I discovered the lump in my breast during my second trimester. This being my first pregnancy, and as I have no family history of breast cancer, I wasn’t alarmed by this change. When I complained to my antenatal team via Telehealth (I became pregnant during Sydney’s Delta Covid wave), they said it could be a blocked milk duct. No one suggested I come in for a physical examination or proposed the changes to my breast were anything but pregnancy-related.
It wasn’t until my GP examined me as part of a standard shared-care appointment that suspicions were raised. He referred me to an urgent ultrasound. Within a week, I was admitted for a biopsy at a cancer centre. Receiving the biopsy result days before Christmas, reality struck: I was pregnant with cancer.
While cancer diagnoses during pregnancy are considered rare, a study showed that melanoma and breast cancer are among the two most common cancers diagnosed during pregnancy in Australia. Due to its prevalence, most studies focus on gestational breast cancer (GBC), which was my diagnosis at 29 weeks.
Pregnant women diagnosed with GBC often delay seeking medical help because they believe their symptoms are due to natural changes in their body, for example, breast pain and tissue changes due to pregnancy hormones. This delay and the common assumption that any breast change during pregnancy is hormonal and normal is one reason why GBC can be more advanced at presentation (larger tumour size and lymph-node involvement) than non-GBC, according to the Royal Australian College of General Practitioners (RACGP). Despite rising rates of cancer diagnoses during pregnancy, a recent study found that, alarmingly, people diagnosed often don’t receive the support we need.
I say alarmingly because cancer and pregnancy are two major life events, and when they intersect, their combined impact is overwhelming in every aspect: physically, psychologically, financially. Few things make you plan for the future like a pregnancy, and nothing makes this future more uncertain than cancer. A recent paper stated that despite rising prevalence, the psychosocial issues associated with a cancer diagnosis during pregnancy “remain an under-researched topic”. Studies that do exist show that those who are pregnant with cancer experience significant distress and have considerable supportive care needs that aren’t often addressed, even after the pregnancy ends.
In my network of women diagnosed with GBC, common themes emerged: we felt isolated and even stigmatised by being a cancer patient. We felt guilty for undergoing treatment while pregnant, even though it was made clear to us that chemotherapy was safe. We felt anxious over an uncertain future. Compounding our experiences were mounting financial costs. In addition to costs associated with a newborn, we now had to factor those that come with cancer, such as specialist fees, gap fees, medication and treatment for side-effects.
One area that requires attention is coordination between oncology and antenatal teams. In New South Wales, where I live, babies born to women with GBC (or, indeed, any other cancer) are more likely to be preterm and require additional medical attention such as time in neonatal care units. In my case, labour had to be induced as our baby’s growth slowed. While both antenatal and oncology teams were exceptional in their care, coordination between these teams felt unclear at times. It became evident that some on the antenatal side didn’t know how to “deal” with the cancer part of my pregnancy and delivery. Something as basic as handover of medical files in the maternity ward contained an incorrect cancer diagnosis for me. The system wasn’t designed to support patients straddling two ostensibly disparate parts of it. My experience is not unique.
I’m fortunate to have received top-notch care from my medical team (with my oncologist, who goes above and beyond, at the helm). But care should be embedded into the system already, rather than be up to chance. We need to ensure conversations about breastfeeding and fertility after treatment are approached sensitively. To invest in neonatal and postnatal healthcare worker training about cytotoxicity. To ensure health systems of care coordinate effectively when it comes to supporting patients with intersecting diagnoses and needs. To make counselling available to pregnant cancer patients and their families. And finally, to bolster financial support for care. As a new mum undergoing cancer treatment, I was reliant on charities (such as the Australian Mummy’s Wish foundation and the Hope for Two network) for ad hoc financial support. I also had to crowdfund for immunotherapy treatment, which cost upward of $60,000. It shouldn’t be the case. Healthcare and associated support must be accessible for all.
Being diagnosed with cancer during pregnancy can feel overwhelming, isolating and terrifying. While the research says these diagnoses are rare, it feels like every other week a new woman reaches out to share her diagnosis and fears. To those going through this: you are not alone. To our healthcare system: we need more robust support and communication for and with pregnant cancer patients. With rates on the rise, the time for meaningful change is now.
• Na’ama Carlin is an academic and writer living on unceeded Bidjigal land. Her co-authored book Being Patient: Close Encounters in Cancer World (NewSouth Press) is forthcoming
