Katie Davis was 12 years old and at a sleepover when she found the lump doctors later diagnosed as ovarian cancer. "My first question was, what's an ovary?" she tells Romper. Davis barely understood the diagnosis, let alone the threat treatment presented to her ability to have kids. Still, she could sense the grief in the room when the surgeon announced that he couldn't spare either of her ovaries.
Then came chemotherapy. Davis describes the drug in her veins as "a thick paste, like a snake crawling through you." It was hard to understand how such painful therapies could also save her life, but they did — even as the removal of her ovaries pushed her into early menopause.
"Cancer today is often a curable or treatable condition," explains Gilbert Mottla, MD, of Shady Grove Fertility, in an interview with Romper. "So the issue becomes, what is the residual cost for one’s fertility?"
"I kept saying to my doctors, I don’t care what you do when you go in there, but you have to leave my uterus. Leave an ovary." — Jennifer Marchie
Doctors explained that Davis would need an egg donor to get pregnant. As a kid, she assumed she'd just ask one of her three sisters; that it would be just like sharing a toy — "Which it isn't," she deadpans. Only when she met her future husband did she begin to confront the long, complex shadow cancer casts over motherhood.
While people around her were announcing their pregnancies on Facebook, Davis was trying to find ways to pay for in-vitro fertilization (IVF), and suffering from panic attacks. "It became one thing after another, realizing that this was going to be really hard. And then you have to deal with the emotional part of it, the disappointment ... People don't understand that you're not paying $20,000 to have a baby. You're only paying for the chance," she explains.
Davis relied on an egg donor to conceive, meaning she wouldn't technically be related to her child. She wondered if that made her less of a mother. When IVF treatments failed, she wondered if she were broken. Then she got pregnant with her twin girls, with the help of Fertility Centers of Illinois, and the fantasy of motherhood shimmered into reality. The questions, doubts, and fears that had tormented her before flew out the window. Putting her kids to bed, making school lunches — who in the world could say Katie Davis isn't a mom? She wouldn't believe them if they did.
Fertility Preservation For Cancer Patients
When Davis was diagnosed decades ago, her options were limited. Cancer treatments nearly always impact fertility to some extent, and some young people are left completely sterile. Today, women can pursue fertility preservation — oocyte cryopreservation, or egg freezing — to have children after remission.
But fertility preservation isn't easy, and hard questions linger long after cancer is gone. Patients have a short window before treatment to save an essential part of themselves. By freezing eggs or fertilized embryos, they can quite literally put the future on ice.
"The first oncologist I saw, he says, 'If you're my daughter, I wouldn’t let you continue with the fertility treatment. I would do a full hysterectomy immediately and take everything out.'"
Yet only 50 percent of patients who begin the fertility preservation process complete it. "Some of those people aren't interested in being pregnant, some are too sick to consider it, and there are a whole lot of people who don’t have the financial wherewithal to be able to do it," explains Mottla, who testified about the necessity of oncofertility insurance before the Maryland House of Delegates earlier this year.
Mottla emphasizes that the options are good — that fertility can be spared, and years of regret and grief staved off — with luck, hope, and liquid nitrogen.
But who can afford to take science up on this offer, financially, emotionally, and spiritually?
Young women with cancer must grapple quickly with some of life's hardest decisions. Their choices speak to different visions of motherhood, and different ways of finding meaning.
Jennifer of New Jersey, Diagnosed At 34
"The first oncologist I saw, he says, 'If you're my daughter, I wouldn’t let you continue with the fertility treatment. I would do a full hysterectomy immediately and take everything out,'" Jennifer Marchie tells Romper. "I told him that was unacceptable. I can't live my life without at least having tried."
It was a struggle with infertility that had led to Marchie's diagnosis in the first place. A fertility specialist at the Reproductive Medicine Associates of New Jersey (RMANJ) spotted a potential mass on her ovary during an ultrasound. "I kept saying, I’m so young, how is that even possible? People my age don’t get cancer."
Marchie refused to put motherhood on the back burner, and found a female oncologist who was willing to give her two years to have her baby. After that, she'd need a hysterectomy to prevent the cancer's recurrence.
Marchie scheduled surgery to remove the mass. "I kept saying to my doctors, I don’t care what you do when you go in there, but you have to leave my uterus. Leave an ovary. At that point, they didn't know if they could salvage anything. I didn’t know till I woke up what was left."
Her doctors did manage to spare one ovary, and six weeks after surgery, Marchie was back at the fertility office, wearing twelve staples in her abdomen. But IVF meant three shots in the stomach every night, and morning monitoring at 5am. It meant waiting for phone calls each day from the nurse. It meant ultrasounds, blood work, and tinkering with medication. It was a full-time job in and of itself, and, twice, it didn't work.
"I couldn’t give up. I just think it’s engraved in a woman. You have this mindset to be a mom, and once that finally clicks, I think nothing can stand in a woman’s way," she says.
Finally, a treatment took. Today, Marchie's seven-month old daughter is the light of her life, and motherhood the heart of it. Throughout diagnosis, surgery, and fertility treatments, her determination to be a mom never wavered. Her path, though difficult, was always clear. For others, the way forward is murkier.
Hannah of New York City, Diagnosed At 26
Hannah Pyper saw three different doctors before the lump in her abdomen was finally diagnosed — as a harmless fibroid. "I had really bad health insurance at the time, so I decided I’d wait until January to remove it. The doctor said that’s fine. It’s not a big deal."
In the midst of her operation, doctors realized they were in fact dealing with something far more serious than a fibroid. "I found out that I had [ovarian] cancer when I was all kinds of messed up from anesthesia. By the time they caught it ... it had spread beyond the ovary to my lymph nodes. Everything happened really quickly after that," Pyper recalls.
Immediately, doctors started discussing her options for fertility preservation, and Pyper was overwhelmed. The paradox for many young cancer patients is that they have to think about their fertility, or risk losing it forever; and yet, having kids might have been the last thing on their minds.
Pyper tells Romper, "It was crazy because they were talking to me about all these options like, you can just freeze the eggs, but you have a higher likelihood of success if you use a fertilized embryo. I had a boyfriend at the time ... but I didn't know if I wanted to be with him forever, let alone freeze an embryo together."
Still reeling, Pyper couldn't afford to think about her fertility just then. Her cancer was advanced, so she decided to start treatment right away. After four rounds of chemo, she was in remission by May of 2015. "I was just trying to get back to being a normal person — you know, growing my hair out again," she says of life after.
Last year, Pyper decided to check in on her fertility. The news wasn't good. She was only producing a third of the eggs she should have been. She'd also started to get wind of some troubling financial realities.
"I was talking to this doctor and he was breaking down the cost — $7,000 dollars for the drugs and another $4,000 dollars for the actual procedure," she explains. What young person living in New York City could afford it? She sought out other resources available to survivors, but it became an emotional weight, and so she stopped the process again.
It might have ended there, if it weren't for a new job — and excellent insurance.
Today, Pyper is undergoing an egg retrieval process at New Hope Fertility Center. Her employer's insurance covers 100 percent of her fertility preservation costs. (Of course, she's still on the phone to her insurance every day, explaining this over and over, like someone walking up Escher's stairwell.)
Pyper had always imagined she'd have children — some day. She's very clear that without her insurance, she might have had to let this dream go, before she'd even had a chance to dream it fully. Or found the right person to share it with. Now she can focus on being young and living life, picking up where cancer left off.
Kate of North Carolina, Diagnosed At 31
"One day, my husband looked at me and said, have you ever considered not wanting to pass this gene to our future children?" Kate Payne tells me.
Most cancer survivors preserve their fertility in order to have a genetic link with their children. But what it genetics are the problem?
"It's terrifying when you find out that this body that you clothe and feed and nurture every day has betrayed you."
Payne's family has always been riddled with breast cancer, and it strikes at an awfully young age. A beloved aunt was diagnosed at 26. The diagnosis also cropped up among cousins and her grandmother, all on her father's side. Payne got herself genetically tested, and doctors found an ATM mutation, a gene she has a 50/50 chance of passing on to her children.
Seven weeks before her wedding, a mammogram turned up stage 0 breast cancer. It was the earliest you can catch it, but horrifying nonetheless.
"It's terrifying when you find out that this body that you clothe and feed and nurture every day has betrayed you," says Payne. "I was going about my life and there were no symptoms. That's what scared me the most."
Instead of a honeymoon, Payne had a bilateral mastectomy. "We got through that in sickness and in health thing in a hurry," she laughs.
Payne never had chemo or radiation, so her fertility wasn't harmed. But still the idea of motherhood worried her deeply. She and her husband started talking about preimplantation genetic diagnosis (PGD), a method by which doctors weed out genetic mutations responsible for cancers and implant only healthy embryos.
"Family has always been the core of who I am. But we have this little genetic issue. What we've decided to try, it's a little controversial. But just watching people in my family go through this disease — it's been heartbreaking."
Payne isn't unconflicted about this path to motherhood — still, she believes it's the right one for her. She understands the pain cancer causes when it strikes young, and doesn't want that for her children. "It's wild. But it's exciting to think that we could stop this thing. What more could you want, than to protect your kids?"
It’s one thing to lose your hair, another thing to lose your breasts, but then to potentially lose your fertility? For me, that was the hardest part."
Caroline Of Texas, Diagnosed At 30
Freezing your eggs while managing a cancer diagnosis is no mean feat, but in doing so, most women hope to experience pregnancy and childbirth someday. In Caroline Brown's case, the cancer was highly responsive to hormones, and her oncologist warned her that pregnancy would be extremely dangerous.
"I always get emotional talking about it. As a woman, to be told you might not be able to have children, and that getting pregnant would be so horrible for your body… It’s one thing to lose your hair, another thing to lose your breasts, but then to potentially lose your fertility? For me, that was the hardest part."
Brown and her husband looked into surrogacy, a whole new world for them. She froze embryos with the help of The University of Texas MD Anderson Cancer Center, and while she was undergoing chemotherapy, her surrogate received the embryo transfer necessary to carry Brown's first child. Through all the aches and pains of treatment, she thought of the new life, just taking root. Her daughters are now one and three. Her surrogate carried them both.
"Looking back, it never felt like I didn’t carry our daughters," she says. "I think about them, and when they’re born, you just feel like, this is how it was always supposed to be."
Brown hopes to one day be able to tell this story without crying, but hers are the sort of tears that are only part grief. The other part is wonder.
Libbi-Diane of Chicago, Diagnosed At 9
At age 9, Libbi-Diane Flynn was diagnosed with a rare cancer, Malignant Peripheral Nerve Sheath Tumors, or MPNST. Only 200 cases are diagnosed per year, and the average survival rate is ten years. She had her first tumor removed at 9, and another at 14. At that point, her parents and her doctors decided not to pursue chemotherapy — which may not have been much use — to spare her pain, sickness, and infertility.
"I'm still not sure if I'm happy for that or not, because the tumor came back when I was 25," she explains. "Today I'm 35 years old. I've far exceeded that 10 year survival rate, but I'm also in a constant holding pattern." One day, she realized that all her friends were getting married and having kids. "I'm so behind," she says.
Flynn has had over ten surgeries, removing bone, muscle, and cartilage. She's had two nerve roots, which means she has only 10 percent use of her left arm. "What else," she muses. "Oh. I have a bunch of metal in there too, which is swaying my spine to the side, and my lungs are not awesome."
Considering the extent of her illness, I ask her if she'd consider employing an egg donor or surrogate to have a child, and she brings up an issue that's often overlooked. Namely, that not all religions are OK with every fertility innovation available. Flynn describes herself as very Catholic.
"I know what my faith is, and they are not supportive of egg donors or surrogates," she says, tearing up. (She assures me that she's still smiling.) "I'm left wondering where my place is here, with my faith, with my cancer, and with children ... Maybe I'm just the most amazing aunt to people. Maybe I'll become a foster mother."
Cancer is a terrible disease, but in many ways its freeing to say, what do I really want? What's important to me?
Flynn comes across as naturally nurturing (she once baked 30 pies in 30 days for a fundraiser). She's highly involved with advocacy work, and serves on the Welcoming Committee of Stupid Cancer, an organization that supports young adults after diagnosis. Her life is brimming with love and meaning.
Of the immense pressure young patients sometimes feel to manage not just their cancer but their futures, too, Flynn has this to say:
"When you have cancer, you have permission to just toss — excuse my French, but you can toss all that sh*t aside and do what matters to you. Because if you have five years left, you should make it the best five years you can. If you want to have a baby in that time, or if you want not to have a baby and travel the world, that's OK too. Cancer is a terrible disease, but in many ways its freeing to say, what do I really want? What's important to me?"
When Wellbeing And Fertility Are An Either/Or Situation
Beyond the stories represented here, I spoke to Lainie Jones, 33, who lives with chronic cancer (she was diagnosed with Li-Fraumeni syndrome at The University of Texas MD Anderson Cancer Center). Ultimately, she and her husband were “more concerned about her well-being than her ability to have children,” and she elected for a hysterectomy. Jones is involved with the American Cancer Society and Hope Lodge. "There are so many ways for women to be happy and to have a meaningful life," she says.
Valerie Reiss was diagnosed with Non-Hodgkins Lymphoma at 31. She was so terribly ill, she didn't consider fertility preservation for one second. "I feel like it was the right thing," she tells Romper. She now has a four year old, born when she was 40.
Cancer and parenthood both deal in an unknowable future
Fertility preservation is still a relatively new option for cancer survivors. Only recently have clinics begun streamlining the process for patients, who often struggle to manage the logistical and financial aspects alone. A split-second decision can determine whether your eggs are frozen, but where motherhood is concerned, the science is only a small piece of it.
I think often of Katie Davis packing lunches for her kids, and Libbi-Diane Flynn baking pies in support of young cancer survivors. Cancer takes and takes, especially from young women. Medical advances have given cancer patients and their doctors more choices when it comes to fertility. Nevertheless, as I learned from hearing these stories, every woman is different, with unique passions and drives when it comes to motherhood. Cancer and parenthood both deal in an unknowable future; after diagnosis, each of these women were on a fast track to answering, as Flynn puts it, "What's important to me?"