If you just found out that you or your child has a germ cell tumor, you may have a lot of questions about what it means and what comes next. There are many kinds of germ cell tumors and only some of them are cancer.
Germ cells don’t have anything to do with germs. They get their name from the word “germinate,” which means to begin to grow. That’s because as a baby develops before birth, germ cells move into place and become either eggs in the ovaries or sperm in the testicles.
Sometimes, a group of germ cells grows in a way that’s not normal. A tumor forms. This usually happens in an ovary or testicle. You can also get a germ cell tumor in the brain, chest, belly, pelvis, or lower back, but it’s not as common.
What Causes Them?
Changes in the genes of a germ cell can cause it to grow out of control, which leads to a tumor. Doctors aren’t sure what triggers that change.
Still, you may be more likely to a germ cell tumor if you have:
- An undescended testicle (one or both testicles haven’t dropped into the scrotum)
- Birth defects in your central nervous system, genitals, lower spine, and urinary tract
- Genetic conditions like Klinefelter syndrome or Turner syndrome, where you have an extra or missing sex chromosome
- Other family members who had germ cell tumors
What Types of Germ Cell Tumors Are There?
There are several, but five are more common than others:
- Teratomas – also called “dermoid cysts” – are not usually cancer, but they can be. They’re the most common germ cell tumors found in the ovaries. Usually, they’re treated with surgery.
- Germinomas are cancer. They’re called “dysgerminomas” if they’re in the ovaries and seminomas in the testicles. Nonseminomatous germ cell tumors are cancer and are found in the brain.
- Yolk sac tumors, (also called endodermal sinus tumors) are usually cancer. They form in the testicles and ovaries. It’s often an aggressive cancer that spreads quickly to the lymph nodes and other parts of the body. They’re typically treated with surgery and chemotherapy.
- Embryonal carcinoma has cancer cells that usually mix with another type of germ cell tumor. For example, embryonal carcinoma cells could mix with a teratoma and make it cancer.
- Choriocarcinoma is a rare cancer that happens in the placenta. It can affect both the mother and baby.
What Are the Symptoms?
It depends on the type of tumor and where it’s located. Common signs of germ cell tumors include:
- A mass on your ovaries or testicles
- Belly pain and swelling (caused by tumor)
- Bathroom troubles (a hard time pooping or holding in your pee, if the tumor is near your pelvis)
- Breast growth, pubic hair, or vaginal bleeding at an earlier age than normal
- Belly or chest pain
- Lump or a mass in the belly or testicles
- Testicles that aren’t the right shape or size
- Weakness in your legs (if the tumor is in the lower back)
- Wheezing or shortness of breath (if the tumor is near the lungs)
How Will My Doctor Test for One?
They’ll start by asking questions about your health and symptoms, and then do a physical exam. After that, you may get:
- A biopsy. Your doctor takes a sample of the tumor to test it for cancer and help guide your treatment.
- Blood tests. You may get different tests to check the overall health of your blood, kidneys, and liver. Your doctor may also test for signs of a tumor, like high hormone levels. And if they think you have a genetic condition, you may also get a genetic test.
- Imaging. CT, MRI, X-ray, ultrasound, and bone scans can show where the tumor is and whether it has spread.
How Are They Treated?
It depends on the kind of tumor you have, where it is, and if it has spread. Your doctor will also take your age and overall health into account. You may need more than one type of treatment. Your doctor will help you figure out the best approach.
Treatment options usually include:
- Surgery to remove the tumor. If it’s cancer, your doctor needs to get out all the cancer cells. That could mean removing the testicle or ovary and fallopian tube where the tumor is located.
- Chemotherapy (chemo), which uses drugs to kill cancer. It’s often used if the tumor is cancer and has spread to other parts of your body.
- Radiation, which uses high energy from X-rays or other sources to kill cancer cells. Newer kinds of radiation focus as close as possible on the tumor to help limit side effects.