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A research study by Emily Murray, BScH, MA, and
Lynne Robinson, PhD

• the importance of sexuality related changes
• the strength of the benefit young adult cancer survivors experience from sexual relationships
• challenges in trying to address changes to sexuality and sexual relationships
• people without a current partner are no less concerned about issues concerning sexuality than others

Background to our study:
Fortunately, due to medical advances, cancer treatment is improving and, because of this, cancer survival rates are increasing. However, the end of cancer treatment does not mean the end of the effects of cancer. These can often be permanent and affect the sexual health of the cancer survivor, even if sexual organs are not directly affected. There is a potential for all cancer treatment options to affect sexuality in negative ways.

Sexuality means more than sexual intercourse – it also includes our gender identity and roles, sexual orientation, reproduction, pleasure, intimacy and eroticism. It plays a role in helping us define who we are and how we feel about our bodies and our intimate relationships with others. Regardless of differences in our sexual orientation, practices and attitudes, we all have a lifetime need for social interaction, intimacy, affection and being touched.

Both men and women can experience a wide variety of bodily changes due to cancer treatments and these can affect their sexual functioning. These physical effects include infertility, or decreased fertility rates, impotence, fatigue, hair loss, disfigurement, difficulty climaxing, impaired ejaculatory function, loss of libido, weaker and less satisfying orgasms, pain during sex and urinary incontinence.

There may be psychosocial effects as well from the diagnosis and/or the treatment of cancer. These can include: lowered self-esteem, body image, changes in mood, feeling contaminated, gender role definition, lost sense of personal control over bodily function, changes in personality, fears of seizures, fears of contagion and diminished quality of life

Unaddressed changes in sexuality can be among the most negative influences on the social well-being of a cancer survivor.

Our study:
The main focus of our research was to explore the experience of sexuality of young adult cancer survivors. Young adults have to deal with the effects of cancer on their sexuality at a time of critical development and there is limited research on how these cancer-induced changes affect sexuality at this stage of life.

Ten volunteers were recruited through online cancer resources such as Young Adult Cancer Canada and Facebook. The volunteers were interviewed by telephone and those interviews were then searched for the patterns of experience that most participants reported.

Our findings:
We found that the experience of sexuality after cancer treatment is characterized by a number of changes, which could take many forms. However, most often, participants reported negative experiences of having to deal with bodily changes and perceptions of their bodies, a new negative view of sexuality and waiting for their sexuality to return to what they view as normal. One issue that a number of cancer survivors talked about was the impact of body disfigurement from their cancer treatment. On the other hand, not all of the changes were negative as some participants felt empowered and are experiencing a new outlook on sexuality that is more positive than before.

A number of participants highlighted their unaddressed sexuality-related needs. Despite the number of changes they were dealing with, they believed that their healthcare team hadn’t adequately discussed the potential effects of cancer and its treatment on their sexuality. The young adults spoke of how they themselves found it hard to talk about, but that, overwhelmingly, this was something they wanted to talk about and that they wanted their healthcare team to initiate these conversations. They also spoke about how they want to talk to somebody “who gets it”, such as another young adult cancer survivor who had gone through a similar experience. The participants identified a number of related unaddressed needs that included:

• appropriate information necessary to support psychosexual well-being
• age-specific help
• a place to go to talk to others “who get it”
• appropriate support and services for their needs (e.g. fertility)
• the offer of counselling services
• appropriate support for the lesbian, gay, bisexual, transgender, queer and questioning (LGBTQQ) population

Having to deal with these unaddressed needs created both frustration and difficulty for the participants. In particular, participants made it clear that they are unprepared to deal with the potential effects of treatment on their fertility. In a few cases, the participants reported that these repercussions were not explained to them, nor were support services offered, prior to active treatment.

Participants talked about how important it is to be with others, and the way that treatment tests relationships. The survivors’ unaddressed sexual effects and inability to properly manage these symptoms can cause difficulties in relationships or cause survivors to seek out sexual relationships to deal with feelings of isolation. However, in some cases, the participants felt that going through the experience of cancer and treatment brought them closer to their partner.

Implications for practice:
Health promoters have an important role to play in mediating between healthcare providers and young adult cancer survivors, empowering the survivors to seek to meet their sexual needs and advocating for more equitable resources for young adult cancer survivors in an area of well-being that is so important for them. Healthcare providers need to talk about sexuality and educate cancer patients on the changes and challenges they might experience, as well as how these challenges can be managed. Not everyone seeks information in the same way, especially when it comes to sensitive topics, so this information should be made available in a variety of ways so survivors can choose the one that works best for them. Such sources of information need to be appropriate and inclusive for people of all sexual orientations. The responsibility of having these discussions with patients should not rest on one health profession. Everyone involved should approach the topic in a way that is related to their profession and their expertise. Providing information concerning online support groups may be an appropriate way to help connect young adult cancer survivors with each other. Survivors should also advocate for the healthcare and support that they need.

A great deal of research is still required to enable us to adequately support the sexual health of young adult cancer survivors.

Contact information: ekmurray@dal.ca