’No control and no answer’
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.”