Na'ama Carlin was 38 years old when she was diagnosed with breast cancer.
It happened during Sydney's 2021 Delta wave, and was one of the rare occasions her husband was allowed to accompany her to a doctor's appointment.
"I remember not understanding anything that was going on," Na'ama said.
"My partner was taking notes and crying … I was sort of like, 'Why are you taking notes and crying? Everything's going to be fine. It was just going to be benign.'"
The shock of a cancer diagnosis is familiar for far too many people. But for Na'ama, her health wasn't her only consideration. She was also 29 weeks pregnant.
"That was the very first time I could actually feel baby moving the whole day, non-stop.
"And the reality hit that I'm carrying life while my body is trying to kill me."
Cancer in pregnancy is rare, but it does happen.
Fran Boyle is a medical oncologist who has treated several pregnant people at the Mater Hospital in Sydney.
"As women are having pregnancies later … they start to get up into the age where breast cancer, in particular, begins," Professor Boyle said.
She said it's possible pregnancy hormones act "like fertiliser" when someone already has an area of breast tissue that's abnormal.
'Life and potential death'
It wasn't until Na'ama's third trimester when she started noticing pain in her breast.
A lactation consultant suggested it could be a blocked milk duct. She was encouraged to put potato slices on her breast and massage the blockage.
But when Na'ama finally saw her GP in person, he sent her off to get an ultrasound the next day, where the sonographer asked if she had a history of breast cancer.
"That's the first time I had an inclination that something could be going wrong," Na'ama said.
She had a biopsy and within days, had a diagnosis: triple-negative breast cancer.
Na'ama had already struggled to come to terms with what was happening inside her body.
"Suddenly I'm feeling pregnant, I'm looking pregnant. Suddenly I feel like I can do this — I can be a parent," she said.
"Then you find out that you have cancer … and needing to reconcile these two realities of life and potential death."
There was no time to waste. Na'ama would need chemotherapy, surgery and radiotherapy.
When cancer is detected in early stages of pregnancy, some people are advised to terminate. However, chemotherapy can be safely given in second and third trimesters.
"Intuition says that any toxic substance would be best kept away from the pregnant woman," Professor Boyle said.
"But once you get to the middle part of pregnancy, you can give chemotherapy … and you can do surgery quite safely."
The placenta protects the baby from certain chemotherapy drugs. This meant Na'ama could start treatment right away.
"I wanted to be in that treatment chair," she said. "I wanted to stay alive for my baby — to be here for him."
Then there are instance where some women are advised by their doctors to terminate their pregnancy for various reasons, including to give the woman a better chance of those women's survival.
Chemotherapy in pregnancy
Many chemotherapy side effects mirror pregnancy symptoms: fatigue, nausea, vomiting and appetite changes.
But, Na'ama said, rather than compounding chemotherapy side effects, pregnancy seemed to have a protective effect for her.
"Other than my hair falling out, there was nothing."
While the physical symptoms were lessened, the mental burden was not.
Scans commonly used for cancer staging are not safe for the foetus, so Na'ama didn't know whether her cancer had spread.
"It was hard not knowing the whole time: not knowing whether it's progressing, what it's doing, is it responding to chemotherapy?"
And while Na'ama trusted the chemotherapy wasn't harming her baby, the need to get on with treatment meant her son would be delivered early, something Professor Boyle said is common for babies in this situation.
Na'ama's oncology team and the maternity ward decided her baby would be delivered at 36 weeks and three days.
The darkest period
While Na'ama knew it was necessary for her baby to be delivered early, she still carries "intense guilt" from this time.
"I felt that they'd ripped me open, pulled him out and he's there because something I did was wrong," she said.
"I got cancer. It was my incubator that was faulty."
After her son was born, he needed special care, and so for three weeks, he remained in hospital.
Na'ama said this was the darkest period.
"I was so worried about the impact that being in hospital would have on my baby," she said.
"I never thought to consider the psychological impact it would have on me."
Supporting women in these circumstances
Nada Hamad, a haematologist at St Vincent's Hospital, wants to improve the experiences of women in this rare situation.
Two of her friends were diagnosed with cancer during pregnancy — one with lymphoma, and the other with melanoma.
"Supporting those two friends really highlighted to me the areas that I was blind to," Dr Hamad said.
She got involved in research to gather more information about the management and outcomes of women with lymphoma.
A key part of this research was asking women like her friends what they thought was missing from their care.
"They wanted to see better communication between the teams that were looking after them," Dr Hamad said.
"They [also] felt there could have been better sensitivity around preserving their future fertility."
The lived experience study also identified the need for economic and child care assistance, and the demand for ongoing psychosocial care.
Dr Hamad said women in this situation are often reliant on philanthropic organisations for such support.
She's hoping appropriate support can be instilled in the healthcare system as well, so all mothers have equal access.
Na'ama is already campaigning for change for other people who are diagnosed with cancer while pregnant.
She gave feedback to medical teams about parts of her care that, although well-intentioned, left her feeling "othered".
And through her work at UNSW in sociology and social sciences, Na'ama is seeking lived experience from cancer patients about the power dynamics in treatment, and how they might be improved.
And Na'ama's son?
It was a relief when Na'ama was able to bring her son home. Getting through the first months was a community effort.
"There were days where I could barely move, barely eat," she said. "But they kept us fed and alive."
The side effects from chemotherapy, which had been absent during her pregnancy, hit Na'ama with full force. But having her son there was a comfort.
"I would go and have chemotherapy and come home … and I could cuddle with him," she said.
"I remember lots of photos of me and baby … and we were both bald. I think baby had more hair than me at some point."
These are the kinds of stories Professor Boyle shares with people in her care who have just been diagnosed with cancer.
"It's the first question they ask: 'What happened to the baby?'" she said.
"To be able to say yes, here are the photographs … I think that actually gives women a lot more confidence."
Na'ama and her partner Matt celebrated their son's first birthday this year — growing from a tiny baby with a feeding tube to a lanky, smiling toddler.
"To think he was born 2.3 kilograms, unable to feed," Na'ama said. "All these traumatic associations with his birth which I still carry.
"And yet he's the funniest, quirkiest little boy … and what a story we'll have to tell him about his birth."
Editor's note (18/4/23): This article has been amended to include information about cancer diagnoses in early stages of pregnancy.
