Germ Cell Tumors (GCTs) in Children
A type of cell that forms as a
fetus (also called unborn baby or embryo) develops is called a germ cell. Germ cells
the cells that make the eggs (ova) in females and the sperm in males. Germ cell tumors
(GCTs) are made up of these underdeveloped cells. These tumors are rare. They may
cancer (malignant) or not cancer (benign).
GCTs grow in these parts of the
In the ovaries or
Most GCTs start in the ovaries or testicles (testes). These
Outside the ovaries or
These tumors are called
They start in the cells that make up ovaries or testicles, but as a baby (fetus)
develops, the cells travel to part of the body where they shouldn't be and grow
there, like the following:
- Brain (cranial)
- Area between the lungs
- Back of the belly or abdomen
- Lower spine (sacrum and
- Head and neck
The tumors come in different
This group of GCTs includes all GCTs that don't form in the
ovaries or testicles. Germinomas are the most common type of GCT that grows in the
Nongerminomas or nonseminomas
There are four types of nonseminoma germ cell tumors. This group
of GCTs is also called nongerminomas.
Endodermal sinus tumor
(yolk sac tumor).
This GCT is most often cancer (malignant), but
may also be benign (not cancer). This tumor most often affects the ovaries or
testes and the lower spine. They often grow fast. These make a hormone called
Choriocarcinoma. This kind of tumor is very rare. It's most often
malignant. It starts from a layer of the placenta. During pregnancy it may
spread (metastasize) to the baby and mother. When this happens, it's called
gestational choriocarcinoma. It most often occurs in young pregnant women. It
makes a hormone called beta-hCG (beta-human chorionic gonadotropin). A
choriocarcinoma can also form in a young child. It starts in chorion cells that
are still in the child's body. This is called nongestational
This type of tumor is usually malignant. It can spread
quickly. It doesn't grow in the ovaries. It most often forms in the testes, and
can form in other parts of the body, too.
Gonadoblastoma. Almost all these benign tumors form in the ovaries.
If not treated, over time they can become cancer.
Many germ cell tumors have more
than one type of malignant (cancer) cell in them. These tumors are treated based on
the cell type that is most common. They can form anywhere in the body.
These tumors contain several types of tissue. They can be either
mature teratomas, which are mostly benign or immature teratomas, which are often
malignant. They're the most common germ cell tumor in the ovaries. Sometimes
teratomas make enzymes or hormones that cause problems.
The cause of germ cell tumors isn't fully known. Some gene
defects passed on from parents to children (inherited mutations) may increase the
risk for germ cell tumors. Some genetic syndromes, like Turner syndrome, androgen
insensitivity syndrome, and Klinefelter's syndrome, are linked to a higher risk for
these tumors. GCTs are also linked to abnormal development of the male and
female reproductive systems. Boys born with undescended testicles (called
cryptorchidism) are at higher risk for germ cell tumors in the testicles.
Symptoms depend on the size of the
tumor and where it is in the body. Symptoms can also depend on whether the tumor is
making hormones. They can include:
- A lump or mass that can be felt or
- Belly (abdominal) pain
- Chest pain
- Trouble breathing
- Trouble with eyesight
- Pain in the lower spine
- Need to urinate often or trouble
- Trouble with bowel movements
- Increased thirst and urination
- Loss of appetite
- Increased hair growth
- Vaginal bleeding
- No menstrual periods
- Early puberty
- Being shorter than normal
- Abnormal shape or size of
- Weight loss with no known reason for it
- Nausea, vomiting, or both
The symptoms of germ cell tumors
can be a lot like those of many other health conditions. Make sure your child sees
healthcare provider for a diagnosis.
The healthcare provider will ask
questions about your child's medical history and current symptoms. A physical exam
be done, and close attention will be paid to areas with lumps, pain, or other symptoms.
Your child may need to see a cancer specialist (pediatric oncologist). Your child
need certain tests. The tests done depend on where the tumor is and can include:
Blood tests. These tests
check for signs of disease, look at liver and kidney functions, measure hormone
levels, and look for tumor cell markers (such as AFP and beta hCG).
Biopsy. A tiny piece
(called a sample) of tissue is removed from the tumor and tested for cancer
cells. This can be done during surgery or by using a needle to take out a sample.
biopsy is the only way to know for sure if the tumor is or isn't cancer.
CT scan. A series of
X-rays taken from different angles and a computer are used to make 3-D images of the
inside of the body.
MRI. Large powerful
magnets, radio waves, and a computer are used to make detailed images of the inside
of the body.
X-ray. A small amount of
radiation is used to make images of internal tissues, bones, and organs.
Sound waves and a computer are used to create images of blood
vessels, tissues, and organs.
After a diagnosis of germ cell
tumor, your child will need more tests. These help healthcare providers learn more
your child's overall health and the tumor. They're used to find out the stage of the
cancer. The stage is how much cancer there is and how far it has spread (metastasized)
in your child's body. A stage grouping is then assigned. In some cases, a stage grouping
isn't assigned until after surgery is done to remove the tumor.
Stage groupings give an overall
description of the cancer. A stage grouping is listed as a Roman numeral and can have
value of I (1), II (2), III (3), or IV (4). The higher the number, the more advanced
tumor is. Letters and numbers can be used after the Roman numeral to give more details.
The stage of a cancer is one of the
most important things to know when deciding how to treat the cancer. Be sure to ask
child's healthcare provider to explain the details of your child's cancer to you in
way you can understand.
Your child may be treated by a team
made up of several types of healthcare providers. Treatment choices depend on things
like the type of germ cell tumor and where it is. GCTs can be treated with any of
Surgery. This is done to
take out the tumor and an edge of nearby normal tissue (surgical margin). The organ
where the tumor is growing may also be removed. For instance, this may be an ovary
Chemotherapy. These are strong
medicines that kill cancer cells. They may be given by mouth, right into the blood
through a vein (IV), or in other ways.
Radiation therapy. These
are high-energy X-rays or other types of radiation. Radiation is used to kill cancer
cells or stop them from growing.
High-dose chemotherapy with a
stem cell transplant.
Young blood cells (called stem cells) are taken
from the child or from someone else (a donor). Then high doses of chemotherapy are
given to your child. This kills the cancer cells, but also causes bone marrow damage
and kills stem cells. After the chemotherapy, the stem cells are put back into your
child's blood. Over time, they rebuild the bone marrow.
Clinical trials. Ask
your child's healthcare provider if there are any treatments being tested that may
work well for your child. This allows your child to get the best treatment available
today, and may also be the treatment that's thought to be even better.
Treatment can cause side effects. Medicines and other treatments can
be used for things like pain, fever, infection, and nausea and vomiting. Managing
side effects is a key part of good cancer treatment.
With any cancer, how well a child
is expected to recover (their prognosis) varies. Keep in mind:
- Getting medical treatment right away
is important for the best prognosis. Cancer that has spread is harder to treat.
- Ongoing follow-up care during
and after treatment is needed.
- New treatments are being tested to
improve outcomes and to reduce side effects.
Talk with your child's healthcare providers about treatment choices.
Make a list of questions. Think about the benefits and possible side effects of each
choice. Talk about your concerns with your healthcare provider before making a decision.
A child may have complications from
the tumor or from treatment. Many are short-term and will go away after treatment
But some problems might be long-term and affect your child the rest of their life.
Side effects and some complications
- Damage to the brain or nervous system
that causes problems with coordination, muscle strength, speech, or eyesight
- Loss of appetite
- Tiredness that doesn't get better with
- Hair loss
- Nausea and vomiting
- Mouth sores
- Delayed growth and development
- Learning problems
- Problems with reproduction
- Return of the cancer
- Growth of other cancers later in
Talk with your child's healthcare providers about side effects linked
with your child's treatment. There are often ways to manage them. There may be things
you can do and medicines you can give your child to help prevent or control many
treatment side effects.
A child with a germ cell tumor
needs ongoing care. Your child will be seen by oncologists and other healthcare
providers to treat any late effects of treatment and to watch for signs or symptoms
the tumor returning. Your child will be checked with imaging tests and other tests.
your child may see other healthcare providers for problems caused by the tumor or
You can help your child manage
their treatment in many ways. For example:
- Your child may have trouble eating. A
dietitian may be able to help.
- Your child may be very tired. They
will need to balance rest and activity. Encourage your child to get some exercise.
This is good for overall health. And it may help to reduce tiredness. Ask your
child's healthcare provider what types of exercise are safe for your child.
- Get emotional support for your child.
Find a counselor or a child support group that can help.
- Make sure your child attends all
When to Call a Healthcare Provider
Call the healthcare provider if
your child has:
- Symptoms that get worse
- New symptoms
- Signs of infection, such as fever
- Side effects that don't get better
Ask your child's healthcare provider what signs to watch for and when
to call. Know how to get help after office hours and on weekends and holidays.
- Germ cell tumors may be cancer (malignant) or not cancer (benign).
- The tumors usually affect the ovaries or testicles. They may also affect the brain,
mediastinum, retroperitoneum, sacrum, or coccyx.
- Symptoms depend on the size of the
tumor and where it is in your child's body. There may be a lump, pain, or other
- Germ cell tumors are diagnosed with
blood tests, a biopsy, and imaging tests.
- Treatment may include surgery,
chemotherapy, and radiation therapy.
Tips to help you get the most from a visit to your child’s healthcare provider:
- Know the reason for the visit and what you want to happen.
- Before your visit, write down questions you want answered.
- At the visit, write down the name of a new diagnosis, and any new medicines, treatments,
or tests. Also write down any new instructions your provider gives you for your child.
- Know why a new medicine or treatment is prescribed and how it will help your child.
Also know what the side effects are.
- Ask if your child’s condition can be treated in other ways.
- Know why a test or procedure is recommended and what the results could mean.
- Know what to expect if your child does not take the medicine or have the test or procedure.
- If your child has a follow-up appointment, write down the date, time, and purpose
for that visit.
- Know how you can contact your child’s
healthcare provider after office hours and on weekends and holidays. This is
important if your child becomes ill and you have questions or need advice.