the source for potential psychosexual late effects both in males and females.
The accumulated radiation dose to the pelvic organs is critical for acute bowel, bladder and genital toxicity [106]. Fibrotic changes and small-vessel injury in and around the prostate gland may cause ejaculatory dysfunction and erectile dysfunction [102]. However, the aetiology of erectile dysfunction, for example, in colorectal cancer patients, is believed to be similar to that of patients treated for prostate cancer [107]. Radiotherapy for testicular cancer has been reported to be associated with decreased testosterone production and vascular damage, decreasing sperm counts and possibly causing erectile dysfunction [99].
In women, sexual dysfunction following pelvic radiation is suggested to be associated with both multiple organic changes and psychological issues [107]. Women report a feeling of lack of femininity, sexual attractiveness and confidence besides being distressed by vaginal bleeding, vaginal pain, vaginal dryness and decreased vaginal elasticity, resulting in fear of sex and less sexual enjoyment [100]. The rapid cell turnover of the vaginal and vulva epithelium makes it very sensitive to the effects of radiation [100, 104]. Severe acute mucosal erythema and desquamation are often present but are normally resolved within 2–3 months after radiotherapy. In the longer term, vaginal wall thinning, adhesions, atrophy and fibrosis may occur and followed by decreased vaginal elasticity, vaginal lubrication, narrowing, shortening leading to dyspareunia and delayed or reduced orgasm [100]. Both sexes may experience loss of or reduced libido.
24.8.10 Human Stem Cell Transplantation (HSCT)
Conditioning regimes prior to HSCT often include alkylating agents and/or total body irradiation (TBI). Total body irradiation is toxic to gonadal function and can damage the function of the hypothalamic-pituitary-gonadal axis, cause genital sensitivity and atrophy, impair testosterone production for men (at least for the first year) and induce ovarian failure in woman [108].
Sexual problems in men may also be a result of gonadal and cavernosal arterial insufficiency resulting in lower sexual desire, arousal and penile vessel scarring and adhesions may lead to erectile dysfunction.
If the transplant is allogeneic, AYA are at risk of graft versus host disease (GVHD). Chronic GVHD may manifest anywhere in the body; for women, vaginal mucosal tissues are particularly susceptible to vulvovaginal GVHD, and it has been reported in 25–49 % of stem cell transplant survivors [109]. Vulvar symptoms can occur first: median 7–10 months post-transplant with vaginal disease occurring possibly years later. Vulvovaginal GVHD causes pain, vulva and/or vaginal dryness, burning, pruritus and long-term vaginal fibrosis, all of which can affect intimacy, sexual function and quality of life and may be compounded by concurrent disruption to ovarian function. Therefore, vulva/vaginal GVHD is often delayed or misdiagnosed ovarian failure [109].
24.9 Clinical Assessment of Sexual Consequences of Cancer and Its Treatment
Health professionals and patients alike continue to experience embarrassment in talking about the sexual consequences of treatment, resulting in a tendency to avoid such discussions in medical follow-up consultations [53, 101, 102, 113–115]. The ability to establish a discussion about how treatment may impact on the sexual function and confidence of a teenager or young adult may prove more challenging than discussions with older adults due to the developmental stage of the young person where they may not have established their sense of sexual identity, sexual self-esteem or confidence within the context of what are often transient/evolving relationships [25, 53].
Aubin and Perez [116] propose that clinical assessment of treatment-induced sexual concerns in this age group benefits from inclusion of information from the clinical interview, medical records and self-report questionnaires (PROMS), suggesting that a comprehensive assessment should address the following domains:
Socio-demographic details
Medical history (physical and emotional health)
Fertility, contraception and sexual health
Sexual function
Sexual coping style
Body and self-image
Sexual and relationship history
These authors also raise the importance of creating a direct and open communication style, similar to a life-coaching or mentorship approach, to work in partnership with AYAs to explore sexual concerns and deliver psycho-education whilst ensuring maintenance of clear and mutually agreed boundaries of privacy and confidentiality [116].