There has been a long-standing lack of national data regarding cancer during pregnancy and post birth in the UK. This has led to the figures about ante- and postnatal cancer diagnosis being obscured for some time, especially given the different systems that are used to record clinical information about patients. The cancer and maternity classifications in hospital admission codes have also not been matched up for the purposes of presenting regular data; however, steps have been taken to address some of that. Following the publication of research by National Cancer Registration and Analysis Service (2018), it is estimated that approximately 1 in every 1000 pregnancies is affected.
At first glance, some may think this invites words such as ‘rare’ and ‘uncommon’ to be associated with cancer and pregnancy. However, when we investigate this further and balance this against the UK birth rates over the past 4–5 years, this equates to two women per day receiving a diagnosis of cancer during or within 12 months of pregnancy, so perhaps it is not so ‘rare.’
At Mummy's Star, our purpose is to support women who have been diagnosed with cancer during pregnancy or within 12 months of a new birth. The stark and often tragic reality of two women per day being diagnosed means that a number of women seek our support, often unsure, not only about their own mortality, but also about the life and future of their baby, which many say is more important in their minds.
These concerns that women, their partners and their families have are not unjustified. Why would you not associate a diagnosis of cancer in pregnancy with danger? Pregnancy is sacred and scary on many levels, even without a cancer diagnosis, and so concern is understandable. However, a great deal of this concern can be alleviated quickly when the healthcare teams caring for women and families have the knowledge about a subject that has become clouded by misinformation.
Caring for women with cancer in pregnancy
The word ‘cancer’ strikes fear into not only the woman, but some health professionals, too. It can influence the entire maternity team who support her, and is not helped by a lack of information or, indeed, misinformation. Education and knowledge-sharing with midwives and the wider team are therefore imperative to improving the experience for women who are affected.
Many professionals who are not informed make a natural assumption that cancer treatments cannot possibly be safe for a pregnant mother or the baby. The simple truth here is that we know many treatment options are possible for pregnant women, within certain parameters. The most obvious of these parameters is that the pregnancy is beyond the first trimester. This knowledge offered my late wife Mair and I so much hope when she received her breast cancer diagnosis in June 2012, when she was 22 weeks pregnant with our second child. We experienced a multidisciplinary approach to care, where everyone knew what options and choices were available, and where, if something had to be ruled out, something else was offered in its place. Her tragic death from secondary cancer at 10 weeks postpartum should not overshadow this excellent care, and it is indeed this kind of model that we aspire to have in place for any woman in this situation. In many cases, a pregnant woman with cancer should be treated the same as a non-pregnant woman.
At Mummy's Star, we aim to work with practising midwives, student midwives and the wider maternity team to spread the message that maintaining normality as far as possible is the goal. A pregnant woman with cancer should be able to start her pregnancy journey in the same way as any other pregnant woman, with the full range of choices, knowing that her preferences will be taken on board and followed, as long as it is clinically safe to do so.
There are some who suggest we should not use phrases like ‘normal birth’—after all, what is a ‘normal’ birth? What we at Mummy's Star mean by using the word ‘normality’ is treating a woman with cancer like any other pregnant woman and not allowing the cancer diagnosis to become the dominating factor in her pregnancy. Working with more than 700 women who have received a diagnosis of cancer during or shortly after pregnancy has shown that a woman diagnosed with cancer during pregnancy is not automatically high-risk, and that it is possible to have a home birth or a water birth.
Oncologists will have a view on each individual woman and the treatment options available ante- and postnatally. These options can often affect decisions such as the date for delivery or whether induction is needed, and if there is a clear clinical reason and benefit to the woman, this is understandable. Until that intervention is needed, however, we would encourage midwives and student midwives to continue as you do with all women in your care. If a woman is pregnant, it is essential that she receives compassionate care with dignity, kindness and choice at the forefront.
Supporting women's choices
Many women diagnosed during pregnancy will have their treatment staggered around their delivery and thus will be induced early—sometimes before 37 weeks'—so that the woman can receive increased dosages of chemotherapy. In some cases, the cancer is so aggressive that delivery is required at 28+ weeks' and the baby may be on the neonatal unit for some time. Of the 700 or more cases that Mummy's Star has supported, only two have gone into natural premature labour.
If a woman has had any form of chemotherapy during pregnancy or immediately postnatally, the advice given by oncologists is to either ‘pump and dump’ to keep supply going until it is safe for her to try and feed, or to not feed at all so that the breast is not kept active, in case the cancer is hormone-receptive. It is clear that this is more of a tangible issue with breast cancer cases, especially if a mastectomy has taken place or is planned, as this makes breastfeeding more challenging for women, even if it has been approved by oncologists.
It is also important for women in this situation not to have to fight their maternity teams on her preferences, for example if she wishes for donor breast milk to be available. If it is a woman's choice to breastfeed, then we should be doing everything in our power to make that possible. NHS Trusts and Health Boards should prioritise and fund this, irrespective of whether the newborn baby spends any time on the neonatal unit. This is about offering a choice to the mother when her primary choice has been removed from her.
Mummy's Star often funds donor milk because a healthcare organisation takes the view that unless a baby is on the neonatal unit or is premature, there is no need to provide baby with milk, or because they deem donor milk to be ‘non-essential’. It should never fall on the third sector to pick up the cost of what should be a given for women in this situation. Decisions such as these ignore the mother and her hopes to breastfeed, and do not take a holistic view of the effect of the cancer diagnosis. They also fail to see the damaging psychological impact on the mother that, from a perinatal health perspective, can then create need for more service intervention.
Emotional support and memory-making
Some cases are unavoidably heartbreaking, such as when the cancer is of a nature that failure to treat immediately, with the full artillery of medication available, will inevitably lead to lower life expectancy. Therefore, families are left to contemplate a termination of pregnancy to protect the woman's life and, often, to give her a better chance of being there for the children she has already. In these cases, it is imperative that families are given bereavement care in the same manner as any grieving family. Baby loss is baby loss no matter how it tragically happens, and we sadly have seen many cases where, on ceasing to be pregnant, a woman is looked after solely as a cancer patient. Yes, she is a cancer patient, but in the family's mind, they are grieving and should be cared for as such.
For us, it is about working to give this woman a positive memory of her pregnancy journey. Although it may be difficult to believe, it is possible to create truly wonderful pregnancy memories for women despite their diagnosis—and this is really created by the midwives providing care. Giving a woman choice in her pregnancy, listening to her, talking constantly and compassion can all help. Continuity of care is also hugely beneficial. Some women may have had difficulties in previous pregnancies for a variety of reasons, but if we look after a woman with cancer as we would any other women who is pregnancy, we can give her back an enjoyment and with it positive memory.
Conclusion
No matter what the outcome, we are privileged to be a part of families' lives at such an emotionally fraught time. We should support them to the full of our professional ability, give them our overriding compassion and where possible, the benefit of our lived experiences.