Cancer in Young Adults: Through Parents’ Eyes
3. Sexuality and fertility: confronting the ‘taboo’
From the variety of different responses it seems that fertility and sexuality have been managed and experienced in a variety of ways. Some of the young men were devastated at the prospect of infertility while others simply wanted to get on with treatment. Some of the parents were concerned for future fertility, while others saw the urgency of the treatment as a priority. There is also a discrepancy between those families where the parents’ found the issue difficult to address and those where it was the young adult who found it problematic.
It is clear that there were different ways of responding –humour, avoidance, embarrassment by both parents and children. It is unsurprising, given the variation in families that different families found contrasting ways of dealing with the issues, and rnindividuals within those families responded in varying ways. However, the commonality in all the accounts, whatever the response, is recognition of the sadness that the loss of fertility at such a young age brings at a life-stage before most young people have had children of their own.
A similar sadness is displayed in relation to the loss of a sexual relationship. Whether the young person dies without having ever known intimacy of this kind, or whether they are in a relationship that does not survive the illness.
The difficulties of discussing sexually related matters are documented by Brannen Dodd, Oakley and Storey (1994). While mothers were more likely than fathers rnto discuss issues such as reproduction and sexual behaviour, they were still in a minority. And as these authors show, whilst a small minority of young people in their study confided in their parents that they had had sexual intercourse. In the main sexual activity was kept secret from parents. Yet in such circumstances there is a need for parents to engage with information that would usually by kept private by mutual, and silent, consent. Parents become entwined in knowledge of their child’s sexual experience or lack of it, both through issues of fertility and the effect on sexual relationships. Given the likelihood that such matters would have been avoided under normal conditions, the need to address these topics in the midst of the crisis of a cancer diagnosis can be experienced by all parties as immensely problematic.
The impact of cancer on sexuality and sexual relationships has been well documented. The physical manifestations of the illness and its treatment are often cited as the obvious reasons for sexual difficulties, but psychological and emotional factors can be just as damaging (Zmuda 2001a). According to Zmuda, depression, and anxiety coupled with changes in body image may result in sexual dysfunction.
Yet while in the past few years there has been recognition that sexuality may be profoundly affected by cancer and its treatment, Zmuda (2001a) suggests that a surprising number of clinicians still do not discuss sexual difficulties with their patients and fail to recognise deep-seated indicators of severe depression which include the inability to experience pleasure. According to Meyerowitz (2001) despite the fact that most people with cancer report a decrease in sexual function very few have discussed this with a health professional and do not what the commonly experienced problems are in this area. That there is a lack of communication on sexuality between staff and patients would seem to be supported by Hautamaki and Nojonen (2001) whose research findings show that many patients need information about sexuality and want to discuss such matters with health professionals. However, 59% of their sample of health professionals said that they discuss sexuality with less than 10% of their patients. The main reason given is ‘lack of education’ amongst the staff.
Zmuda also argues that a partner’s fears can affect a sexual relationship. There may be a concern that physical damage might result from intimacy, that they might ‘catch’ the cancer or be harmed by the drugs. Patients may also be so focused on their treatment regimen that they lose sight of other important aspects of their lives such as sexuality (Zmuda 2001b).
Borg argues that cancer and its subsequent treatment can have far reaching negative consequences on sexuality. Factors related to this psychological effect include: change in self-image – particularly important to young adults; crisis related to the loss of an organ or limb; feelings of sin and shame that might stem from the belief that the cancer is retribution or punishment for past misdeeds. According to Borg, ‘respect’ for the patients’ private lives, lack of time and specialist knowledge and fears about addressing a topic surrounded by taboo are the main reasons for it not being raised by health professionals.
While open discussion about such issues is of fundamental importance there are barriers to this taking place satisfactorily between patient and professional. The studies discussed here relate primarily to adults older than the age group focused on in this book. If problems are experienced with the management of the situation amongst older adults it is arguable that even greater resistance might be encountered when dealing with the matter with young adults. This may be because of an age gap between patient and professional, as a result of the professional not knowing if the young adult is sexually experienced or because of the young adult not having enough confidence to broach the subject.