In a fetus, germ cells are cells that should become sperm in the testicles or eggs in the ovaries. Sometimes these cells don’t travel to the right part of the body and end up forming a tumor. These tumors can be either benign or malignant, meaning they can spread to other parts of the body. Malignant tumors are cancer.
One way to classify germ cell tumors is based on where they form. Most malignant germ cell tumors are gonadal, meaning they’re in either the ovaries or testes. They can also form in the brain’s pineal gland, near the pituitary gland. Other places they form include the:
- Back
- Coccyx, or tailbone
- Mediastinum, the area between the lungs
- Neck
- Sacrum, a large bone in the lower spine that forms part of the pelvis
Germ cell tumors are also defined by how they look under a microscope and/or the hormones they produce.
Teratomas are usually benign, but some are malignant. Teratomas of the tail bone are the most common germ cell tumor found in children, and are about four times more common in girls than in boys.
Germinomas make the beta-human chorionic gonadotropin hormone. Those that form in the ovaries are called dysgerminomas, while ones in the testes are seminomas. They can also appear outside the ovaries or testes. In these cases, they’re simply called germinomas.
Non-germinomas include:
- Yolk sac tumors, also known as endodermal sinus tumors. They can form in the ovaries, testes or other parts of the body. They are the most common type of testicular cancer in infants and children.
- Embryonal carcinoma. These are malignant and most commonly found in the testicles, but can spread to other parts of the body.
- Gonadoblastomas, which are rare, almost always benign tumors associated with abnormal development of the reproductive organs.
- Polyembryomas. They are a very rare, aggressive type of germ cell tumor that is usually found in the ovaries.
Childhood germ cell tumors risk factors
There are several factors that seem to increase the risk of a child developing a germ cell tumor.
Certain genetic conditions are tied to increased risk for specific types of germ cell tumors:
- Klinefelter syndrome may increase a person’s chances of developing a tumor in the mediastinum, the area between the lungs.
- Swyer syndrome may increase a person’s chance of developing a germ cell tumor in the ovaries or testicles.
- Turner syndrome may increase the risk of ovarian germ cell tumors.
In addition, having an undescended testicle increases the odds of a male developing a testicular germ cell tumor.
A family history of germ cell tumors also increases the chance that someone will develop a germ cell tumor.
In rare cases, childhood germ cell tumors can be passed down from one generation to the next. Genetic counseling may be right for you. Visit our genetic testing page to learn more.
Learn more about childhood germ cell tumors:
Germ cell tumor survivor: MD Anderson helped me get back to doing what I love
I’ve been teaching some form of band since I graduated from high school in 2015. By the end of that same year, I was already instructing some of my former classmates. Then I moved to Huntsville to study music, and I started teaching at a different school near the university. But every summer break, I’d return to Houston to teach marching band and percussion at my old campus. It’s just something I love to do.
That’s why the summer of 2021 was both really great and really terrible. The great part was that I’d finally landed my dream job, right after graduating with a bachelor’s degree in music education. I was going to be the full-time percussion director at a Houston-area high school. I was so excited!
But just a few weeks before classes started, I learned that I had a pineal germinoma — a type of germ cell tumor — in my brain. I was diagnosed the day after I turned 24. Happy birthday, right?
I wasn’t really worried that I would die, but I was really scared and a little in shock. Luckily, my parents steered me toward MD Anderson. Both of them are medical professionals, so I knew they’d only send me to the best. And they were right. MD Anderson helped me get back into the classroom where I belong — and return to doing what I love.
My germ cell tumor symptoms
I started noticing symptoms of my germ cell tumor a few weeks before my diagnosis. I was having frequent headaches and sometimes blurred or double vision.
I let my dad know because he’s an ER physician. I texted him to describe what was going on, then asked him what I should do. He said to come to his emergency room and we’d do a CT scan.
I followed his suggestion. That’s when we both found out I had a brain tumor. My dad was one of the first people to see it. He told me later that having to tell me I had a brain tumor officially made it his worst day ever. That makes two of us.
My germ cell tumor treatment
My parents contacted MD Anderson almost immediately. I was admitted to the hospital right away and had a procedure to drain fluid from my brain the next day. Interestingly, that turned out to be the only surgery I’d have to treat my cancer.
Next, I had six rounds of chemotherapy, a stem cell transplant using my own cells, and a six-week course of radiation therapy. Those therapies shrank my tumor so much that it’s almost undetectable now. My doctors decided it would do more harm than good to try to remove the remainder, so we’re just watching it carefully. I return to MD Anderson every three months to make sure it’s stable.
None of us was very familiar with stem cell transplants before my diagnosis. It was only later that I learned they’re normally used to treat blood-based cancers like leukemia and lymphoma. That made it seem kind of weird I had one to treat a germ cell tumor in my brain. But my MD Anderson doctors assured us that studies had shown this treatment has one of the highest success rates for my exact type of cancer. We all trusted them, so we went with their recommendations. The results speak for themselves.
My life today, after germ cell treatment
Today, I feel amazing, and all of my symptoms have resolved. Unfortunately, that wasn’t the case while I was still undergoing cancer treatment. The stem cell transplant alone required me to be in the hospital for 30 days. That wasn’t really fair to my students, so I had to resign from my dream job.
Still, I was able to land another job at a different school district this summer. Now, I teach both middle and high school students in band, percussion, trumpet and euphonium.
I’m not focused exclusively on percussion right now, but I’m still hopeful I’ll get back to that again someday. For now, I’m just glad to be back where I belong: in the classroom and teaching music.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
MD Anderson's Children's Cancer Hospital
Why choose MD Anderson for your germ cell tumor treatment?
At MD Anderson's Children's Cancer Hospital, we know your child's health and well being are your number one concern. Our renowned experts customize your child's care for childhood germ cell tumors, utilizing the most advanced treatments and techniques with the least impact on your child's growing body. As part of one of the world's most active cancer centers, Children's Cancer Hospital has remarkable experience and skill in these types of cancer. This can make a difference in your child's outcome.
Customized care
A team of specially trained physicians follows your child throughout treatment, all the way to survivorship. They communicate closely with each other, and with you, to ensure comprehensive, personalized care. They are supported by full complement of health care professionals dedicated to your child's treatment, including nurses, physician assistants, therapists and others.
Children's Cancer Hospital offers clinical trials for innovative new treatments for soft tissue sarcoma. Behind the scenes we are working on groundbreaking basic science research to change the future of pediatric cancer.
Treating the whole child
Children's Cancer Hospital is designed just for children, with a full range of services and amenities that help make the child and family's experience as comfortable as possible. We go beyond medical care to deliver a comprehensive experience that treats the whole child.
And at Children's Cancer Hospital, your child benefits from the resources and expertise of one of the nation's top cancer centers.
What I learned from that time was resilience, faith and love. I realized how strong I was.
Motivating awareness after a germinoma diagnosis
When Chase Jones was an 18-year-old baseball player at The University of North Carolina, he was diagnosed with germinoma, a type of brain tumor. The rest of his team shaved their heads in support.
Their gesture had a huge impact on Chase and led him to start the Vs. Cancer Foundation. The organization empowers sports teams, from little league to the pros, to raise awareness and money in hopes of ending childhood cancer.
Since it started in 2013, Vs. Cancer has raised more than $1.5 million for children's hospitals and cancer research. They've worked with The University of North Carolina, Duke University, Texas A&M University and the Seattle Mariners, among others.
"Every age, every sport, every form -- college, high school, youth -- we've given them the platform to make a difference," Chase says. "As a cancer survivor, I couldn't be more excited about that."
Finding hope during pineal region germinoma treatment
One day after baseball practice, Chase walked off the field with a sharp headache. It was unlike any pain he'd known before. He never thought it was a brain tumor symptom.
Chase was diagnosed with stage four pineal region germinoma. This type of tumor starts in the center of the brain and had metastasized to his spine.
There were few treatment options for him close to home. So, after a series of surgeries, chemotherapy and radiation at a North Carolina hospital, Chase came to the MD Anderson Proton Therapy Center.
Despite being far from his friends and family, Chase felt at home right away.
"The greatest feeling was walking in knowing I would walk out cancer-free," he says.
Helping others beat the odds
Today, Chase is 26, cancer-free and helping athletes help kids with cancer.
"Everybody has been affected by cancer, and athletes have a platform within their communities. They can do so much because of the position they're in," Chase says.
Through Vs. Cancer, teams are encouraged to host a creative fundraising event. Examples include a head shaving event, 100-inning game, relay race, kickball game, or just adding a yellow ribbon to the jerseys. Then, teams make a donation.
"It's about showing athletes that they can make a difference," Chase says.
"I don't know why I survived cancer. I don't know why I defied the odds. But because of that, I will be doing this as long as there are kids battling cancer."
