Life and death decisions converge when pregnant women have cancer

When Sarah Joanis found out she was pregnant, she was so thrilled – and surprised – that she took 12 home pregnancy tests in a row and photographed the positive results. Just to make sure. Three months later, however, Sarah and her husband Kevin, of Plainfield, Ill., received another shock: Her ovarian cancer had returned. She was 29 years old.

One of every 1,000 pregnant women in the U.S. has cancer, a relatively rare but stark convergence of life and death.

For these women, treatment is possible. But it comes with a host of terrifying decisions for the family.

Do you start chemotherapy, which could harm the fetus? Or do you delay treatment, potentially risking the mother’s life?

Cancer and pregnancy “throws families into the worst scenario possible,” said Dr. Gideon Koren, director of The Hospital for Sick Children’s Motherisk Program at the University of Toronto, which advises pregnant and lactating women about drug exposure.

“I can’t think of many other situations in life so devastating and difficult.”

Sarah desperately wanted her baby. Kevin wanted to grow old with his wife even more. Ultimately, after many heart-wrenching conversations, they agreed Sarah and their unborn baby would go through her chemotherapy and ovarian surgery together.

It was a harrowing journey through uncertainty and doubt, one that is far from over. Sarah still is on constant watch for signs of cancer, but she and her husband have another, happier worry: caring for Natalie Elizabeth Joanis, their daughter, who recently celebrated her first birthday with two fistfuls of cake.

“She is now my purpose in life,” Sarah said.

Statistically, Sarah was an unlikely candidate for epithelial ovarian cancer. She was 26 and working as an electrical engineer for Ford Motor Co. in Detroit when she was initially diagnosed with a disease that typically targets women older than 55. She had no family history of ovarian cancer.

But on Super Bowl Sunday in 2006, Sarah woke up with a sharp abdominal pain that turned out to be a cancerous tumor. Doctors were able to successfully remove the growth, along with her left fallopian tube.

Because Sarah was young and wanted children – and everything else looked good – she didn’t undergo chemotherapy, which could have damaged her fertility.

The cancer scare gave Sarah a new outlook on life and for the next two years she seized her moments. She finished her MBA at the University of Chicago by commuting from Michigan on weekends, married her soulmate, went skydiving, traveled to Hawaii and moved back to the Chicago area, where she had grown up.

For months the couple tried to get pregnant, but a reproductive endocrinologist told them that Sarah’s one fallopian tube was blocked and that in vitro fertilization was their only option. To their astonishment, pregnancy happened naturally, prompting Kevin to rush out and buy a dozen pregnancy tests at Costco for confirmation.

Then, on April 4, 2008, during a routine pregnancy ultrasound, her doctor found more cancer. This time, it had spread across the pelvic region.

“I was supposed to be OK,” Joanis wrote on her blog, “I Want to Breathe” (sarahjoanis.blogspot.com), which chronicles her fight with ovarian cancer. “I was supposed to go on with life with one less fallopian tube. Big deal.

“But here I am now. Standing at the start of what is going to be the longest and hardest journey of my life.”

Treatment began with a risky surgery to remove her left ovary, which had been engulfed by the tumor. Doctors worried that if the uterus was stimulated during the operation, it might contract, triggering premature labor at 28 weeks.

Sarah, who had convinced herself Natalie would be born that day, was shaking before surgery began. Kevin was stoic and strong for his wife, but broke down privately afterward.

Even her gynecological oncologist, Sudarshan Sharma of Hinsdale Hospital, felt anxious. “Cancer surgeries are full of surprises,” said Sharma.

For three days following the procedure, Sarah experienced violent contractions, but she hung on to her pregnancy. Her doctors remained concerned.

“My heart was breaking during the surgery,” said Sarah’s ob-gyn, Julie Jensen of Edward Hospital in Naperville, Ill., who held the uterus – and felt Natalie kicking – throughout the operation. “We knew it was likely her only biological child.”

Then came another agonizing decision: whether to start chemotherapy.

“I leaned toward protecting Sarah first,” said Kevin, a chemical engineer. “I saw parenting as something we would do together. The thought of doing it without her was painful.”

For years, the medical professional has wrestled with how to treat pregnant cancer patients, and whether women with cancer should even continue their pregnancies.

The fear was that chemotherapy – drugs that kill off fast-growing cells – would damage the unborn child or that pregnancy itself might be stressful and exacerbate the condition.

But research has since shown that some forms of chemotherapy are safer than others. While children exposed to the powerful drugs in utero have a higher risk of stillbirth, birth defects, low birth weight and other complications, the risks decline after the first trimester, when most of the major organs have developed.

Still, there’s no long-term data on how chemotherapy can affect a fetus’ brain development or whether a child exposed in utero will have increased susceptibility to cardiac problems, fertility issues and secondary cancer – issues that still weigh on Sarah and Kevin.

Moreover, going through chemo while pregnant creates its own set of challenges. The fatigue was so punishing that Sarah slept 18 hours a day. When she was awake she vomited and her muscles ached, making it almost impossible to walk up the stairs. The fear of what the drugs were doing to the baby was constant.

“Up until the day Natalie was born, I wished I wasn’t doing chemo,” she said.

When Natalie was delivered early by Caesarean-section on Aug. 8, weighing just 5 pounds but otherwise healthy, “an instant calmness came over me,” Sarah said.

“You’re here now,” she told her daughter. “Everything I do is for you.”

That meant aggressively treating the cancer with more surgery and chemo. After Natalie’s birth, Sarah had a hysterectomy, in case the cancer had spread to other organs. It had.

The pathology results showed stage IIIC cancer – it was found in a lymph node – which has a five-year survival rate of 30 percent.

As a new mom dealing with postpartum hormonal changes, sleep deprivation and a colicky baby, Sarah weathered four more grueling rounds of chemo. This time, the side effects were so debilitating that she was unable to take care of – or even hold – her new baby.

“Cancer is sucking the life out of me,” she wrote in frustration on her blog.

But by Christmas, four months after Natalie’s birth, there was no sign of cancer in her body.

“We walk on eggshells with Sarah,” said Jensen, her doctor. “But there’s always someone who is the exception who will make it.

“Sarah is that person. Whatever you throw at her, she says, ‘I can do this.’ ”

These days, Sarah is eternally grateful for small moments – feeling Natalie’s hand on her cheek – and for finding a reservoir of strength, resilience and love she never knew she had.

Cancer’s threat still looms large. It’s why Kevin’s heart still jumps when Sarah calls after her regular doctor visit.

It’s why, as Sarah wrote, she wonders every day whether she will be able to watch her “little angel grow up and do wonderful things in the world.”

But cancer also is why the words “Miracles. Believe in them” are painted on the wall in gold letters over Natalie’s crib.