Germ Cell Tumors

Germ cell tumors are rare and complicated, and we don’t know exactly what causes them to develop. That can be frustrating, especially when you’re trying to sort through a lot of information to understand your child’s unique condition.

Sometimes, germ cell tumors cause symptoms. If the tumor is in their ovary or testicle, your child may have pain in their pelvis, belly, back or groin. If the tumor is somewhere else in their body, they might have trouble breathing (lungs), weak legs (low back), trouble peeing and pooping (pelvis) or a swollen, painful belly.

Some germ cell tumors secrete hormones that can cause your child to go into early puberty. Children assigned female at birth (AFAB) might grow breasts, pubic hair and get their periods. Children assigned male at birth (AMAB) might grow breasts (gynecomastia).

The good news is that germ cell tumors usually respond well to treatment, so the earlier you can get in to see us, the better.

Types of germ cell tumors

There are many different types of germ cell tumors. Sometimes, they’re benign (noncancerous). Other times, they can be malignant (cancerous). Benign tumors can get bigger, but they don’t spread from where they started. Malignant tumors can spread.

The types of germ cell tumors include:

• Teratomas contain tissue like teeth, hair, muscle and bone. They can be mature or immature. Mature teratomas (dermoid cysts) are usually benign and are the most common type of ovarian germ cell tumor. Immature teratomas are usually malignant and grow fast.
• Yolk sac tumors (endodermal sinus tumors) are the most common germ cell tumor in children. They contain cells like those in a developing embryo. They’re cancerous and spread fast to lymph nodes and other organs.
• Germinomas are cancerous and can develop in your child’s ovaries or testicles but are most common in the brain and spinal cord.
• Embryonal cell carcinoma is rare and cancerous. It often develops with other tumor types in a mixed germ cell tumor.
• Polyembryomas are rare and contain components that look like embryos. These fast-growing cancerous tumors are often mixed with other types of germ cell tumors.
• Choriocarcinomas are also rare and cancerous tumors. They contain cells that form the placenta during pregnancy. They can develop in the ovaries or testicles but often happen in the uterus. They can spread to both the fetus and the parent.
• Mixed germ cell tumors contain two or more types of cancerous germ cell tumors. They’re very common.

What to expect at your first visit

Your first visit with us is our chance to learn more about your child and what they’ve experienced. Your provider will start by asking a few questions, like:

• Does your child have any symptoms?
• When did you or your child first notice something was going on in their body?
• If they have symptoms, how have they impacted your child’s daily life?

We’ll also ask about your child’s overall health and their medical history. Then, we’ll do a physical examination to look for germ cell tumor symptoms we can see or feel — like lumps and bumps on your child’s body. And we’ll order some tests to confirm a diagnosis.

Testing for germ cell tumors

We’ll do several kinds of tests, including:

• Blood tests to check the amounts of enzymes, proteins or hormones in your child’s blood. High levels of human chorionic gonadotropin (HCG), alpha-fetoprotein (AFP) and lactate dehydrogenase (LDH) could be a sign of a germ cell tumor.
• CT scans and MRIs give us detailed pictures inside your child’s body and can show us where the tumor is.
• PET scans can show us where the tumor is and if it’s spread.
• Ultrasounds use sound waves to create pictures inside your child’s body. They can show if the tumor is solid or filled with fluid (a cyst).
• A biopsy lets us take a sample of tissue for a pathologist to look at under a microscope. Studying tissue samples helps us find out the kind of tumor your child has. If they have a malignant germ cell tumor, a biopsy can show us if it’s spread. Other times, we’ll simply remove the tumor with surgery instead of taking the sample.

We understand that your child may feel anxious as they go through these important tests. So, we’ll take time to explain why we’re doing them and what’s involved. We want your child to be as comfortable as possible.

Second opinions for germ cell tumors

Germ cell tumors are rare, so working with pediatric providers who have experience treating them is important. And you want those providers to be compassionate and connect with your child so they feel safe. A second opinion can give you the confidence that your child is getting the best possible care.

We know you’re anxious to get your child started on the road to good health, so we always try to schedule your child’s appointment with us as soon as possible, either in-person or virtually. A virtual visit is an excellent option if it’s hard to get in to see your child’s providers in person or if you don’t live nearby.

Meet Our Germ Cell Tumor Team

When you choose Cleveland Clinic Children’s, you and your child will work with many specialists with a single focus — helping your child with effective compassionate treatment. Your child’s team could include:

• Pediatricians.
• Pediatric oncologists.
• Pediatric surgeons.
• Pediatric urologists.
• Pediatric neurosurgeons.
• Pathologists.
• Fertility specialists.
• Palliative care specialists.
• Child psychologists.
• Child life specialists.
• Social workers.
• Art and music therapists.

If tests confirm your child has a germ cell tumor, their treatment will depend on a few things:

• What kind of germ cell tumor it is (if it’s cancerous or not).
• How big the tumor is and if it’s spread (the stage).
• Where the tumor is.

Surgery to remove the tumor and, sometimes, the affected organ is the main treatment for germ cell tumors. If the tumor is cancerous, your child might also have chemotherapy after surgery. Chemo uses drugs to destroy any remaining cancer cells or keep them from dividing. It can also be the main treatment if the tumor can’t be removed safely, or it’s spread to other parts of your child’s body.

For cancerous germ cell tumors, your child’s provider may also recommend radiation therapy, which sends high energy X-rays to the cancer cells to destroy them. For some kinds of germ cell tumors, radiation therapy is the best treatment.

If your child is scared to have surgery, our child life specialists can help. They’ll explain how to talk with your child or teen about an upcoming procedure. And they’ll show you how to support them emotionally throughout their treatment and recovery.

Fertility preservation

You may not be thinking about your child’s fertility right now, but it’s important to know that, sometimes, cancer treatments can affect their ability to have biological children in the future. Our providers will explain all the treatment risks and fertility preservation options with you, like storing (banking) sperm or eggs for later use.

Follow-Up Care

Our follow-up care starts with helping your child recover after surgery, but it doesn’t stop there. We’ll care for your child long after they’ve finished treatment. Your child will continue to visit their providers regularly to see how they’re doing and to check their overall health. We’ll also do tests to make sure a germ cell tumor hasn’t come back or there aren’t any signs of new health conditions that may develop after treatment.

Taking the Next Step

If your child has a germ cell tumor, you’ll want to work with pediatric healthcare providers who specialize in treating rare conditions. And you’ll want compassionate providers who understand how children and teens react to having a serious illness. You’ll find that combination of expertise and compassion at Cleveland Clinic Children’s. We’ll develop personalized care plans that also include support for your child and you as you manage their illness and any long-term challenges.