The shock of a new cancer diagnosis was still settling in for Isabel Nordby when she and her parents made a decision that could greatly impact the teenager’s future — if and when the time is right.
Before starting her chemotherapy protocol for Ewing sarcoma in April 2020, Isabel, then 15, had one of her two ovaries surgically removed and frozen. The surgery, known as ovarian tissue cryopreservation, was done in reaction to a harsh reality: Many of the powerful drugs and radiation procedures used to fight cancer and other blood disorders can also permanently harm a patient’s reproductive cells and tissue, jeopardizing their fertility.
In years to come, if Isabel has trouble getting pregnant, the frozen ovarian tissue can be thawed, reimplanted, and grafted to the remaining ovary. Within six months, the transplanted tissue should start producing hormones and releasing eggs. The process, which was approved by the American Society for Reproductive Medicine in 2019, has led to more than 140 live births.
Isabel was already scheduled for surgery to insert a portable catheter that would be used for chemotherapy and other infusions during her treatment at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, so the ovary removal was done concurrently.
“I’m so glad this was offered to Isabel at the time it was,” says Maria Nordby, Isabel’s mother. “We want our kids to have all the choices available to them when they grow up, and to not have cancer take them away.”
As improved childhood cancer treatments have resulted in more patients surviving into adulthood and desiring to start their own families, providing fertility preservation options to patients has become a vital aspect of pediatric cancer care. With this in mind, Dana-Farber/Boston Children’s has developed a formal Pediatric Fertility Preservation Program so that families like Isabel’s quickly understand what’s at stake and what can be done.
“Patients and parents used to only be referred for fertility counseling if they asked or were told about fertility options by their oncologist,” explains Dana-Farber/Boston Children’s nurse practitioner Katie Brodigan, MSN, FNP. “Now every family, regardless of the patient’s age, has a fertility consultation immediately after diagnosis. We want to be sure this is part of our standard treatment, not something you need to advocate for.”
Brodigan, who leads the consultations, developed the formal fertility preservation program at Dana-Farber/Boston Children’s with colleague and program director Lindsay Frazier, MD. They work in conjunction with a team that includes specialists in oncology, urology, gynecology, and reproductive endocrinology.
During initial family meetings, Brodigan provides education about reproductive health and an individualized risk of infertility based on a patient’s cancer type. There are several options that Dana-Farber/Boston Children’s offers pediatric patients; whether or not a patient has gone through puberty is a factor, as is the time frame for surgery.
“If the risk for infertility is going to be high, based on the type of cancer and the therapies used, it can make a decision about preservation easier,” says Brodigan. “I try to let the family lead me. Some parents don’t want to put their child through any additional surgeries, but because more families are aware of fertility issues these days outside of cancer, we find parents and patients are more open to considering preservation.”
Hope for the future
In Isabel’s case, Brodigan explains, the best option was clear. She had already gone through puberty, and was menstruating regularly, so was eligible to have either eggs or an ovary harvested for future use. Egg harvesting, the more established preservation method, can take nearly a month. But because Ewing sarcoma grows quickly in the bones and soft tissue, Isabel needed to start chemotherapy as soon as possible.
This in mind, the family chose cryopreservation — with Isabel’s ovary harvested at the same time her port was implanted. She had chemotherapy the next day.
“We found Katie extremely knowledgeable and reassuring,” says Maria Nordby. “We know ovary preservation is the newer process, but they feel they can get good results from it. Katie gave us hope, and you need to cling to that.”
Her cancer controlled, Isabel finished active cancer treatment in December 2020 and was back in school within a month. As her 17th birthday passed in July 2021, her family remained in regular contact with Brodigan. And while Isabel is not sure what her future holds, she likes knowing she has one more option available.
“I am someone who needs to ask a lot of why’s and how’s before I can fully comprehend a concept, so I’m glad that Katie and our Dana-Farber/Boston Children’s team is staying with us post-treatment and well into the future,” says Isabel. “There is a greater possibility I will one day be able to have a family of my own because of what Katie and many others like her have worked on.”