“You pay the price for having cancer over and over again.”
Mai Nguyen’s words are loaded with sorrow as she speaks about her 17-year-old daughter, Taylor Tran, who is dealing with fertility concerns more than a decade after she survived late-stage cancer.
It’s easy to understand the exasperation Nguyen feels: Her daughter was diagnosed with stage 3 single-cell sarcoma of the kidney when she was 2 years old and was treated with intense chemotherapy and radiation. Now, the treatments that saved her life have put her into early menopause.
“It’s been traumatic,” Nguyen said. “We’ve tried so hard to allow Taylor to have a normal childhood and this feels like one more thing cancer has taken from her.”
Stories like Taylor’s inspired Seattle Children’s urologist Dr. Margarett Shnorhavorian to tackle a challenging area of research that was largely uncharted more than a decade ago. Since then, she’s helped change perspectives and protocols for fertility preservation in childhood cancer survivors.
The end of a rainbow
Shnorhavorian’s passion stems from the encounters she’s had with the families of childhood cancer patients since starting her practice 12 years ago. She often spoke with families who’d just received a devastating diagnosis about the importance of fertility preservation.
“One thought was that families wouldn’t want to think about fertility when they were trying to deal with the chaos of cancer,” Shnorhavorian said. “But when I brought it up, I saw the tone in the room lift. They were grateful we were talking about their life after cancer, because it meant we believed they would have one. It was like glimpsing at the end of a rainbow.”
At the time, there was little information providers could offer about how patients’ fertility might be affected by various cancer treatments. Families couldn’t find the answers they desperately wanted.
“Initially, I thought if we brought up sperm banking and an adolescent didn’t want to talk about it, we should just end the conversation there,” Shnorhavorian said.
That was until a study led by Shnorhavorian changed her mind. The study surveyed over 400 adolescent and young adult cancer patients finding that a significant portion had never discussed their fertility preservation options with their care team before starting treatment.
“I learned not to take ‘no’ for an answer when a young patient didn’t want to think about it. We have an obligation to explore the subject and remind them that, even if they are not thinking about their future fertility, we are thinking about it for them,” she said.
A game-changer in the field
As Shnorhavorian set out to establish her research program, she was keenly aware of the hurdles she’d need to overcome to study fertility in a pediatric population.
First, recruiting enough participants to study the effects of cancer treatment on fertility would be difficult. Childhood cancer is relatively rare, so there were fewer eligible patients to draw from.
Also, many providers were uncomfortable discussing fertility issues with patients and their families who were, understandably, focused on survival. If adolescent and young adult participants did enroll, it would be difficult keep track of them because they change addresses frequently.
Shnorhavorian also had to make study participants comfortable contributing specimens such as sperm samples.
“The adolescent and young adult population is unique, so we developed research methods tailored to their needs,” she said.
They created a data collection system where patients could participate wherever they were located. They could have blood drawn in their dorm room or collect their sperm sample at home and send it in the mail, rather than going to a clinic.
“That was a game-changer in our field,” Shnorhavorian said.
New research for male cancer survivors
Today, thanks to her innovative research methods, Shnorhavorian is leading a multi-site study to investigate the effects of chemotherapy on boys and men who have survived osteosarcoma, a common type of bone cancer.
“When I started, there was limited research on male fertility, mainly because everyone had been lulled into a false sense of security thinking boys can sperm bank. But that is not an option for pre-pubertal males,” she said.
According to Shnorhavorian, there are still no options for young boys to preserve their fertility.
“I chose osteosarcoma because it was a population of men who would not have fertility impairments due to other therapies, like radiation, or their diagnosis. We hope the lessons we learn studying this disease can be applied to other cancers.”
Patients are being recruited for the study from 178 Children’s Oncology Group institutions in the U.S., Canada and Australia.
Shnorhavorian and her teammates in Seattle Children’s Center for Clinical and Translational Research are hoping to identify biomarkers of fertility risks and genetic susceptibility to fertility impairments and better understand of sperm development and how cancer therapies modify sperm DNA.
By studying these predicting factors, Shnorhavorian hopes to shed light on why some cancer survivors become infertile after treatment, eventually, leading to preventative interventions.
When Taylor learned she was going into early menopause in February 2019, she decided to freeze her eggs. She feels grateful for the opportunity even though several aspects of the fertility treatment were difficult and she often felt isolated.
“My cancer treatment gave me a second chance at life, but that doesn’t mean I shouldn’t get to have the same experiences others have,” Taylor said.
Shnorhavorian hopes her research will continue to grow so providers can, one day, offer cancer patients new opportunities to preserve their fertility before treatment or treat their cancer without harming their reproductive health.
“It is our obligation to give our patients hope,” Shnorhavorian said. “We have a long way to go to offer fertility preservation to every child, boy or girl, but from my standpoint, it’s no longer a question of ‘Should we do this?’ but rather ‘How do we do it?’”
Nguyen finds the idea exciting.
“I want to see other kids, like Taylor, have the opportunity to raise their own genetic children,” she said. “It would be amazing if researchers can find a way to cure them without taking away that experience.”
To learn more about the clinical trial Dr. Shnorhavorian is leading for osteosarcoma survivors, please visit the study page on our website. For more information on clinical trials at Seattle Children’s, please visit our current research studies page.