March 9, 2010
While parenthood may not be top-of-mind for many teens, the possibility of losing the ability to have children due to cancer treatment is very concerning to many families. Thanks to our oncology and urology experts, patients at Seattle Children’s have options to preserve their fertility. Seattle Children's Kim Arthur talked with Dr. Margarett Shnorhavorian, a pediatric urologist and expert in fertility preservation, to find out more about these services.
When people think about children’s hospitals, fertility preservation probably isn’t the first thing that comes to mind. What exactly are we offering?
We are helping preserve the fertility potential of young boys who are undergoing treatment – such as therapies for cancer and hematologic disorders – that could leave them sterile.
How did this work get started?
Well, one of the success stories of pediatrics is that children are now conquering their cancer at increasing rates. However, it has come at the cost of long-term side effects, including decreased fertility, and we know that fertility preservation (through sperm banking) is very important to survivors of cancer.
How common is it for children’s hospitals to offer these services?
Other institutions are providing these services, but we truly are leaders in this area because we have a standard process to offer sperm banking to all boys over 12 who are at risk. We had a continuous performance improvement (CPI) event that brought all of the stakeholders to the table to plan the process, from the patient’s mom, to the urologist, to the nurse, to the oncologist. When you get everyone together, you come up with a much better solution than if you tried to figure it out by yourself. CPI is like a little think tank.
Who is eligible for fertility preservation?
Currently, we are offering the option to bank sperm to all boys over 12 who will undergo chemotherapy, radiation or surgery, which could harm their ability to become fathers someday. It has truly been a team effort with Oncology, Urology, the UW Fertility Lab and another local fertility lab to make sure they can bank before their therapy, which is the best time to ensure success.
Are all boys who go through these treatments at risk of becoming sterile?
One of the main challenges is that risk is not well-defined right now, and one of the focuses of my research is to better define the risk and identify future targets for prevention. A lot of attention has been focused on developing therapy, but we have only recently started to look at the effects of therapy. We aren’t very good at predicting who is going to be left infertile, so the best approach is to offer sperm banking to all boys.
Currently, the risk can range from 20% to 80%. But even a risk of 20%, which is defined as “low,” means that one in five boys will be sterile. And I can say as a mom that 20% certainly seems high to me!
Are we successfully reaching all boys over 12 with any risk?
We set the goal of offering sperm banking to all boys in the CPI event I mentioned, and we have achieved that goal. Not all boys choose to bank, but 19 of 27 eligible boys banked sperm in the past year, compared to only nine of 120 boys in the previous three years.
We’re planning to publish a paper about this success with CPI. Standardizing this process has allowed us to normalize sperm banking so that it becomes part of getting cancer care. It’s like standardizing the procedure for checking in at the airport! Now when a patient wants to bank sperm, we can just say, “Follow steps 1, 2, 3, 4 and you’re done!” Whenever anything is so emotionally charged, the more you can give it structure and make it doable, the easier it is to succeed.
The success is really a testament to collaboration with Oncology and the Adolescent and Young Adult (AYA) program. You just have to put sperm on the radar! Once you put sperm on the radar and offer a process to get patients to the sperm bank, patients want to do it.
How did you go about putting sperm on the radar?
It’s on our radar because patients have told us that it is important to their quality of life. There’s also good data to show that sperm banking improves hope and gives more resilience to patients who are going through cancer therapy.
Anecdotally, when I have gone into a room to talk with families about a surgical procedure called testicular sperm extraction (TESE), which is a surgical option to preserve fertility, everyone lights up. Sperm banking is a reminder that there is light at the end of the tunnel. It’s a very different message from just saying, “You have cancer, and we’re going to fight it.” This message is, “You have cancer, and we’re going to fight it… and we’re also going to make sure you have a great, fulfilling life.”
Are there any options for boys who are too young to bank sperm?
In boys under 12 who are peri-pubertal (around puberty), they may be eligible for TESE procedure to get sperm. However, we only have experimental options for pre-pubertal boys, such as preserving testes tissue with the hope that some day we’ll be able to mature those cells.
Could you tell me about your research?
I have an NIH grant in male reproductive health. The title of my grant is Outcomes in Reproduction for Childhood and Adolescent Survivors (ORCAS).
The focus is to identify and better describe the risk associated with chemotherapeutic treatments to develop future targets for prevention. That way you can give families better information than just saying that there’s a 20% to 80% risk. Clinical experiences really fuel my passion for the translational research, and the translational research then fuels the clinical services.
But in the meantime, before we have better data about the risk, we’re assuming that offering them the ability to bank is the standard of care. In the future, our research will go beyond sperm banking to find options for boys who have spermatagonial stem cells and don’t make sperm yet so they have no other option.
What are spermatagonial stem cells?
Spermatagonial stem cells are cells that have the ability to become a sperm. Boys are born with spermatagonial stem cells with the ability to form mature sperm at puberty. If they are given chemotherapeutic treatment, it could potentially shut down their ability to make sperm and that would leave them totally infertile.
Girls are born with all of their eggs, and they may lose some eggs and have a smaller ovarian reserve if they go through chemo, but boys may be more vulnerable. Even if, as a teenager, they think that they would never want to be a parent, studies have shown that cancer survivors have a higher risk of mood disorder and post-traumatic stress disorder if they have been left infertile.
Your research clearly goes beyond the immediate health of the child to look at lifelong health and outcomes. Do you follow up with these children as adults for your research?
Yes, in survivorship research, you track long-term outcomes of childhood survivors of cancer. It’s a challenging area because it’s hard to find patients after they leave Children’s. In my studies right now, the patients who I enroll are typically adolescents and young adults, and they’re hard to find. I’ve worked with the Fred Hutchinson tracking centers and we’ve utilized databases.
So you’re not necessarily working with patients here?
Not all of the subjects are current patients. Many of them were patients here, and now they’ve grown up. We want to know how they’re doing. It’s part of a partnership with Fred Hutchinson Cancer Research Center and the University of Washington.
It sounds fascinating!
I love it. It motivates me to continue this work.
Reproductive health can’t be an easy topic for clinicians to discuss with patients and their parents. How has the team been facilitating conversations about sperm banking?
We’re normalizing sperm banking by offering it to all guys over 12. We’re treating it like any other lab test. A good sense of humor always helps! But it’s not like it’s a topic that teens aren’t already talking about.
But do you have these conversations with the parents in the room?
Well, we know it’s important to patients and families, so we need to find a caring, compassionate and appropriate way to talk about it. I’m not actually the front line… the oncologists are the ones who address this. So kudos go to them for bringing up the topic.
But when they discuss a diagnosis and treatment, they talk about the risks, including cognitive deficits, cardiac deficits and pulmonary deficits, so loss of fertility is just one more risk to discuss. Just because it’s below the waist doesn’t mean that it should be a low priority.
If a family is interested in fertility preservation, a member of the AYA program talks about setting up an appointment with the sperm bank, and explains the steps in the process.
I get involved when there are questions about whether or not a person is a candidate, or if they have lost the ability to bank, or if they are too young. We talk about their options. I’m a pediatric urologist, so I’m used to talking about these topics all day.
What does pediatric urology encompass? Do you only do surgery, or is it also a medical specialty?
The great thing about pediatric urology is that we’re surgeons, but we take care of surgical and non-surgical disease. So we have the chance to follow patients through their development, which is a ton of fun.
Do you work only with boys?
Pediatric urology involves boys and girls, and it involves surgical reconstruction of the kidneys, ureters, bladder and genitalia. Girls have many urologic issues, like urinary tract infections, kidney infections, malformations of the kidney and bladder, malformations of the vagina. There are also disorders of sexual differentiation, which is when there are ambiguous genitalia.
What do you like about pediatric urology?
It’s about quality of life and prevention. The focus is not only on saving the lives of children, but also on striving to enhance the quality of their lives in the future.