Fertility Preservation FAQ

Even as cancer patients are living longer and better lives, a downside of treatment can be reduced fertility. Many patients expect to grow into adulthood and eventually have kids of their own. It can be devastating to come to terms with the fact that they will never be able to build a biological family; we see so much grief in that. Fortunately, even though the field of fertility preservation is fairly new, we have more tools than ever to intervene before, during or after a child’s medical treatment to preserve their healthy ovarian tissue, eggs, sperm or even embryos for a future pregnancy.

Preserving fertility is the new standard of care when possible and appropriate for children with cancer or other conditions whose treatment will reduce fertility. The latter includes patients getting a bone marrow transplant (which includes sickle cell patients), those receiving highly toxic chemotherapy for cancer-directed therapy, those receiving radiation to their pelvis, some medications to treat kidney and rheumatologic diseases or those undergoing some gender-affirming treatments, among others.

We provide a personalized, detailed risk assessment that takes into account the patient’s sex, any previous treatment that may affect fertility, what treatments they are planned to receive and how toxic they are, lab testing and more. The ability to do this risk analysis and describe personalized fertility treatment options is fairly new. It was just made possible by new publications in the last year regarding the pediatric, teen and young adult populations. We also do a thorough exam that includes questions to help determine if the patient is sexually mature and whether they are mentally mature enough to discuss and participate in fertility preservation options.

Our goal is that every patient who receives therapy that affects their fertility has the option to discuss this with our team. Approximately 30 to 40 patients per year will proceed ahead with some sort of fertility preservation procedure.

In a survey about the importance of fertility preservation to women of childbearing age recently diagnosed with cancer, 78% reported that the possibility of preserving their fertility was instrumental to coping before and after treatment. And while we expect younger children to have a smaller interest, naturally, we often find patients saying how glad they are they were asked to consider it so they could make a choice they were happier with later.

It’s a big issue for parents too. They become very emotional when talking about their child being able to one day have their own family. It gives them hope and helps them cope during their child’s treatment.

For patients assigned male at birth, we can offer sperm cryopreservation. Typically for adolescents assigned male at birth and who have reached the appropriate level of sexual maturity, I have a conversation about masturbation and ejaculation to get the sperm, with some patients needing less support and education than others. We try to get them to an outpatient clinic for semen collection, although if they are inpatient, we have the patient collect the semen specimen inpatient and transport it within 30 minutes to the UW Male Fertility Lab or Seattle Reproductive Medicine (it has to be processed within an hour). Some males can’t get an erection and ejaculate, and in those situations, one of our surgeons can remove a piece of their testicular tissue and send it to the UW Male Fertility Lab Clinic where they can “milk” the tubules to retrieve the sperm. This is called testicular sperm extraction (TSE).

For patients assigned female at birth, we can offer ovarian tissue cryopreservation (all ages) in addition to egg preservation and storage, which has been around for over 30 years and has been widely done since 2012. Ovarian tissue cryopreservation is very new and offered here at Seattle Children’s.

These options are explained in detail in this video.

The timing of fertility preservation depends on the patient’s medical condition and which treatments/medicines are planned or underway. For example, sperm cryopreservation should be done before chemotherapy starts, because chemotherapy can damage the sperm DNA, affecting its ability to fertilize an egg. Some patients will delay medical treatment for a brief time (a day to several weeks) to start fertility preservation. Others can couple procedures for their disease and fertility preservation together (one anesthesia and operating room visit instead of two). Or they might slot fertility preservation into their ongoing cancer-directed treatment; for example, once they are in remission and recover their blood counts, we can get them into the operating room to collect ovarian tissue. When they’ve healed, they go right back into their cancer-directed therapy.

For prepubertal females, who have not yet had their first menstrual cycle, we lacked an approved mechanism for fertility preservation two years ago. But today we have the exciting new option of ovarian tissue cryopreservation for girls as young as 12 months of age. It’s a new way to remove the ovary, preserve it and then reimplant the tissue back in the future when a patient is ready to start family building. We’ve performed ovarian tissue cryopreservation at Seattle Children’s for 16 patients now, ranging from 1 to 22 years old. There’s also a method being developed where eggs can be matured and collected from the ovarian tissue outside the body. In that case, the ovarian tissue wouldn’t necessarily need to be reimplanted, which has benefits for some patients. That science is moving along quickly.

For prepubescent males, who are not producing sperm, we don’t yet have a good fertility preservation method. But we’re doing some exciting work. We just opened an experimental protocol that is in its very earliest stages (experimental and clinical trial) and will allow us to do testicular tissue cryopreservation, with the hope that at some point in the future the testicular tissue we collect can be used to create healthy mature sperm. We can’t guarantee this will work to allow patients to create a family, but the technology changes all the time so we may be buying ourselves some time for the science to be developed. There’s no risk in harvesting this tissue; it’s a small piece (the size of a pencil eraser). I wouldn’t recommend it for a child who has a lot of circulating cancer cells, but for kids who have a solid tumor or no circulating tumor cells, it may be a potential option.

These advances in cryopreservation of ovarian and testicular tissue will be important to future brain tumor patients in particular, who receive such high amounts of chemotherapy that we often can’t offer any good options.

No. We regularly see patients up to their mid-20s. Our oldest patient is in his 30s. Our oncology team has an Adolescent and Young Adult Oncology program, which adapts to the unique needs of patients in this age group. It’s simple for us to get an override for a patient to be seen here. And we want to do that whenever there’s a clinical service we think is important to the patient or a cancer-directed therapy we offer that is only available here, or a cancer we commonly see that maybe isn’t seen in the internal medicine and adult oncology world.

There are a couple of really good reasons.

• Expertise. We are at the forefront in this field. It’s fast-changing, and even most oncologists don’t understand the current what, when and how of fertility preservation.
• Speed. Our team is set up to be integrated with other specialists within Seattle Children’s and reproductive endocrinologists in our region, so that we can take action on fertility preservation incredibly quickly. And speed is often essential. Our close partnerships allow us to see a patient as soon as they are diagnosed, provide them with an individualized fertility risk assessment and offer the services they need, all within 24 hours.
• Cost. For procedures performed at Seattle Children’s, no family has been turned down due to cost. Whenever we get an insurance denial, we submit a letter and they routinely get approved. Also, private foundation grants are helping defray costs for families.
• Coordination and seamless care. Our program is intentionally structured for nimble coordination so all the required services — medical, financial and logistical — line up smoothly for the family. No community program can or will want to do this any time soon.

This is such a new field that most patients have quite a long time ahead of them before they will choose to have a baby. But based on what we’ve seen so far, it looks promising.

We will be part of upcoming clinical trials for testicular tissue cryopreservation. We are also at the forefront of advocating for insurance coverage for fertility preservation in Washington to make it accessible to more families. Washington state is behind a lot of other states in that we don’t have an insurance mandate yet but we are working with state representatives to support a new bill, H1640, and I’m feeling positive about the outcome.

Yes. Our fertility preservation services are for children who are Seattle Children’s patients. The reason for that is our limited capacity and high standards for quality care and service. At this time we are only resourced to work with our current partners who are committed to high standards of care, coordination and collaboration with us.

First, that they should know fertility preservation is available and accessible and that they should explore their options by having at least one visit or consult with a specialist. You can also advise them to ask their oncology provider questions:

• How will my treatment affect my ability to have children?
• Do you provide a fertility risk assessment?
• What are my best options for fertility preservation?
• Can you offer these options or would I need to go elsewhere?
  • If you offer these options, how do you handle the coordination between the medical and fertility preservation specialists and the family?
• How many children have you provided fertility preservation services to?
• How do you stay current with research and advancements in fertility preservation?

Because we’re a major center for bone marrow transplant, we get a lot of questions about what we can do for a patient before their transplant happens. We get calls from all over about that.

We are eager to talk with you. We hope to be a resource to other providers in this fast-evolving field where there still aren’t a lot of clear guidelines. If you have a difficult case or questions, please never hesitate to get in touch.

• Tyler.Ketterl@seattlechildrens.org
• Kristin.gard@seattlechildrens.org
• FertilityPreservation@seattlechildrens.org

You can also check out some of the resources at the bottom of this article.

Yes, we can schedule a brief phone call or discuss via email what options may be appropriate for them.

Additional resources for healthcare providers:

• Fertility Preservation Program at Seattle Children’s
• Comprehensive Fertility Care and Preservation for Patients Receiving Fertility Altering Interventions: A Grand Rounds presentation by Dr. Tyler Ketterl and Kristin Gard, ARNP: https://youtu.be/AFiX3xPYAB0
• Option to Freeze Ovarian Tissue Gives Young Cancer Patients Hope for Future Fertility, On the Pulse, Seattle Children’s.
• Oncofertility Consortium website: https://oncofertility.msu.edu/resources/fertility-options
• Save My Fertility – An online fertility preservation toolkit for patients and their providers: https://www.savemyfertility.org/pocket-guides/providers/fertility-preservation-children-diagnosed-cancer