Like many mothers expecting their first child, Emily Cousins had braced for her life to turn upside down.
But she wasn’t prepared for the dual unknown roles she was to slip into just days after giving birth: New mom and cancer patient.
Cousins was diagnosed with breast cancer at 32, when she was nine months pregnant.
“I had imagined the first months of being a mother, and suddenly it looked so different from what I had anticipated. And it was painful,” Cousins said in an interview. “From being bald and wearing my goofy little hats to the mommy and me classes, to wondering, would I live to see this child enter kindergarten?”
On Thursday, 13 years after that wrenching period of her life, Cousins joined a group of cancer researchers, fertility specialists, survivors and patient advocates to discuss the unique issues at the intersection of cancer and reproduction at Fred Hutchinson Cancer Research Center’s inaugural cancer and pregnancy retreat.
As with any new mother, Cousins had many milestones in the early days and months of her son Colm’s life. But hers were a little different from most.
She delivered her son in the 38th week of her pregnancy, 10 days after she was diagnosed with Stage 1 HER2/neu-positive breast cancer.
When her son was 12 days old, she had a lumpectomy.
When he was 8 weeks old, she started the first of six rounds of chemo.
And when he was 8 months old, she finished her 35th round of radiation and entered the world of post-treatment cancer survivor.
Aside from the fear, coping with the treatment’s side effects and attempting to balance medical appointments with spending as much time as she could with her infant son, Cousins felt isolated. She didn’t really fit into either new community she’d been thrust into, she said: None of the other new moms knew what she was going through as a cancer patient. And she was by far the youngest cancer patient in her oncologist’s office. Everyone thought she was there to visit a parent or grandparent.
“Having cancer takes a lot of time. When I wasn’t having to do that job, I just wanted to be an ordinary mother,” she said. “But it was hard to have this massive thing that differentiated me from my peers.”
Slowly, though, Cousins found others like her. Young cancer patients. Survivors facing difficult questions about their fertility and family plans. And even a few who were also new parents.
“That made a huge difference,” she said.
At the retreat, Cousins joined a panel with four other women to discuss their cancer experiences. Like Cousins, all the patients and survivors present had a story to tell. But the stories weren’t only about being pregnant and having cancer. Some, like Courtney Preusse, a breast cancer survivor and patient advocate who helped organize the conference, had grappled with whether they’d be able to be parents at all.
Young women — and men — who’ve been through cancer and its associated treatments can be left with many questions about their own fertility. And when you add a hormone-driven disease like some breast cancers into the mix of pregnancy’s vast hormone swings, the questions can shift from “Am I able to have babies?” to “Will pregnancy make my cancer come back?”
Preusse was diagnosed with breast cancer at 31, when she was single and hadn’t yet thought about having children, she said. And none of her doctors talked to her about fertility preservation options. But years later, when she was past treatment and met her husband, those thoughts cropped up.
She had started a job at Fred Hutch working with breast cancer researcher Dr. V.K. Gadi, and she remembers a conversation eight or nine years ago when she pumped the oncologist for information about the possibility — and safety — of pregnancy after breast cancer.
Unfortunately, Gadi had few answers for her. Nobody in the field did, at the time.
“At that point, there was hardly anything in publication about it,” Preusse said. “It wasn’t even a topic of discussion. It wasn’t a topic that oncologists even broached.”
So the researcher and the cancer survivor decided to start exploring those issues together.
Now, nearly a decade later, we know a lot more about these sticky subjects, Preusse said. But there’s still much more research to be done, misinformation to be corrected and teams to bring together. Her vision for Thursday’s symposium was to involve patient advocates and researchers from different fields of medicine around the country in a series of discussions to identify areas where more research could have the biggest impact for patients.
“So maybe patients going through cancer treatments today aren’t going to struggle the way I struggled,” she said.
The day’s talks spanned the gamut of cancer, pregnancy and reproductive health — from preserving fertility in survivors of childhood and young adult cancers to how cancer treatments affect the unborn fetus to how pregnancy changes breast cancer risk — all of which fall under the heading of “oncofertility.”
Through all these talks a few key themes emerged. Many doctors — primary care providers and oncologists included — don’t have the right information to communicate to their patients about fertility and pregnancy. And on top of the misinformation pervasive in parts of the medical community, there’s a lot that researchers still need to know to better inform patient and provider decisions.
There are several myths surrounding cancer and pregnancy, Gadi said at the symposium:
At the patient advocate panel presentation, Cousins told the story of what happened in the years after her delivery and treatment for breast cancer.
When she was diagnosed so late in her pregnancy, “one of the first questions I had was, is my baby safe?” she said. Her doctor assured her that he was. “My next question was, can I have another child?”
Since she was already pregnant, she couldn’t immediately preserve her eggs — a woman has to be ovulating for that procedure. And although harvesting eggs after delivery and before starting treatment can be an option for some patients, Ma said, at the time Cousins’ doctors just told her “we don’t really know what to do,” she said.
A few years after her son was born and she’d finished treatment, Cousins and her husband started thinking about another pregnancy. But there were still so many questions.
“Was I fertile after chemo? Would it be safe to have that estrogen floating around in my body? What if the cancer came back, could my husband raise two kids on his own?” she said. “The third one was personal, that was for us to discuss, but the other two really needed medical advice and research to help us answer them.”
The body of research around cancer, fertility and recurrence during pregnancy was much smaller at the time, over a decade ago, Cousins said. But she and her doctors read through what research there was and decided it was likely safe for her to try to get pregnant.
“What inspires me to be a part of this event and why I think this work is so important is that I needed that research to help me make those very crucial decisions,” she said. “And there was some but we need so much more.”
Three and a half years after her diagnosis, Cousins delivered her second child, a healthy baby girl named Fiona. And there was no sign of the cancer coming back, and hasn’t been since, she said.
“I can’t tell you how profoundly lucky I feel and continue to feel, on so many levels,” Cousins said. “I so very well remember holding her that first night in the hospital after my husband and son had gone home, and just whispering in her ear, thank you for coming. I still whisper it to her, just in quiet moments.”
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Rachel Tompa is a former staff writer at Fred Hutchinson Cancer Research Center. She has a Ph.D. in molecular biology from the University of California, San Francisco and a certificate in science writing from the University of California, Santa Cruz. Follow her on Twitter @Rachel_Tompa.