Frequently Asked Questions about Gestational Trophoblastic Disease

Q: What is Gestational Trophoblastic Disease?
A: Gestational Trophoblastic Disease is also called GTD. It is a group of diseases that begin when abnormal placental cells grow in the uterus after conception. GTD is always related to some part of pregnancy. It can develop from either from an abnormal, or molar, pregnancy or from a normal pregnancy. It is often the result of an abnormal joining of the sperm and egg. GTD grows from the trophoblast cells in the placenta. Because it does, it make the pregnancy hormone beta hCG. Most of the time women are believed to be pregnant before the diagnosis is made.

Q: What are the symptoms of GTD?
A: There are several symptoms that can indicate a woman has GTD. A woman should see her doctor if she experiences any of the following symptoms:

• Unusual vaginal bleeding during pregnancy. At first the bleeding may appear watery with a small amount of blood in it. After a while the bleeding may be less watery with more blood in it.
• Anemia. Anemia results from a woman’s body being unable to replace red blood cells as fast as she is losing them.
• Unusual abdominal swelling.
• Severe vomiting.
• Overactive thyroid gland.
• Bleeding accompanied by severe abdominal pain.
•  Infection in the uterus causing vaginal discharge and cramping in the pelvis.
• Vaginal mass.
• Coughing up blood, dry cough, chest pain, or difficulty breathing.

Q: Can GTD be prevented?
A: GTD is very rare. But the only real way a woman can prevent herself from getting it is by never becoming pregnant. Women who do not want to become pregnant should talk to their doctor about safe and effective birth control. The decision to use birth control, though, should not be based on getting GTD because it such a rare disease.

Q: How is GTD diagnosed?
A: There are several ways to find out if a woman has GTD. Sometimes the diagnosis is made on the basis of a routine ultrasound. Other times, symptoms may trigger the suspicion of GTD. In that case, the doctor will take the medical history and perform a physical exam. The exam will include a pelvic exam. During the pelvic exam, the doctor will feel the vagina, rectum, and lower abdomen for lumps. The doctor will also feel the uterus to check for appropriate growth during a pregnancy.

Additional tests may also be needed for a diagnosis. These tests include:

• Beta-hCG Level. Human chorionic gonadotropin (hCG) is a hormone that is made from both a normal placenta and from GTD. Women who are pregnant or who have GTD have hCG in their blood and urine. When a woman has GTD, the hormone’s level will be higher than expected in a normal pregnancy.
• Ultrasonography. Usually when a woman is diagnosed with GTD she will have an ultrasound. The purpose is to make sure the diagnosis is correct. Ultrasonography uses sound waves to form a picture called a sonogram. Echoes sound different for benign tumors than for cancerous ones. A special computer transforms the echoes into images so that they can be viewed on a screen. There is a very characteristic appearance to the image made by GTD. It alone is often enough for a diagnosis.

Q: Should everyone get a second opinion?
A: Many people with cancer see another doctor for a second opinion. There are many reasons to get a second opinion, including:

• being uncomfortable with the treatment decision
• the type of cancer is rare
• there are several ways to treat the cancer
• not being able to see a cancer expert

GTD is a rare disease. It is also particularly difficult to treat when it’s in an advanced or poor prognosis stage. For these reasons, it’s very important to seek an expert in the field.

Q: How can someone get a second opinion?
A: There are many ways to get a second opinion:

• Your doctor may be able to recommend a specialist. That might be a gynecological oncologist, medical oncologist, radiation oncologist, or plastic surgeon. Sometimes these doctors work together at cancer centers or programs.
• The Gynecologic Cancer Foundation (GCF) has a hotline. You can reach it by dialing 1-800-444-4441. They can assist you in finding a gynecologic oncologist for a second opinion. You can also search for a gynecologic oncologist by your zip code. There is a tool for doing that called Find A Doctor.
• The Cancer Information Service number is 1-800-4-CANCER. By calling it, you can find out about treatment facilities. This includes cancer centers and other programs supported by the National Cancer Institute.
• You can get names of doctors from your local medical society. You can also contact a nearby hospital, a medical school, or local cancer advocacy group for names. Another way is to ask other people who have had the same type of cancer.
• The Directory of Medical Specialists lists doctors by state and specialty. It also gives information about their background. This resource is in most public libraries.
• For GTD, there are a few Trophoblastic Disease Centers in the United States including:

                    *the New England Trophoblastic Disease Center at Dana-Farber cancer center in Boston
                   * the John I Brewer Trophoblastic Disease Center of Northwestern University in Chicago

Many other large cancer centers have expertise in this disease as well. The USA hCG Reference lab at the University of New Mexico (New Mexico) is a specialty lab. It helps determine specific differences in the hCG test that can help further define the diagnosis of GTD.

Q: What are clinical trials?
A: Clinical trials are studies of new kinds of cancer treatments. Doctors conduct clinical trials to learn how well new treatments work. They also study what the side effects are. If new treatments look promising, they are compared to the current treatment. The goal is to see which one works better or has fewer side effects. People who take part may benefit from access to new treatments before the FDA approves them. Participants also help further our understanding of cancer. That helps future cancer patients.