Fertility Preservation Program

Fertility Preservation Program

If you have questions about fertility, please call Claire Carlson at 215-590-0432.

As treatments for childhood cancers have improved, more and more survivors are entering their reproductive years, and are thinking about starting families of their own. Unfortunately, impaired fertility can be an unwanted consequence of the treatments used to cure pediatric cancer.

Other non-malignant diagnoses such as lupus, nephrotic syndrome, and vasculitis may also receive treatments that impact fertility. Children with disorders of sexual development and transgender youth also face unique fertility related challenges. We're here to help all of these patients.

Children's Hospital of Philadelphia recognizes that fertility is an extremely important quality of life issue for our survivors. Thought must be given to whether a child's fertility is likely to be impacted by treatment. Ideally, this should occur before the start of therapy, when a window of opportunity may exist to preserve the patient's future reproductive potential.

The Fertility Preservation Program at Children’s Hospital is committed to offering fertility preservation options to patients and families across the institution that may be at risk for impaired fertility from the treatment of their primary medical condition. We are pleased to offer fertility preservation options to pre-pubertal and pubertal males and females.

Fertility preservation options for males

Sperm banking for pubertal boys

For males who have reached puberty, freezing sperm at diagnosis is the gold standard for fertility preservation and it has a well-demonstrated success rate. We recommend that sperm banking be offered to all eligible patients (defined as any male newly diagnosed with cancer who has reached puberty). Males as young as 12 years of age can sperm bank.

We work closely with the healthcare team to ensure that sperm banking is integrated into the patient and family education of newly diagnosed males. Our team facilitates this process by discussing sperm banking with families and by helping families to make appointments at a local reproductive endocrinology practice.

This Is Awkward: A resource for boys considering sperm banking

While preserving fertility is an important topic for families to discuss before cancer treatment begins, it can also lead to some uncomfortable conversations. In this video, former CHOP cancer patients discuss why they made the decision to bank their sperm, and describe what the experience was like for them.

  • Fertility Preservation for Boys Being Treated for Cancer

    Shawn: My cousin and I were watching a movie, and the person on TV said something about sperm banking. And I don't know why, but then he just looked at me. I'm like, "Yes, I did that too. It was awkward. I don't want to talk about it much." He's like, "Well, can I ask you a couple questions?" We ended up talking about it for like a half hour. So he was curious. I don't know why, but we talked about it, and I told him never to discuss it again.

    Jill Ginsberg, MD: CHOP's fertility program is really the first of its kind in the United States, and what we're proud of is that we're actually able to offer fertility preservation options to boys, pre-pubertal and pubertal, and also girls, pre-pubertal and pubertal. So it's really very comprehensive, and there really isn't another program like this in the country.

    Joe Gostomski: When they tell you your son is diagnosed with cancer, it's the last thing on your mind. It's the last thing you'd think about. You'd never, ever consider that this is something you have to do. And, you know, when I talked to Adam first about it, although he may not remember it, you know, his first reaction was, "Don't worry, I don't know if I'm going to ever have kids. I don't know if I want kids." You know, that's from his 15-year-old mind. But I was concerned. I would like some grandchildren eventually.

    Sue Ogle, RN: Part of what our job is is to make them feel comfortable, to let them know why this is important, and to sort of set the scene, really quickly. We usually have about 30 seconds to develop that relationship, and you have to do it in a way that feels right for each teen and their parents.

    Demetria Hamilton: At first, I was, like, a little taken aback. But then, you know, I did my research, and I felt like if I'm going to trust them in taking care of my son, then I need to trust them in this area, too. Because I feel like that's what they're doing. They're just looking at his future, his best interest. He's going through all this, but 10 years from now, 20 years from now, he might want to have a family. And because I was naïve or, you know, close-minded in something that I might not have felt comfortable with, it really doesn't matter. It's my son and his future.

    Jill Ginsberg, MD: It's really important for our patients to sperm bank at diagnosis, before they've received any treatment, because even a little bit of treatment can affect the sperm count. So we really try and have the patient make their decision at diagnosis and then do the sperm banking as quickly as possible so then we can start treatment.

    Larry: It's not painful at all. They take great care of you. You don't have to worry about anything when you go in there. I had not a fun time, but it was a comfortable time. And they'll make sure that you're comfortable with the whole process, and they'll ask questions that you're not sure you want talked about, but you should. You should do it, because you never know if you want to have kids or not. You're young, so you never really decide until you get older.

    Alex: I've always wanted to, you know, have a family of some kind, and it was just, you know--it was a very easy decision for me to just say, "Yes, I definitely want to have that option."

    Shawn: The process was really quick. You went there. You sat there for like 15 minutes, filled out a little bit of paperwork. They took you back, you did what you had to do, you came back, you left.

    Jill Ginsberg, MD: You know, the goal of chemotherapy is to actually kill rapidly dividing cells. Unfortunately, the sperm or the sperm producing cells are rapidly dividing. So chemotherapy can target those cells and, you know, destroy them. And so that's how boys can become infertile from their chemotherapy.

    Shawn: It didn't occur to me that one of the possibilities would be infertility. She was really cool about it, but, like, just the first thought of it is like, "Okay, you want me to do what, exactly?" I mean, it took me by surprise. But, like, in the long run, I'm really, really happy I did it now.

    Sue Ogle, RN: We acknowledge up front that this is a really embarrassing topic to discuss, and one thing that we try to assure all of our boys is that when we see them again — we will see them in clinic, we'll see them in the halls, we'll see them wherever they are — we won't be yelling across the waiting room or whatnot, "Hi. How are you? Do you remember me from sperm banking?"

    Adam: Kids my age and younger should know that it's a completely normal process, and it doesn't make you weird or anything. It's good to have it in the back pocket in case I do change my mind.

    Sue Ogle, RN: Approximately 85 percent of the boys that we approach do go on and sperm bank, and I think a lot of this really has to do with how we begin the discussion, how we continue it, and also the hope we bring.

    Mark Dority: I want him to have everything he wants to have. He has expressed that he wanted to have kids even before, you know, this had occurred. So, you know, I think that's part of my job, is to help him get to wherever it is that he's trying to get to.

    Jill Ginsberg, MD: They're dealing with a lot of information at diagnosis, you know, what treatment protocol they're going to go on. And then when we approach them about this sperm banking, it sometimes can feel overwhelming. But what we've heard mostly from our patients and our families is that it offers them hope, because if people are actually even thinking about this issue or thinking about the need to sperm bank for future fertility, they must really think things are going to be okay.

    Shane: I think that helped me out a lot, now that I think about it. Because, in my eyes, I was like it — was the end. But on the other hand, if someone's thinking that I can survive, so — if someone thinks I can survive, I should be thinking that, "Yeah, I can survive." And so, like, them coming to me and asking me about sperm bank, I think that really helped because that gave a positive thought in my mind, a positive idea.

    Shawn: I cannot put into words how happy I am that I made this decision, just the whole knowing that, like, I have that option now, even if I'm not fertile. It's just really relaxing to know that, like, if I can't do it myself, then my little guys can.
Transcript Transcript

Testicular cryopreservation for pre-pubertal males

Unlike pubertal boys, prepubertal males pose a particular challenge for fertility preservation. These boys cannot produce semen for cryopreservation by masturbation and they do not yet have mature sperm. The prepubertal testicle does, however, contain a small amount of the stem cells (parent cells) that, with the right signals, will eventually become mature sperm.

Promising research with animals in the lab has shown that testicular tissue can be removed and these stem cells, although few in numbers, can be extracted. These cells can then be reimplanted as is or matured and increased in number outside of the body before reimplantation. At this time, clinical applications of this science in humans are purely experimental.

Opening Door to Future Fertility

However, research is currently underway at CHOP that allows prepubertal boys to have a testicular biopsy at diagnosis and freeze the tissue for their potential future use. A small piece of the tissue is also being studied in the laboratory to help scientists determine how the germ cells in the testicular tissue should be handled so that the maximum number of sperm-creating cells can be obtained. Parents have indicated that they welcome an opportunity to potentially preserve their son's fertility, even if the science does not currently exist to use the tissue for this purpose.

 

Drs. Jill Ginsberg and Thomas Kolon

Opening Door to Future Fertility

Two CHOP researchers were on a team that proposes potential ways to avoid future infertility in boys who are treated with chemotherapy and radiation for childhood cancer.

Fertility preservation options for females

Oocyte (egg) and embryo freezing

We have developed a clinical and research partnership with Penn Fertility Care and Main Line Fertility to offer both egg and embryo freezing to our patients. While not an option for all of our females, there are opportunities to pursue this option when the patient's circumstances will allow. Hormones are used to stimulate the formation of multiple egg follicles. These eggs are then removed and are frozen for the patient's potential future use to achieve a pregnancy.

This method is becoming more and more widely accepted, and there have been hundreds of live births from frozen eggs. In a circumstance where the patient may have a partner, there is also the option of using the eggs to create an embryo, which can then be frozen for future use.

Ovarian tissue cryopreservation 

Embryo freezing and oocyte freezing require ovarian stimulation at diagnosis and are not appropriate for prepubertal girls or when delaying cancer therapy is not an option. An alternative approach is the cryopreservation (freezing) of ovarian tissue. This tissue can then be thawed and reimplanted at a later date, thereby restoring ovarian function. While still experimental, ovarian tissue cryopreservation is beginning to show promise as a viable clinical option.

Successful live births have been achieved in humans using frozen ovarian tissue, although the numbers are very small. As part of a research protocol at CHOP, we can now offer ovarian tissue cryopreservation to girls as young as 1 year of age who are at risk for infertility from their cancer therapy. As part of this study, a small portion of the ovary is surgically removed. Eighty percent of the tissue is frozen and stored for the participant's own use in the future. Any mature eggs in this tissue can also be extracted and frozen. The remainder of the ovarian tissue is used by researchers to explore ways to extract immature eggs from the tissue and mature them in the laboratory.

  • Fertility Options for Young Female Patients

    Rachel: She hadn't learned yet about how we have eggs in our body.

    Hannah: Well we, we just learned about that.

    Rachel: Yeah.

    Hannah: In health class right now.

    Rachel: And she's ten now, so they're learning about that in health class now. But she didn't know, so I had to have a conversation with her about…

    Hannah: It was a small conversation, it wasn't really that long.

    Rachel: I explained to her that every girl has eggs in their body and that these eggs eventually can become babies, and that her treatment can make it so that those eggs are no longer able to work. And so what they were going to do was take a piece of the organ that has the eggs in it and save it for her so that one day she could use them.

    Hannah: It was kind of a little confusing, but, I went with it. And it feels good. And feels right somehow. But…

    Jill Ginsburg, MD: We're curing more and more kids of their cancer every year. And they are surviving well into their reproductive years. Having to tell a survivor that they're infertile is probably the hardest discussion I have. And so our goal through this program is to have that discussion less and less frequently in the future by sort of intervening as early as we can to try and preserve a patient's fertility so that when they enter survivorship we have only good news to tell them.

    Katie: I think that the conversation about whether or not you want to preserve your fertility is very necessary. I would say that you always need to look forward to something in the future when you have cancer.

    Clarisa Gracia, MD: One of the most important factors in a patient's quality of life is the ability to have reproductive options and to have biological children. And so this has become a major quality of life issue for cancer survivors. I think it's very important that there are programs available for children and their families to pursue fertility preservation, to really give them hope for the future, and options to improve their quality of life.

    Farah: The doctor was really straightforward in our conversation about fertility like preservation. And she told me what to expect and that it doesn't always work, but there's like a hope that it does. And also she was very straightforward. She didn't sugarcoat anything which I appreciate.

    Sue Ogle, MSN: Probably one of the greatest things that we've learned from talking with our patients and families over the years is that no matter how uncomfortable this is, no matter what our worries, concerns, thoughts are, the patients want to talk about this.

    Christine: When you have cancer and you're receiving chemotherapy, it may seem like a lot and it may seem like a pain to do something additional with getting the egg retrieval or the ovarian tissue surgery, but once we made the decision, my doctors were very supportive and informative. And it was really clear. I think it just came to the point where whether I decided I wanted it. And after that the ball was just rolling. And it wasn't that hard to like figure out what we needed to do.

    Rebecca: This was definitely very scary to think that here was my future in front of me and what, what do I do with all this information? But it kind of solidified what I want in my life. And just made me really think on a deeper level than maybe I would have liked to. But yeah it was important.

    Sue Ogle: Even though they want first diagnosis and they want cure, they also want to know that their children will have the ability to have children if they so desire later on down the road.

    We need to continue talking about it as it’s a piece of who our patients are and who they will become as they move through the world of patient, survivor, and hopefully adult and possibly mother.

    Jill Ginsburg: There are really two options. One is egg freezing, where the patient is given medicines to sort of stimulate the production of their eggs. And then under general anesthesia those eggs are retrieved and frozen away. In cases where we don't have the luxury of time, we can do ovarian tissue preservation where under general anesthesia in the operating room, a laparoscopic biopsy of the ovary is done, and a small piece of ovarian tissue is removed and frozen away for the patient.

    Christine: I think it was definitely a wise decision to be part of this program, because although when I was 16 I hadn't expected to be in ovarian failure, now that I'm 21 and I am currently in ovarian failure, to have the option to have eggs in the bank is really reassuring. But I think afterwards when everything is said and done, I would have really regretted it if I didn't do it.

    Sandi: We've always spoken open and honestly, and I think we were both on the same page that given her heart desires to eventually have a family, that if there was something that modern day technology and research was allowing for, it was beneficial to, to go for that.

    Rebecca: So I am really happy that I did it because now I don't have to worry about, well you know, I'm like 20 and maybe I won't be able to have kids. Now I can push it out of my way and think about things like finishing college, and dating and just things that normal 20 year olds have to think about and not something out of the ordinary.

    Rachel: When she was in treatment, you can't help but think about her future. And you can't help but think about is she going to make it? Is she going to make it to be married? Is she going to make it to have kids? Is she going to make it to make me a grandmother? But now I think I've gotten to the point where she's going to have kids. I'm going to be a grandmother.

    Hannah: You might want to have kids when you're older. You might not have a chance to do it. And this is a good opportunity to do it.

    Ghazala: This is something that brings positivity to this whole negative situation and then to be honest with your child, because you know even though they seem young, they are capable of making the decisions.

    Farah: This fertility treatment it's definitely important for cancer patients. I mean like especially for pediatric patients too because like they have their whole life ahead of them and you need that choice too. I think everyone should have like a choice of being a mom. I think that's very important to give them that choice, because everyone else has the choice, and we shouldn't be left without it.

    Jill Ginsburg: Fertility preservation here at CHOP is really the first comprehensive program in a pediatric hospital. It’s the most comprehensive and we offer the most options to our patients and their families. We also have served as a model to other institutions.

    Sue Ogle: I think girls grow up thinking about being mothers at an earlier age. I think our society does that. I think that fertility preservation, the thought of being a parent later on is equally as important, we've learned, to boys and girls.

    Rachel: What are your hopes for the future?

    Hannah: Finish school, go to college, get married, well find a boyfriend, then get married, um, have kids, and then have grandkids, and hopefully go to heaven. 
Transcript Transcript