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:
My mother was diagnosed with breast cancer when she was 94. My mother-in-law had it when she was in her 40s. But to my knowledge, there’s no history of brain cancer in our family.
So, when my son, Eric, was diagnosed with pineal germinoma — a type of childhood germ cell tumor — in his brain in August 2021, I was stunned. He was only 24 at the time and had just started his dream job as the new percussion director at a Houston-area high school.
I’ve been a registered nurse for 38 years. My husband is the medical director of a stand-alone emergency room. So, we’re used to taking care of others. But watching our son go through this was very difficult for both of us.
Fortunately, we took Eric to MD Anderson. And we were so impressed by the care and treatment he received there that I wrote an open thank you note to its president, Dr. Peter WT Pisters, and chief nursing officer, Dr. Carol Porter, to share with all of its employees.
My son’s pineal germinoma diagnosis
My son’s symptoms began around January or February of last year. Eric was never cross-eyed as a child, but we started noticing one of his eyes kind of drifting off to the side whenever we talked to him. He was getting self-conscious about it, so we encouraged him to have it checked out.
The ophthalmologist couldn’t find anything wrong. She diagnosed him with strabismus, the medical term for crossed or misaligned eyes. Eric accepted that and tried not to let it bother him. But the day after his birthday in August last year, Eric told my husband he’d also been having headaches and a little bit of blurry vision for two weeks.
My husband had Eric stop by his emergency room for a brain scan. It revealed a 1-inch mass in Eric’s third ventricle, as well as significant fluid build-up on his brain.
My husband and I knew that MD Anderson is one of the best places in the country to go for cancer treatment. So, we took our son there immediately. Eric was admitted to MD Anderson’s intensive care unit. Neurosurgeon Dr. Betty Kim performed a procedure to drain the fluid from his brain the next day. That’s when she formally diagnosed him with a pineal germinoma tumor.
My son’s pineal germinoma treatment
Neuro-oncologist Dr. Nazanin Majd explained that germinomas are caused by cells that don’t end up where they’re supposed to be in a developing fetus. So, Eric’s tumor could have been growing in his pineal gland before he was even born.
To treat it, she recommended six rounds of intravenous chemotherapy. This shrunk the tumor by almost 90% but didn’t kill it completely. So, Dr. Majd recommended a six-day cycle of high-dose chemotherapy, followed by a stem cell transplant and radiation therapy.
Eric had the transplant using his own cells on Jan. 24, 2022, under the supervision of stem cell specialist Dr. Yago Nieto. Then, he had 30 days of radiation therapy under radiation oncologist Dr. Chengyang Wang. Eric rang the bell to mark the end of his treatments on April 18, 2022. He’s been doing great ever since.
The hardest part of being my son’s caregiver
For me, the hardest part of this whole experience has been watching my son suffer.
The high-dose chemo that prepared Eric’s body for the stem cell transplant gave him loose stools for about two weeks. The chemotherapy was so intense that he had to shower and we had to remake his bed three times a day, just so his skin wouldn’t get burned by the secretions in his sweat. He also had to resign from his dream job and move back in with us so we could care for him — just a few weeks after starting it and getting his own place.
Eric always kept a really positive attitude, even when he was at his sickest. But it still broke my heart that he had to go through any of this. Sometimes, I would go in the bathroom and just cry, though I never let him see me do it.
MD Anderson helped my family stay strong
MD Anderson helped us all stay strong. That’s the reason I wrote the open thank you note: because every single staff member we encountered there — from the cleaning crew and food service employees to the doctors and nurses — was exceptional. They took wonderful care of both our son and us.
My husband and I don’t generally broadcast that we’re medical professionals. We’ve found that it sometimes makes people treat you differently. But everyone at MD Anderson made an extra effort to be accommodating and pleasant — even without knowing at first that we were medical professionals. I’m pretty sure they treat everyone that way.
We met a lot of employees during our son’s appointments, treatments and hospital stays at MD Anderson. They were all very professional and extremely helpful in addressing whatever questions or concerns we had. Everybody was so nice that I wanted to make sure they knew we had noticed.
That’s why I wrote a thank you note to MD Anderson's employees. As a retired nurse myself, I know that health care professionals tend to only hear the negative when they get feedback from patients. So, I wanted to make sure that they heard the positive, too.
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.
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."
