“I am not done:" Diagnosed in pregnancy, one woman redefines what it means to survive.
Siobhan Huck measures the milestones in her breast cancer journey by the numbers.
Twelve is the number of different lines of chemotherapy treatments she has received. Eight is the number of surgeries. Seven is the number of clinical trials in which she has enrolled to test potential new treatments.
Seven is also the number of birthdays she has celebrated with her son, Crosby, with whom she was nine weeks pregnant when she was diagnosed on Nov. 12, 2012.
It was her first pregnancy, so new that she and her husband, Jon, had not yet told their friends.
College sweethearts at Penn State, they were looking forward to a due date that coincided with their seventh wedding anniversary.
But in those early weeks, Siobhan found a lump in her breast that became inflamed and painful. Her obstetrician, suspecting a cyst, ordered it drained. When no fluid emerged, a biopsy revealed that it was cancer.
The next several moments were a blur. Siobhan remembers being at work and talking to doctor after doctor, four in total, and being asked if she wanted to continue with her pregnancy.
It was a choice she never dreamed she would need to make. Breast cancer in pregnancy is rare, occurring in about one of every 3,000 pregnancies. Although she didn’t know it at the time, Siobhan had inherited the BRCA1 genetic mutation, which carries a high risk of breast and ovarian cancer.
Once, expectant mothers in Siobhan’s position would have faced an impossible choice: between saving their babies and saving their own lives. In 1988, a woman named Mary Beth Mathews was offered no option beyond ending her pregnancy until she came to what is now UPMC Magee-Womens Hospital for treatment. She was able to safely deliver her daughter and live one more year. Like Siobhan, she was 32 at the time of her diagnosis.
But clinical trials have advanced the field significantly in the past three decades. Within a week of discovering that she had cancer, Siobhan learned from Magee’s Division of Maternal Fetal Medicine that she could safely begin chemo starting in her second trimester.
On Dec. 14, 2012 — the first day of her second trimester — she started chemotherapy for triple negative breast cancer. On May 10, 2013, she doubled up on her appointments, booking an ultrasound at 7 a.m. and a chemotherapy appointment at 8 a.m. Ten minutes into her ultrasound, she was instructed to report to Labor and Delivery for an emergency cesarian section. Crosby was born that day, weighing in at an even 4 lbs. He spent three weeks in the neonatal intensive care unit before going home with his parents, and he has thrived ever since.
“I have fondness for the NICU and the smell of the hand soap,” Siobhan recalls. “It’s nothing but sweet baby memories.”
A few weeks after delivery, she resumed her final three doses of chemo. But despite the treatment, scans showed the mass in her breast had grown at an alarming pace. What started out at 1.8 centimeters at diagnosis had nearly quadrupled in months. Siobhan’s surgeon, Dr. Emilia Diego, scheduled her for an emergency lumpectomy.
Because the tumor had grown so rapidly despite chemotherapy, Siobhan decided it was time to think outside the box. She began participating in clinical trials, which explore potential new therapies that are not yet considered the standard of care.
“My cancer is a unique beast: triple negative and BRCA1. I have to do what I can, and we have to get creative,” she says. “The focus now is immunotherapy and treating this from an immunological perspective, and it’s very different. I have had a vaccine made out of my own cells. I mean, that’s something even five years ago was not even possible.”
The idea of addressing her disease with immunotherapies made sense to her. She was fascinated by a treatment that included PARP inhibitors, which she describes as “a spell check for your DNA. And that’s what I need; I need my DNA corrected, because that’s where it happens. It’s my mutation that’s causing this.”
Discovery of her BRCA1 mutation led to the decision to undergo a bilateral mastectomy in March 2014. Eight months later, the cancer spread to her left lung. Radiation treatments followed, as did enrollment in new clinical trials.
“I get about nine months on each trial, and that’s nine months I didn’t have before,” Siobhan says. “If I didn’t do the trials, I would not be here today.”
Not all include active therapies. In one, Siobhan was in the standard of care control group for a drug called Sacituzumab govitecan, sold under the brand name Trodelvy. But her doctor, Adam Brufsky, points out that the drug was approved in April by the U.S. Food and Drug Administration, which could double the survival rates of patients with metastatic triple negative breast cancer — meaning Siobhan may be able to take the drug that the trial was testing.
“Hopefully, we will change her story with drugs like this,” he says. Like Dr. Diego, Dr. Brufsky is also an oncologist with UPMC Hillman Cancer Center.
For Siobhan, the most important milestones are the ones she marks away from the hospital. She has seen her closest friends become mothers. She heard Crosby say his first words, bellowing “popcorn” at the top of his lungs like the vendors at baseball and hockey games. She saw him attend his first day of kindergarten, and then first grade, and now second grade. She rode her favorite roller coaster, Disney World’s Space Mountain, while hearing him yell, “wheeoohwheeeay” at the top of his lungs. She saw him master a bicycle, ice skate, and jump off a cliff into a river in Mexico.
“Every time I got bad news, I would just think: ‘I am not done being his mommy. I am not done.’ And I can’t believe I’m still here,” she says. “Besides cancer, I have a better life than almost anyone I know. This is only one part of my life; it’s such a small part of who I am.”
On Aug. 29, she turned 40, a number she never thought she would see. Somewhere along the way, she acquired a tattoo of the cartoon fish Dory on her wrist, a kind of permanent Post-It note with a slogan she can read whenever she needs to be reminded: “Just keep swimming.”
Dr. Brufsky is optimistic that the clinical trials to which Siobhan has dedicated herself will yield promising results for other people facing the same diagnosis.
“You don’t want people to just live a year. You want them to see their kids maybe go to high school, middle school,” he says. “I think in 2040, it’s going to be even different than that. We’re going to want them to go see the grandchildren. That’s what we want. And I think that’s where we’re going.”
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