New study has potential to transform cancer care for expectant mothers

Increasing numbers of women are being diagnosed with cancer during pregnancy – with estimates suggesting that as many as two women per day are receiving the heartbreaking news.

Despite this, there is insufficient UK data regarding diagnosis, treatment and outcomes due to a lack of routine clinical data collection.

Led by the University of Dundee, in collaboration with the University of Surrey and charity Mummy’s Star, the CAnceR IN PreGnancy (CARING) study is the first report of diagnosis, management and outcomes for a range of cancer types diagnosed during pregnancy in the UK.

The study collected information about cases of cancer diagnosed during pregnancy in women aged 16 years and older in the UK from 2016-2020. Information included the mothers’ age, the type of cancer, what symptoms they had at diagnosis, what treatments they received, and the outcomes for mother and baby.

The study has been published in the British Journal of Cancer.

Dr Mark Baxter, from Dundee’s School of Medicine, said that the team hopes the work will open discussions on how to improve data collection at a national level, and help design and inform future research and clinical practice.

He said, “Cancer of any type can be diagnosed during pregnancy. Each year more expectant mothers are being diagnosed with cancer. This may be because more women are delaying pregnancy until later in life, and we know that the risk of many cancers increases with age.

“Pregnancy may complicate cancer diagnosis and treatment due to the need to consider the safety of the unborn child. Pregnancy also presents considerable challenges around the decision-making required of parents and doctors regarding treatment and care options.

“There is a need to prospectively collect robust data to inform patient choice and treatment decisions, but, remarkably, this vital information is not currently routinely collected. Our findings show that collecting this data is possible, and that more research is needed.

“The development of a national data framework would enable comparison of UK data against other nations and facilitate collaborative work to review treatment, outcomes and experiences of patients and their families.”

Dr Jenny Harris, from the University of Surrey’s School of Health Sciences, added, “A cancer diagnosis is always challenging but during pregnancy it can feel devastating to mothers and their wider family. Diagnosis and care can be further complicated because most doctors, nurses and midwives will have little experience of cancer during pregnancy and there is limited UK data on which to base their decision-making, increasing feelings of uncertainty.

“We need future research to help us understand how multidisciplinary teams can best treat and care for these mothers, including supporting their psychological wellbeing.”

“I remember saying, ‘I have a son, I can’t die’"

When Sara Tyler experienced light bleeding 16 weeks into her pregnancy in 2014, she never expected it would reveal a rare tumour. 

Sara, now 37, was initially assured a lump on her cervix was likely a polyp. However, the lump continued to grow, and a biopsy uncovered a very rare and extremely aggressive form of cervical cancer - a small cell neuroendocrine tumour.

The team caring for Sara admitted that her case was one they hadn’t come across before, which left her feeling nervous.

“I remember saying, ‘I have a son, I can’t die’”, she said. “I desperately hoped someone in the room was going to reassure me, but they didn’t, because they couldn’t.

“They were very honest with me and told me they hadn’t dealt with a case like mine before, so they had to do their own research. They explained that a treatment plan had been put together by a Multi-Disciplinary Team. I would need to have a hysterectomy, chemotherapy, radiotherapy, and brachytherapy (internal radiotherapy).

“I was then given two options: to terminate my pregnancy and begin intensive treatment straight away, or continue with the pregnancy and begin chemotherapy using milder drugs that were safe to receive in pregnancy. 

“My husband and I both knew that a termination wasn’t an option for us. My baby had given me a chance and I owed it to her to give her a chance too.”

Sara, from Somerset, soon began chemotherapy, but unfortunately the tumour continued to grow, meaning the treatment was no longer working. 

At 32 weeks pregnant she underwent a caesarean section, and her daughter Grace was born. Sara then had to endure a six-hour procedure of a total hysterectomy.

Now, a decade on from her diagnosis, Sara’s treatment has long ended and both her and Grace are healthy and happy. She now works as a support worker for the charity Mummy’s Star, providing cancer support to families in similar situations to her own. 

“The mums that I support often tell me that the people caring for them will say how rare and uncommon cancer in pregnancy is, and that they don’t seem to have that black and white research in front of them and the data to refer to,” Sara added.

“I heard and felt that myself, and although I was lucky and had the best team around me, it set alarm bells ringing. Ten years on from my diagnosis, there have been little improvements, but we still have a long way to go. 

“Patients need to be able to go to their healthcare professionals and feel confident that they will do their absolute best for them, and that their knowledge is going to help them get through what they’re going to face. Healthcare professionals can’t do that unless the data and research is easily available to them and they have something they can refer to. 

“The CARING study is absolutely a step in the right direction.”