Angela Ives1 , Toni Musiello1 and Christobel Saunders1
(1)
Department of General Surgery, School of Surgery, The University of Western Australia, Crawley, WA, Australia
Angela Ives (Corresponding author)
Email: angela.ives@uwa.edu.au
Toni Musiello
Email: toni.musiello@uwa.edu.au
Christobel Saunders
Email: christobel.saunders@uwa.edu.au
Keywords
Psychosocial careCancerPregnancySupport
Introduction
A pregnant woman attends your clinic and tests have confirmed a diagnosis of cancer. Your role today is to break this news to her. How you interact (verbally and non-verbally) with her over the next few minutes and coming weeks will have a lasting impact on her adjustment to cancer and motherhood. As a clinician, you want to do your utmost to ensure this woman has the best chance of long-term survival, but this has to be balanced against the viability and safe delivery of the child/foetus. Your views on the woman’s immediate treatment may differ from that of her and her family. The information you provide about the best treatment for her cancer and care for her unborn child needs to be conveyed in an unbiased and supportive manner, so that she can make an informed decision that is right for her and her family.
In this chapter, we describe some of the psychological and social issues for younger women diagnosed with cancer. In particular, we highlight the issues raised by women who have experienced a cancer diagnosis during pregnancy. The information provided is to assist you to communicate effectively with your patient and raise your awareness of the impact that your interaction and behaviour can have on these women. Given that breast cancer is the most common malignancy associated with pregnancy, much of the information presented is based on the experiences of women diagnosed with breast cancer whilst pregnant. Whilst treatment between cancers will differ, the psychosocial issues can be similar. However, where evidence from other malignancies exists, it will be highlighted.
Common Issues for Younger Women Diagnosed with Cancer
All women diagnosed with cancer will have some psychological and social issues. For many these will resolve naturally, but some women may experience long-term distress. A woman’s psychological response to her diagnosis and treatment changes over time as she reaches disease-free milestones or if her disease recurs [1, 2]. With women of all ages diagnosed with cancer surviving longer, these psychological highs and lows are accentuated in younger women, who may have greater amounts of anxiety and stress and a much longer potential lifespan [2, 3]. This can potentially lead to sustained psychosocial problems for women who are diagnosed with cancer when aged less than 50 years, who are single, live alone, have poor social support, have a pre-existing mental health condition and/or have children aged less than 21 years [4]. We also know that younger women diagnosed with cancer are psychologically more vulnerable than older women diagnosed with cancer [5]. Those diagnosed with cancer when pregnant are no exception. Briefly below we discuss the common issues reported for younger women diagnosed with cancer.
Younger women diagnosed with cancer will experience greater levels of stress and anxiety than their older counterparts [4–6]. Unique issues and stressors for younger women include the untimeliness of the disease and feelings of uncertainty about the future, the impact of the disease on their self-esteem and relationship/ future relationship with a partner, sex and body image, fertility, the risk of treatment-related permanent or temporary early menopause and managing the practical realities of diagnosis and treatment of cancer alongside caring for young children, continuing a career and financial burdens [2, 7–9]. Practical issues can cause additional stress and concerns for younger women diagnosed with cancer. Looking after a household, particularly when you have young children, is challenging for a woman who is also coping with cancer treatment [4, 10]. The stress will be increased if the woman is socially isolated. For example, women living long distances from family and friends, or who have a limited social support network, may experience greater stress and more difficulties in adjusting to their illness and treatment.
Women diagnosed with cancer who have children report they fear not seeing their children grow up and will miss out on being around when their children have families of their own [10]. They also worry about how their partner will cope with the children and the additional caregiving responsibilities and maternal duties if they are not around. Women may also be fearful that they may pass on their cancer genes to their children [11]. These fears may be accentuated when women are diagnosed with, and treated for, cancer during pregnancy.
There are many avenues of psychological and practical support for women diagnosed with cancer. Specialist cancer nurses, however, are reported to be the best initial source of support for women diagnosed with breast cancer, and these specialist cancer nurses are becoming more common for other cancers (e.g. gynaecological and colorectal); therefore, this invaluable support should become more widespread [4]. A woman diagnosed with cancer during pregnancy is likely to need more psychological and social support than other women dealing with a diagnosis of cancer, but there is little research in this area [12, 13].
Issues Specific to Women Diagnosed with Cancer During Pregnancy
…How could life be so cruel…here am I expecting my beautiful, beautiful baby. It should have been like the most exciting, the happiest time of my life how cruel that I couldn’t enjoy it. And even though I would look at this beautiful baby…I’m thinking I should be so happy and yet the joy – there was something – there was like a grey cloud over all the joy…
One of the most important things that you can say to a woman newly diagnosed with cancer during pregnancy is ‘you are not alone’. The overwhelming feeling these women report is that they felt they were the only woman who had experienced pregnancy and a diagnosis of cancer concurrently [12, 14]. As a result, these women felt incredibly isolated, which negatively impacted on their emotional well-being and their cancer and pregnancy experiences. These feelings of isolation can be reduced during your consultations by reassuring woman that other women have been through a similar experience. Additionally, effective communication between the oncology and obstetric health professionals is vital to support and reassure these women. A multidisciplinary approach to care should be provided, linking women with other health professionals such as a specialist cancer nurse, social worker or psychologist to ensure that they and their family are well supported during this difficult time [12, 15, 16].
Motherhood is an important influence on what women diagnosed with cancer during pregnancy decide about their cancer treatment. The stage of motherhood (no children, pregnant, with children) that a woman is at when diagnosed with cancer in turn influences any feelings of isolation they experience, the support and information they require, the decisions they make and their perception of how people judge them [12]. Whilst these issues are not unique to women diagnosed with cancer during pregnancy, they are more relevant to these women as they balance protecting their unborn child and ensuring optimal treatment for their own health and well-being. These issues and, in particular, how they influence decision-making at the time of diagnosis are discussed below, with particular reference to women who have been diagnosed with breast cancer.
Motherhood
Women diagnosed with cancer during or just after completing a pregnancy are forced to deal with two conflicting life events simultaneously. Thus, a woman who is pregnant will need to make decisions that affect both her and her unborn child’s morbidity and mortality. A decision to protect the health of her unborn child at the expense of her own health after a diagnosis of cancer or vice versa is not taken lightly [7, 17]. Every one of us is different and these women are no exception. Therefore, the decisions a woman makes at this time will be unique to her and will be based not only on the information provided to her about treatment options, but on her life experiences, beliefs, values and needs. The views women have on motherhood, including their desire for (more) children, play a major role in the decisions they make about their cancer treatment. Women who have children and/or want to have children in the future make decisions based on their children’s needs and/ or their maternal needs [14].
Women who feel their family is complete are more likely to choose the best treatment possible to improve their chances of survival. This decision is in part based on the fear of not seeing their children grow up; this is a well-documented stressor for women diagnosed with cancer [4, 9, 10, 18].
Women who are pregnant and believe their family is incomplete are often prepared to delay or forego optimum cancer treatment and risk their own lives, so that their unborn child is protected from the effects of treatment, or so they could conceive again in the future. Other women may choose to terminate their pregnancy for their own health, particularly if they already have children or because they fear that their child will grow up without a mother. Some women who believe at the time of their diagnosis that they want to protect their fertility may reassess their lives and relationships after cancer treatment and decide they are not prepared to have a child in such circumstances [14].
The cancer treatments chosen by the mother may have a psychological impact on her relationship with her child. This is not only the case when a woman is diagnosed with cancer when she is pregnant but also for women who are diagnosed when they have young babies. For example, a woman diagnosed with cancer who undergoes surgery may find it difficult to lift or carry her baby in the short term, and recovery from the operation and these physical limitations may impact on mother-child bonding. In addition, a woman cannot breastfeed whilst she is receiving chemotherapy or radiotherapy for breast cancer, and if this was her chosen method of feeding, this disruption can negatively impact on her emotional well-being [4].
If chemotherapy commences or continues after the birth of the child, women report feeling robbed of bonding with their child at that time [14]. However, later they saw this as positive and felt their child grew up to be easy going and independent. Mothers of primary school children at the time of their diagnosis identified few long-term psychological effects in their children. However, some mothers of older children were concerned that their children suffered psychological consequences as they understood more about the diagnosis and therefore worried about their mother. Previous studies have highlighted the importance of family-centred support as a useful service for women diagnosed with cancer who have school-aged children [19].
Isolation
They were all so caring…Everybody used to pop their heads in… It was beautiful. But it wasn’t that we were a celebrity for the good reasons. It was because they had all heard of my situation.
Young women diagnosed with cancer often feel ‘different’ [20]. When a woman is diagnosed whilst she is pregnant, this feeling of being ‘different’ is exacerbated. Dealing with two conflicting events concurrently causes enormous stress, to the woman and her family. Many issues arise for these women, including a fear of not being able to cope with the demands of motherhood and cancer treatment; the implications of others taking on the maternal role when they are unable to do so during treatment; having to bottle-feed, particularly if they have previously breastfed or if their maternity unit has a breastfeeding policy; and perceived pitying responses from others in their community. These factors compound the feelings of isolation these women experience [12, 14].
Whilst it can be stressful for those caring for a woman diagnosed with cancer whilst pregnant, it is important that health professionals think about the woman’s psychological and social needs as well as her physical care. Thought and discussion needs to be given to which hospital (maternity or general) ward or room a woman is admitted. Being aware that a woman may be particularly vulnerable to other peoples’ reactions to her situation is important. For example, other patients and health professionals may want to show their support for these women at such a difficult time, but their kindness can be misconstrued, and the woman may feel like she is on show or an ‘unusual specimen’ to be observed [12, 14].
The woman may fear that she will not be able to cope at home with a new baby and cancer treatment; therefore, linking her to appropriate emotional and practical supports is essential. Not all families have the support of an extended family or a network of friends, so working collaboratively across disciplines and offering links to services or information which can make life easier are vital for these women. Husbands or partners who have to or want to take time off work to support their partner are often financially disadvantaged with limited government support, particularly if they are self-employed. Private health cover does not cover all associated medical costs, and the support needed by new mothers undergoing treatment for cancer and caring for a newborn may be practical in nature. For example, help with cleaning, washing, ironing and cooking. Such services can be costly and are not always readily available, but specialist cancer nurses, midwives, social workers and psychologists are well placed to ensure that appropriate emotional, financial and physical support are available and provided when necessary [12, 14]. Such support helps women bond effectively with their new baby and reduces their feelings of isolation [21, 22].
Support and Information
They were all like sixty and seventy year old people. There was one other lady there that had a couple of young kids. But she was the only one there. Yeh, everybody was. They were all older. I didn’t really find anywhere that was really for younger people….I didn’t really find it helpful because all they wanted to do was look at the baby.
Young women diagnosed with cancer will all want access to differing levels of information and support relating to their cancer, contraception, fertility and/or pregnancy at different times during their cancer journey. Many young women report that they found it difficult at times to access the relevant information and support that they needed [9, 10, 23]. This is possibly because cancer diagnosed during or prior to pregnancy is uncommon, and information and support needs to be provided on a case-by-case basis.
The women often report that their treating clinician is not necessarily the best source of information or support [9]. This in part is due to a lack of time and knowledge of services and limited information available for this group of women. Gestational cancers are uncommon, and the clinician often does not have experience of treating pregnant women diagnosed with cancer. Whilst the primary focus of the oncology clinicians is the cancer treatment and cure, the woman and her family may feel that other issues such as future fertility and contraceptive are important to them, and it is essential that the women’s views are listened to, discussed and acknowledged [2, 10]. Women who have access to specialist cancer nurses see these health professionals as the best primary source of support and information. Whilst they do not always have the information to hand, they are perceived as empathic and play a central role in the woman’s care and support [4, 15].
Women diagnosed with cancer during pregnancy have emphasised the importance of peer support from other women who have been through a similar experience but are some way down the survival pathway. This is not in itself unusual as young women want hope that they will get through the experience, but it is an issue that can easily be overlooked by those around them [9]. For women diagnosed with cancer during pregnancy, the task of finding someone with similar experiences is even more difficult because the event is uncommon and the willingness of women who have been through such experiences to support others may decline over time as they do not want to be reminded of when they were ill [12].
Due to the limited number of women who are diagnosed with cancer when pregnant, there is often a lack of information or support locally. Often women need to access relevant resources from international groups such as the Young Survival Coalition (YSC) website (www.youngsurvival.org), aimed specifically at young women diagnosed with breast cancer. Other young adult cancer websites may also be able to provide additional information for pregnant women diagnosed with other cancers. In addition, Hope for Two, the pregnant with cancer network (http://www.hopefortwo.org/), has been set up to specifically assist and support women diagnosed with cancer during pregnancy. A telephone or online support network such as those provided by YSC and Hope for Two is ideal as women can access these from home at a time convenient to them and with minimal cost.
Support Groups
In general, cancer support groups are not necessarily perceived as a good mechanism for support by younger women [9, 10]. As many cancer types are more commonly diagnosed in older people, the majority of people who attend support groups have different support needs from those women diagnosed with cancer during pregnancy, or women who have young children. Support groups set up specifically for younger women, however, may be beneficial.
Decisions, Respect of Choice and Judgement
…I don’t believe she understood at an emotional level what it meant to have a child. I just mean in relation to me she didn’t understand on that level…It got to a point where she said to me…Well you’ve got two children. You’ve been lucky enough to have two children. You should be grateful for that and your life is far more important than worrying about what might be. And that was really upsetting and quite devastating…I realised at that point that she really was not listening to what I was saying. I don’t mean that she was wrong medically but she hadn’t acknowledged that it was a really big concern for me.
The decisions women diagnosed with cancer make about their cancer treatment and pregnancy are difficult. For many women, the ability to keep their options open and have some control over their lives is of great importance to them. Women want their views acknowledged, they want to feel heard, and they want their decisions respected. Unfortunately, this does not always happen, and it can have devastating consequences for the woman and her family. For example, a woman who feels she has not been listened to, respected or heard may refuse to undergo the recommended treatment resulting in neither the woman nor her unborn child surviving.
The psychological impact of medical decisions that can lead to loss of a pregnancy, or fertility leading to menopause, is not well known or fully understood. Currently, there is limited knowledge of the short- and long-term psychological effects for women who undergo termination of a pregnancy due to cancer diagnosis or treatment, particularly if the cancer treatment results in infertility [13]. Research suggests that fertility is important to women of child-bearing age diagnosed with cancer, and the impact of potential fertility loss should not be underestimated in how it impacts the cancer treatment decision-making process [10, 24]. Women who have had at least one child before their diagnosis of cancer may have a different perspective on this to women who are childless but want children [13]. Importantly, already having children does not imply that women do not want more children. Women may therefore need emotional support to work through issues surrounding a potential loss of fertility. In addition, women dealing with an enforced loss of a pregnancy or fertility will often worry about what effect such a loss could have on current or future relationships [2].
A clinician’s aim is to treat their patient to the best of their ability and without doing harm. It is important, however, that a holistic approach to care be taken which includes consideration of the woman’s values and concerns, even if these do not mesh with conventional/optimal treatment, or the perspective of the clinician. It is important that health professionals give women all the information they can in a rational and balanced way so that the woman is supported to make an informed decision that is right for her. Quite often if the woman and her family feel that they are listened to and reassured, they will undergo the optimal treatment. For some cancers with extremely poor outcomes particularly when diagnosed in early pregnancy, or cancers diagnosed at an advanced stage, then optimal treatment can include the termination of the pregnancy and palliative care [25]. Whatever choice a woman makes, it is important that health professionals support the woman and her family in their decisions even if they do not agree with them. This will reduce the chance of a woman disengaging with health professionals which could potentially lead to poor outcomes for the woman and her child.
Conclusions
Overall the main aim in supporting women who have been diagnosed with cancer whilst pregnant should be to provide holistic, individualised, supportive care. This will assist women and their families with decision-making throughout the pregnancy and cancer journey. To support these women, it is important that health professionals remember to:
· Listen, respect and acknowledge the woman’s views even if they differ from your own
· Utilise a multidisciplinary and multiagency approach to care
· Link individuals to services and information that assist with both emotional and practical support
· Offer support to women that will reduce isolation, yet does not make the woman feel unique or different
· Provide open communication and collaboration with the woman, her family and the obstetrics and oncological teams to ensure the best possible outcome for both the woman and her baby
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