Young People Living with Cancer: Implications for Policy and Practice

7. Sexuality and Fertility

We begin by returning to the issue of forming or sustaining a relationship after diagnosis and treatment. It is clear from the accounts above that the difficulties experienced in terms of self confidence build on the issues discussed in the last chapter to undermine the young peoples’ belief that they will be found sexually attractive and be able to make new relationships. This is exacerbated by age and life stage as it is at this point in their lives and development that young people pay a great deal of attention to physical appearance (Lewis 2005, Hain 2005) and the forming of sexual relationships (Craig 2006).

Most of the young people in the study were in relationships at the time of diagnosis and some of these had survived despite the stress of the illness. Others had found that their relationship could not withstand the demands and effects of the illness or feared that a partner was only staying with them out of a sense of duty. For these young people having to let go of the relationship as well as facing an uncertain future proved challenging. For those who hoped to establish a relationship at a later stage, the prospect appeared daunting. This is redolent of George’s fears when on an early visit to the oncologist George asked his father the question “Will anybody ever love me with a metal knee?” (Grinyer 2002a:68)

The forming of new sexual relationships amongst teenagers and young adults is perhaps a more central part of their life stage than at any other period. The anxieties that are provoked by insecurities about body image and attractiveness have been expressed by many of the young people and summed up in George’s comment above. Yet if Shaw et al (2004) are right, many nurses are ill prepared to engage with and support their young patients in this area, but as these authors say with appropriate training they would be in a pivotal position to assist the adolescent cancer patient – again suggesting that it is in the specialist care setting that staff are more likely to develop expertise and learn strategies to feel comfortable in addressing this important issue.

We saw from Kelly’s example of being slightly older and having moved through the transition into the next stage of life, the infrastructure of her life and the stability of her marriage ameliorated some of the insecurities felt by those at the younger end of the age range. In the last chapter we saw that she was as concerned about her appearance as any other participant, but at least she had a firm belief in her husband’s commitment to her and that any physical changes were understood and accepted by him. The same applies to her perspective on fertility, having already had a child at the point of diagnosis some of the issues relating to the risk of future sterility were mitigated. The prospect of not having further children may have been a source of regret but not the tragedy it would have been had she not had a pre-existing child. Indeed may of the other participants expressed considerable anger at the prospect that they may remain childless.

A central theme of this volume is the concept of young adulthood, but as we have seen, there are many life stages along the continuum that raise questions about the similarity of experience for example between a 14 year old and a 24 year old. Yet the prospect of future infertility for a cohort that is largely childless is an issue that binds together the age range across the spectrum and crosses the gender divide. There are of course options for the preservation of future fertility and while these may be technically more straightforward for young men, the prospect of emotional distress and embarrassment still need to be addressed, while for the young women the time consuming and invasive nature of the procedure must be considered. We saw at the start of the chapter that in theory the cryopreservation of eggs for later usage or for IVF treatment and embryo cryopreservation is a possibility for young women. Yet it is clear from Nicola’s account that her urgent need for treatment may render such an option unviable in that it could cause a dangerous delay, or as in Kelly’s case apparently treatment may be unavailable through local provision.

It is also the case that in order for IVF treatment to take place at the time of egg harvesting, the young woman would need to have a partner to fertilise the eggs, and it is perhaps less likely that at this life stage a lasting relationship will have been established. Even a partner able and willing to provide sperm might at a later point, if the relationship failed, withdraw consent for the implantation of a fertilised egg. The high profile court case taken by Natalie Evans demonstrates the potential legal risks relating to such a procedure. In Ms Evans’ case embryos had been created prior to cancer treatment that was certain to lead to her infertility as she had both ovaries removed. However, her ex fiancé whose sperm had been used to fertilise the eggs when they were a couple, refused his consent for implantation after his relationship with Ms Evans failed despite the cryopreservation of the embryos stored on the assumption they would be implanted after her recovery (Guardian March 8th 2006:5). Ms Evans lost her case at the high court and subsequently at the court of appeal. Following this, the judgement of the Strasbourg court also found against her right for implantation to proceed. The stress endured indicates that the option of IVF and the cryopreservation of embryos can be fraught with potential long term risks. Ms Evans was in her early 30s when diagnosed with cancer yet the chance that a relationship between significantly younger partners may not survive seems even greater. As we have seen the stress the illness causes to relationships, particularly at the younger end of the age range, may result in their longer term failure and a possible legal wrangle over the right to implant embryos.

The centrality of these issues and their potential to cause distress and the consequent danger of non-compliance indicate that expertise needs to be developed amongst staff who are trained to support both young men and young women through the decision making processes while offering them the best chance for future procreation. The implications for policy and practice are addressed in greater detail in the final chapter.

Key Points

Effects on sexuality are far reaching because:

• relationships may be fragile
• relationships may be unstable
• relationships may not yet have been formed
• fear of partner staying out of duty
• self confidence eroded
• lack of libido
• embarrassment
• disclosure difficult
• partner may not understand

Fertility issues are particularly problematic because:

• infertility can result before children have been conceived
• families not yet completed
• sperm donation embarrassing
• sperm donation difficult
• sexual maturity needed for sperm donation
• egg harvesting invasive
• partner required for embryo cryopreservation
• pregnancy may need to be terminated
• treatment causing infertility may be refused