When Judy Schwartz Haley got off the phone with her doctor, she didn’t know what to do.
Her 11-month-old baby, Genevieve, had started howling shortly after she hung up the phone. Genevieve was hungry and wanted to nurse. But the doctor had just told Haley, a Seattle writer, she had stage 3 breast cancer. And she had no idea whether breastfeeding was safe for her and her daughter.
It’s not like there’s ever a good time to get that kind of phone call. But there are some unique challenges in situations like Haley’s, when cancer and early motherhood collide.
Parenting a baby or small child is often all-consuming, even for healthy mothers and fathers. And so is going through cancer and its associated draining, destructive treatments.
Haley’s first — and second and third and fourth — thought after being diagnosed with cancer was: How will this affect Genevieve? How can she possibly be OK while I’m going through this? Haley, who was diagnosed when she was 38, felt alone. It wasn’t until several months later, when she met up with a group of young breast cancer patients and survivors — many of whom had children and brought them along — that the panic about her daughter started to lessen.
“I saw all these amazing kids of all different ages. That was the first time it really occurred to me that whatever happens to me, my baby can be OK,” Haley said. “That was where I had that shift where I went from worrying about how my cancer would impact my baby to focusing on taking care of myself.”
Haley and several other women who’d been diagnosed with cancer relatively early in life, when they had young children at home, shared their stories last month with an audience of cancer researchers, fertility experts and other patient advocates at Fred Hutchinson Cancer Research Center’s inaugural Cancer and Pregnancy Retreat.
We asked three of them to share their stories of motherhood and cancer again with us, in honor of Mother’s Day.
Several months after her daughter was born, Haley started having trouble breastfeeding. It became very painful. Her doctor diagnosed her with mastitis, a breast infection that commonly afflicts nursing mothers. Usually a simple course of antibiotics clears it up. But Haley’s pain didn’t go away.
So she went back to her doctor’s office, and the doctor said he thought she should have a mammogram at Seattle Cancer Care Alliance (Fred Hutch’s treatment arm).
“They do mammograms in their office, so the fact that he was referring me to SCCA was a big clue,” Haley said.
After her mammogram she was immediately whisked away for a biopsy. And shortly after that the phone call came. Her breast tumor turned out to be 11.5 centimeters wide and she also had Paget disease of the breast, a rare type of cancer affecting the nipple.
As her daughter cried and Haley didn’t know whether it was safe to feed her, she left her doctors several increasingly panicked voicemails. They finally called her back and gave her the go-ahead to nurse, but soon after she had to quickly wean Genevieve to start treatment and have a mastectomy.
Although her daughter was eating solid foods at the time, she suddenly wanted nothing but breast milk — Haley thought she was likely picking up on her parents’ stress and looking for comfort. Genevieve lost 2 pounds during weaning, which only added to Haley’s worry that her disease would have a negative impact on her daughter.
“That was really traumatic,” Haley said.
But Genevieve thrived. She is 7 now, and Haley is six years past her diagnosis. Haley credits the other survivors she met through the Young Survival Coalition, the group of young breast cancer survivors she first met up with months after her diagnosis, for helping her get through. She started volunteering with YSC the same year she was diagnosed and now holds a leadership position with the group.
“After I started volunteering I realized that my path to healing, part of the healing process, for me was going to be giving back,” she said. “That was a necessary component for me to be able to rebuild my life after cancer.”
For Dr. Elizabeth Prescott, director of Corporate and Foundation Relations at Fred Hutch, cancer was bookended by infertility. She and her husband started trying to get pregnant when she was 30 and working as a neurobiologist at Yale University. After unsuccessfully trying to get pregnant, the couple went through a battery of fertility testing and procedures, including four rounds of in vitro fertilization, or IVF, with no luck — or answers that explained the infertility.
“It was incredibly exasperating as a scientist to have doctors basically say, gosh, we just don’t know, it’s so weird,” said Prescott, who’s now 41. “And it took a long time – it was four years of trial and error.”
Prescott’s doctors advised her that if she wanted to continue fertility treatments, her next step would be to try IVF with donor eggs. So once she and her husband had moved to Seattle and settled into their new jobs, they did — and it worked. Her son, Sam, was born in 2009.
When Sam was about a year old, Prescott started having stomach aches that didn’t go away. When she was 36, and Sam was 16 months old, she was diagnosed with stage 3 colon cancer.
She later found out that she had a strong family history of cancer. She’d previously known her grandmother had colon cancer in her 60s, but it turned out that the same grandmother had also had uterine cancer earlier in life and that several of her other relatives had also had colon cancer.
Six months after finishing her cancer treatment, Prescott underwent genetic testing and found that she carries a mutation in a gene associated with Lynch syndrome, a hereditary disorder that increases the risk of many types of cancer. That mutation may explain why she got the disease so young — the average age of colon cancer diagnosis in the U.S. is 72, according to the American Society of Clinical Oncology.
When she contrasts her infertility experience with cancer, Prescott says the answers she’s received about her cancer satisfy the scientist side of her. And she thinks infertility may have prepared her to deal with her disease.
“In a lot of ways, infertility for me was harder than cancer,” she said. “It was the first time I had encountered something where I had absolutely no control and no answer.”
In fact, after she’d gotten pregnant and even during her cancer treatment, Prescott kept looking for answers.
“The question I asked my surgeon before I went into surgery to have my tumor removed was, ‘While you’re in there, can you look for endometriosis [a condition where uterine tissue builds up and can cause infertility]?’ Because that’s the one thing that nobody had looked for,” she said. “It was one of the first things I asked about when I woke up.”
She didn’t get an answer that day, though. But because Lynch syndrome is often associated with uterine and ovarian cancer, Prescott later made the decision to have a prophylactic hysterectomy and oophorectomy (removal of the ovaries). Sam — who’s now 6 and knows that he was conceived using a donor egg — asks her sometimes about siblings, and whether they can borrow another woman’s egg again.
“Now not only are there no eggs that can make babies, but there’s no uterus to house a baby,” Prescott said. She does feel the loss of a potential second child, she said, “but I’m happy to have one healthy child and to be here for him.”
After Prescott spoke about her experiences on a panel at the cancer and pregnancy retreat last month, a lot of people have been coming up to talk to her about fertility, she said. She thinks there’s an unmet appetite for these conversations, especially when fertility is tied to cancer — many young cancer survivors may have lost their fertility from chemo or may need medical assistance to conceive.
“We talk about cancer really openly. Infertility is still really stigmatized. I don’t think it’s because people are embarrassed, I think it’s because people don’t feel supported,” Prescott said. “We need to do a better job at creating opportunities for people to come together to share their experiences.”
Beth Caldwell and her husband, J, have always had an open-book policy with their two children, Maggie and Jim. So when Caldwell was diagnosed with metastatic breast cancer, or MBC, at the age of 37, there was no question that they’d tell their kids what was going on. Maggie was a little over 2 at the time so couldn’t really understand, Caldwell said. But Jim was almost 7 and had a better picture of what was going on.
“The best advice I’ve heard about raising kids when you have cancer, especially with mets, is that you need to tell kids the truth and you need to tell them nothing but the truth — but you don’t have to tell them the whole truth,” Caldwell said. “You tell them what is appropriate for them developmentally.”
Like other metastatic breast cancer patients, Caldwell, now 39, knows she will die with or of her disease. There is currently no cure for MBC. But she was unsure how to broach that subject with her son, who is now almost 9.
“When they found out that I had mets, we explained to them that cancer was always going to be part of our lives,” she said.
Jim and Maggie, now 4, both like to come along to Caldwell’s appointments — her oncologist is Dr. Edmond Marzbani, who directs medical oncology at SCCA’s Northwest Hospital branch. Maggie is fascinated by anything to do with blood, Caldwell said, but Jim can’t watch when they access her port. Caldwell spends so much time in the cancer world — a former civil rights lawyer, she refers to being a cancer patient and advocate as her job now — that Jim wanted to meet the people his mom always talks about and was curious about what her treatments were like.
Last summer, a little over a year after her diagnosis, Caldwell visited Olympia, Washington, along with other advocates and Fred Hutch researchers and staff to testify before the Washington state legislature in support of state funding for cancer research. Their testimonials were videotaped, and that evening her husband suggested their son might like to watch the video — but Caldwell remembered that in her testimonial, she talked about how she is going to die of her disease.
“That was awkward but he really wanted to see it,” she said. “I was like, ‘I guess we’re going there now!’”
After Jim watched the video he turned to Caldwell and asked her if she was going to die from cancer.
“I said, ‘Someday, but not today,’” she said. “That night when I put him to bed, he said to me, ‘Mom, I’m going to be sad when you die,’ and I said, ‘Oh sweetie, me too.’ I hugged him real tight and I walked away and I just fell apart. I sat on the floor and sobbed, because I didn’t want him to have to carry that. But cancer doesn’t give you a lot of choices.”
Rachel Tompa is a former staff writer at Fred Hutchinson Cancer 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.