The most common form of cancer affecting women between the ages of 25 and 49 years is breast cancer, (Cancer Research UK, 2020; Office for National Statistics, 2018). These women will be recommended treatments such as chemotherapy, radiotherapy, medical and surgical interventions and, increasingly, hormonal therapy such as adjuvant endocrine therapy (National Institute for Health and Care Excellence (NICE), 2018). The choice of treatment depends on multiple factors, including the person's overall physical condition, patient preference, and potential side effects. All treatment options can have an impact on the woman's ability to conceive and are not without their risks. For example, adjuvant therapies, such as chemotherapy, can result in a decline in ovarian function, leading to premature menopause (Hickey et al, 2009; Shah and O'Regan, 2018).
Oncofertility is a field that has developed over the past 10 years, with the aim of supporting people with cancer whose fertility may be compromised (Anazodo et al, 2018). It is a field where compromised fertility is regarded as being of high importance, rather than a side effect of treatment (Anazodo et al, 2018). Despite the growing number of fertility-preservation treatment options, the advancement of breast cancer treatments and NICE guidance (2017), the evidence suggests that many women are not discussing fertility with their medical team and are experiencing a lack of support (Peate et al, 2009; Breast Cancer Now, 2016). These decisions are time-pressured and stressful, because women are having to trade off the immediate consequences of starting cancer treatment with the longer term chances of having a biological child in the future—after cancer treatment.
Personalised care in oncology is a stated aim of the NHS Long Term Plan (NHS England and NHS Improvement, 2019). Patient empowerment and involvement is highlighted in the plan, with an emphasis on patient decision-making. The plan makes clear the way in which nurses can support aspects of individual patient empowerment and decision-making.
Study aim
The aim of this study was to look at how women are supported in their decision-making when faced with fertility-impacting treatment following a diagnosis of breast cancer. In order to answer this question, a review of the literature was undertaken using a systematic approach to the collection and analysis of the articles in the study. The objectives were to:
Methodology
Data collection
A search of the literature was undertaken between 2 February 2019 and 27 April 2019, using three electronic databases: PsycINFO, Medline and the Cumulative Index to Nursing and Allied Health Literature (CINAHL). The search terms used were:
Inclusion and exclusion criteria
The search parameters were articles between 2009 and 2019 because it was over this period that oncofertility became recognised as an important clinical field (Anazodo et al, 2018). Because this review aimed to include the fullest range of methodologies, studies using quantitative, qualitative and mixed methods were included.
The database search resulted in 105 articles. After the initial round of screening duplicates (n=33), a total of 72 were screened against title and abstract. After this, a total of 23 remained. These were then screened against the inclusion and exclusion criteria for the study. Studies were included if primary research was undertaken and if the articles were specific to breast cancer only. Articles that did not relate explicitly to fertility were excluded, for example those that focused on decision aids, pregnancy after breast cancer or fertility treatment. Research was also excluded if the participants were at risk of developing cancer but had not been diagnosed; for example, women who have the BRCA gene. This was because these women had not gone through the same decision-making process as those who had already been diagnosed. A total of eight papers remained, five qualitative and three quantitative. A PRISMA diagram is given in Figure 1.
Data analysis
A process of systematic, thematic analysis and coding of the extracted papers was conducted according to the standard principles of thematic analysis (Braun and Clarke, 2006). Three main themes were to emerge from the data:
Six sub-themes also emerged:
The three major themes will be explored in this article and are shown in Table 1.
| Article details | Themes | ||
|---|---|---|---|
| Risk and recurrence | Relationship status | Denial of choice | |
|
Corney and Swinglehurst (2014)
|
Fear regarding undertaking FP due to taking hormones | No women were offered counselling or mental health support |
|
|
Gorman et al (2011) Qualitative study |
Women perceived choosing FP to be a risk because of the possibility of cancer recurrence as they required GnRH therapy | Women felt their choice was taken away because they needed to undergo the most aggressive treatment in order to gain the best chance of survival | |
|
Hill et al (2012)
|
Single women less likely to undertake FP treatment. FP consultations were not always offered to single women | ||
|
King et al (2012) Quantitative study |
24.7% of respondents expressed that a women's relationship status would affect whether or not it would be discussed | 62% of health professionals were aware of the fertility pathway |
|
|
Kirkman et al (2013)
|
In some cases health professionals assumed that single women do not want to undertake fertility treatment and for many fertility was not mentioned at all | Those who were single received care less focused on FPn | |
|
Lee et al (2011)
|
Some women believed having FP or pregnancy could cause recurrence of cancer |
Some health professionals assumed that if a woman already had children she did not want to have any more and did not discuss fertility options | Women felt as though cancer had taken away their choice to have children, leaving them with feelings of loss and grief |
|
Ruddy et al (2014) Quantitative study |
Both the risk of recurrence and fertility play a role in decision-making regarding cancer treatment | Due to fertility concerns, 12 women chose a different chemotherapy regimen, 6 considered not undertaking endocrine therapy, 19 did not have endocrine therapy, and 71 considered receiving endocrine therapy for <5 years; 65 used FP treatments. 4 women chose not to receive chemotherapy | |
|
Snyder and Tate (2013) Qualitative study |
Some women were put off from having FP, such as embryo cryopreservation, because it requires taking hormones | Single women are less likely to undertake FP | |
Key: GnRH=gonadotropin-releasing hormone; FP=fertility preservation
Findings
One of the three major themes highlighted in the study was risk and recurrence, which was discussed in five of the studies. This theme identifies whether treatment decisions were based on fear that cancer would return. Denial of choice and relationship status were also prominent themes featured within the articles. The denial of choice comprised two areas: many women believed that their choice to have children was taken away by breast cancer and some women were denied the choice of discussing fertility. Last, the theme of relationship status explores how, in some cases, women are more likely to discuss fertility with a health professional if they were in a romantic relationship than if they are single.
Risk-taking and recurrence
The research reviewed suggests that fertility decisions were influenced by whether the women were prepared to take risks in their treatment. Lee et al (2011) found that women believed pregnancy was a risk because it would cause a surge in hormones, which could cause the cancer to return. This was particularly the case if the cancer was oestrogen positive. Snyder et al (2013) and Corney and Swinglehurst (2014) found that some women were reluctant to undertake fertility preservation treatments, such as embryo cryopreservation, because it required hormonal therapy. However, this assumption is not fully supported by the evidence; Azim et al (2013) identified that pregnancy does not increase the risk of breast cancer returning and women should not avoid pregnancy solely because they have had breast cancer.
Furthermore, young women often fear cancer recurrence, causing feelings of stress and anxiety, as well as worries surrounding a potential decline in quality of life (Lebel et al, 2013). A contributing factor to this decline includes the possibility of infertility (Hill et al, 2012; Partridge et al, 2014). Infertility and cancer are known to cause goal disengagement, psychological distress and problems with identity (Neter and Goren, 2017; Dumalaon-Canaria et al, 2018). This suggests that at the time of making decisions regarding treatment and post treatment, women need to be correctly informed and supported. However, research suggests that women are not receiving written information regarding fertility and some health professionals do not have the full information required when discussing the topic (King et al, 2012; Ruddy et al, 2014).
A counselling service was offered to some women who took part in some studies and many found the psychological service a valuable component of the care provided by the multidisciplinary team (Corney and Swinglehurst, 2014; Kirkman et al, 2013). The British Infertility Counselling Association (BICA) (2019) suggests that women and, if appropriate, their partners, should receive counselling when considering fertility treatment. This includes supporting individuals emotionally, providing information regarding the procedures and considering realistic options (BICA, 2019). The first international consensus guidelines for breast cancer in young women suggested that fertility is one of the many complex issues that young women with breast cancer face, and therefore it should be addressed by specialist breast care nurses, fertility experts and psycho-oncologists (Partridge et al, 2014).
A recommendation for practice is to make both health professionals and the women affected aware of counselling services and to provide BICA training for doctors and nurses. The aim would be to provide support and advice to women and couples in the hope of alleviating stress. Lebel et al undertook two studies (2009 and 2013), which suggested that reducing stress in the first 15 months after a breast cancer diagnosis may improve feelings of fear of recurrence for women under 35. Therefore, providing support in a complex issue such as fertility may also have long-term benefits.
In a survey by Breast Cancer Now, 45% of women reported ongoing fear of the cancer returning and 33% experienced anxiety after a breast cancer diagnosis (Breast Cancer Now, 2018). Offering mental health support such as cognitive behavioural therapy (CBT) may be an appropriate recommendation for practice. CBT has been found to effectively reduce feelings of stress, anxiety, and grief, leading to a better quality of life (Stubbings et al, 2013; Rosner et al, 2018). Despite CBT being an effective treatment, waiting times for NHS services are growing and private sessions are expensive, restricting access to CBT (Cooper, 2018; Gilburt, 2018). Furthermore, CBT requires time and commitment to sessions (Royal College of Psychiatrists, 2015) and this may be too much for patients to deal with alongside hospital appointments and cancer treatment. This highlights how receiving good support at the decision-making stage of treatment is a timely intervention that may help to prevent a steep decline in mental health (Gewefel and Salhia, 2014).
Denial of choice
The theme of denial of choice was explored in different circumstances. Some women felt as though cancer had taken away their choice to have children (Gorman et al, 2011), whereas others did not even have the opportunity to discuss their fertility (Lee et al, 2011; Corney and Swinglehurst, 2014). Gorman et al (2011) found that women felt as though their choice was taken away from them because health professionals, and, in many circumstances, the women themselves, wanted to pursue the most aggressive treatment in order to gain the best chance of survival. However, some women felt that their oncology team had discussed fertility too late, often after they had started a form of treatment (Gorman et al, 2011). If the conversation is left too late it prevents women having a choice regarding their treatment.
On the other hand, the study by Ruddy et al (2014) suggested that concerns regarding fertility led to women choosing a different course of treatment. For example, of the women who reported that concerns about fertility affected their treatment decisions 12 (2%) chose one chemotherapy regimen over another, 19 (3%) decided not to receive endocrine therapy and 71 (11%) considered receiving endocrine therapy for less than 5 years (Ruddy et al, 2014). This is a small number of women, but it suggests that some women were able to discuss different treatment options with their medical team and took part in the decision-making process. Overall, Gorman et al (2011) and Ruddy et al (2014) suggested that women encounter very different experiences concerning fertility. Nonetheless, even if the likelihood of conception after treatment is low, women should have the opportunity to discuss their options.
In some cases, women were denied the choice of fertility preservation treatment entirely (Corney and Swinglehurst, 2014; Kirkman et al, 2013). In one study, only 10 of the 24 women who participated were offered a fertility appointment (Lee et al, 2011). The American Society of Clinical Oncology has recommended that all women of childbearing age should be referred to a fertility specialist as soon as possible (Runowicz et al, 2016). Although in some situations a referral may be inappropriate, the Department of Health and Social Care (2015) has stated that all individuals should be supported, consulted and involved when making decisions regarding their care. Therefore, discussing fertility is important in order to gauge whether or not a woman wants to explore further options. In addition, research suggests that professionals are cautioning women against pregnancy (Lee et al, 2011; Gorman et al, 2011). This is despite research suggesting that becoming pregnant after breast cancer puts women at no greater risk of ill effects such as recurrence (Azim et al, 2013), as well as guidelines stating that it should not be discouraged (Partridge et al, 2014). This implies there is a lack of expertise in this field (King et al, 2012). Many women admitted to undertaking their own research regarding cancer treatments and it was only then that they found out about the negative impact on fertility (Gorman et al, 2011). By this point, for many it was too late (Gorman et al, 2011). Whether or not someone is fertile is a question that remains with an individual after the cancer has been treated and is of great importance to many women (Gorman et al, 2011).
It is apparent that only some health professionals are aware of cryopreservation and the cancer guidelines (King et al, 2012). Research by Gorman et al (2011) and King et al (2012) indicated that health professionals working in oncology should have enhanced training in infertility and breast cancer care. The research suggests that some areas are better than others at providing this information and giving women the opportunity to make an informed choice (Ruddy et al, 2014; King et al, 2012). However, all women going through this decision-making process should be able to discuss their options with knowledgeable staff (Nursing and Midwifery Council (NMC), 2018) and should not be denied the opportunity to consult a fertility specialist.
Relationship status
The third theme identified was the impact of not being in a romantic relationship on fertility decisions and what affect this has on women's experience of care. Kirkman et al (2013) suggested that health professionals assume that women who are single will not want to pursue fertility treatment. In some situations this is the case because single women would need to use a sperm donor (Bedoschi and Oktay, 2013), which is something the women may not feel comfortable with. Nonetheless, it is a choice that all women should have and to assume otherwise contradicts the NMC Code (2018). Furthermore, oocyte cryopreservation is another option for women who do not have a partner at this time.
In the study by King et al (2012), 24.7% of health professionals stated that a women's relationship status would affect whether or not fertility would be discussed. Overall, women in a relationship are offered fertility treatments more readily after a breast cancer diagnosis despite fertility being an important factor to many women whether or not they are in a relationship (King et al, 2012). It also appears that single women are not receiving enough support to make decisions regarding their fertility, with one study finding that health professionals implied that women should only be worrying about survival (Corney and Swinglehurst, 2014).
Recommendations for practice
One recommendation for practice would be for health professionals involved in the care of women with breast cancer to identify early on whether or not a woman wants to have children in the future. For example, a question regarding fertility and children could be asked during an admission or initial assessment so that health professionals know whether to address this at a more appropriate time. If the topic is discussed with every woman of childbearing age, whether or not they are in a relationship, it would prevent assumptions being made and, it is hoped, would become standard procedure.
Other recommendations include:
Limitations
A limitation of this review was that, owing to time limitations because this was undertaken as part of a nursing degree course, only three databases were used: CINAHL, Medline and PsycINFO. Others, such as PubMed and the British Nursing Index, may have had relevant studies that could have influenced the overall findings of this literature review. If a similar piece of research is undertaken in the future, a wider search and possibly more articles could be critically analysed in the hope of improving the generalisability and transferability of the findings (Linsley et al, 2019).
Furthermore, the research studies reviewed were published between 2011 and 2014. This was before the publication of NICE guidelines (2017) and the first international consensus guidelines for breast cancer in young women (Partridge et al, 2014). However, in a more recent study, van de Berg et al (2018) suggested that women are not always provided with specific information concerning cancer treatment and fertility impairment. They recommended that having more detailed information, such as on hormonal tests, would support health professionals in empowering women before commencing anticancer treatment (van de berg et al, 2018). This suggests that some problems concerning support and decision-making during cancer treatment may still be current today.
Conclusion
The research articles reviewed suggest that many women do not receive enough support regarding fertility decisions when they are diagnosed with breast cancer. This is despite fertility being a factor that many women consider when making decisions regarding cancer treatment. There appears to be a lack of specialist knowledge concerning fertility among some health professionals, and some need to develop greater expertise in this up-and-coming specialty. Breast cancer care needs to become more individualised and women need to feel more empowered to weigh up the benefits and risks of treatment when considering the effect it will have on their fertility. As treatment is progressing and life expectancy is improving, health professionals need to consider a long-term holistic approach. Treating cancer has the ability to affect the rest of someone's life, so women's voices should be heard and respected during the pivotal time of the decision-making process.