A new review has shown that women diagnosed with cancer during pregnancy are generally not receiving the emotional support they need.
The researchers, led by Jenny Harris PhD, senior lecturer in cancer care at the University of Surrey, conducted an extensive literature review examining the causes of psychosocial issues such as distress, depression, and anxiety, affecting pregnant women diagnosed with cancer, and what supportive care was available to them and their partners.
The study, in collaboration with the charity Mummy’s Star, and published in BMJ Open, is the most comprehensive study of its kind to date, they said.
They pointed to recent global increases in the number of women diagnosed with cancer during pregnancy. "Although the risk of developing cancer is typically low at this life stage, there is a sustained global trend, particularly in developed nations and where the average number of births per woman is less than two, for women to delay conception. In these countries, the average childbearing age has increased to around 32 years. It is believed that this rise is coexistent with an observed increase in the numbers of pregnant women with cancer."
'Cognitive Dissonance' From Co-occurrence of Pregnancy and Cancer
They assessed data from a search of six databases, yielding 12 studies conducted in eight countries over six continents. The most common type of cancer diagnosed during pregnancy was breast cancer, which affected 70% of the total 217 women where cancer type was reported.
Women's age at cancer diagnosis was typically in the mid-30s, and ranged from 22-43. Treatments reported included surgery (71/173 women, or 41%) and/or chemotherapy (134/173, 77%), with a minority (26/173, 15%) receiving radiotherapy (either alone or with other treatments). Where reported, more than a third of the women in the total sample were primiparous (67/175, 38%) and most pregnancies resulted in live births (90/141, 64%).
All of the studies in the review focused on concerns relating to health-related outcomes for the women, including the impact of cancer treatments on future fertility; recurrence of cancer, health, and survival; and continuation with pregnancy and/or future infant outcomes.
Several studies also reported women's concerns and distress about how cancer treatments might impact their ability to breastfeed and worries about bonding with their infant. All studies described adverse psychosocial outcomes of this precarity for the women, including psychological distress, anxiety, a sense of conflict or uncertainty, loss, guilt, and disrupted expectations. Some described how the co-occurrence of pregnancy and cancer "created cognitive dissonance" relating to thoughts and rumination about both mortality and new life.
Common themes also included concerns about infants' health and their future development, a sense of lost opportunity, and feelings of 'not fitting-in'. Women felt isolated from peer support groups due to the low prevalence of cancer during pregnancy. The team said this potentially meant that clinicians, "while sympathetic, were unable to meet women's needs because they were insufficiently experienced at treating and caring for these women".
Family Influences Often 'Not Constructive'
In addition, there was some evidence that partners and/or wider family tried to influence women’s decision-making, for example to prioritise their own life rather than that of their foetus or to safeguard future fertility. Generally women felt this was "not constructive" and that these pressures could heighten distress.
A further finding was that women often delayed seeking medical help because they attributed symptoms to natural changes – for example, one woman put off seeking help following reassurances from family members that breast changes were likely related to pregnancy hormone changes.
Such delays may in part account for pregnant women with breast cancer being diagnosed with advanced disease more often compared with non-pregnant women (65–90% vs 45–65%), the researchers said.
"Some clear gaps in knowledge were evident in the literature," they said. "No studies assessed whether psychiatric symptoms were at a level requiring clinical intervention." In addition, important concepts such as fear of recurrence or progression "were completely absent from this literature".
What data they found suggested that women with cancer during pregnancy "experience significant distress and have considerable supportive care needs, persisting beyond the end of pregnancy". Yet, they found that there were no evidence-based supportive care interventions for women or families, and a lack of educational programmes tailored to upskill health care professionals. "How these needs are being met, if at all, either in the short or long term, remains largely unknown."
Dr Harris said: "Despite the increasing incidence of cancer during pregnancy, the psycho-social issues that women and their partners experience is an under researched area. This makes it extremely difficult to develop emotional care packages to support these women and their families with adjusting to such a difficult diagnosis, and to limit the long-term negative impact.
"There is never a good time to be diagnosed with cancer but a diagnosis in and around pregnancy is particularly challenging. The distress women experience during this time is immense, due to the difficult decisions and worry they encounter. We need to do more to help pregnant women with cancer, support their decision-making and ensure they get the emotional support they need to make a full recovery."
Thousands of Women Affected in UK
A spokesperson for Mummy's Star, a UK- and Ireland-based charity dedicated to women and families diagnosed with cancer during pregnancy, told Medscape News UK that the charity provides emotional support to any woman diagnosed with cancer during pregnancy, up to 12 months after delivering a baby, and to women who experience the loss of a baby due to their cancer. It currently supports around 480 women each year, which is approximately 20% of all women diagnosed in the UK.
"We know that there are lots of what may be perceived as small triggers that cause distress for women facing cancer in and around their pregnancy, from not allowing them to take their newborn baby with them when they go in for chemotherapy, to the cancer team simply not asking (usually because they don’t know) how they are getting on with their newborn.
"In most cases, these are both easily avoidable but help mum feel more like a mum at a time when they are often exhausted and feeling guilty about not being there for their baby."
The charity also highlighted the importance of ensuring that midwifery teams know that donor milk is available to mums who cannot breast-feed their baby due to their treatment. "Helping families to access this quickly helps relieve stress and guilt that a mum may feel if they cannot breast-feed but they want to."
Informed Birth Choices Should be Prioritised
In addition, Mummy's Star urges that informed choice be prioritised for all women and there should be a sound clinical basis for removing options for modes of birth. Asked to elaborate by Medscape News UK, Pete Wallroth, CEO and founder of Mummy's Star, said: "Risk is often cited unnecessarily as being higher when birthing at home, but birthing at home on its own is no riskier with a cancer diagnosis, provided someone has not gone into labour prematurely or having just had chemotherapy, for example, when they would be immunosuppressed."
A further example was that water births were at times ruled out when a woman had a brain tumour. However it was still possible for the woman to have some time in the water, if not the actually delivery – and this "would have a very positive impact on their wellbeing". It was better to start with a choice-based plan and scale down if essential, he said, "rather than starting with limited choices and then fighting to get choice back".
He explained: "Our approach [is] to maintain the families' birthing choices for as long as possible up to delivery, unless a treatment-based issue, disease progression or otherwise alters this."
Mummy’s Star said they wished to ensure that "all women who receive a cancer diagnosis during this time can access this vital emotional support". To this end, the spokesperson said, the key objective for 2023 and 2024 is "to extend our bespoke cancer and pregnancy training and education programme and ensure all healthcare professionals have the knowledge of our work so they can refer their patients onto us".
This project was funded and supported by the Cancer Cluster, School of Health Sciences, Faculty of Health and Medical Sciences, University of Surrey. The authors declared no conflicts of interest.
