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Gestational Trophoblastic Disease - Introduction

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2016

ON THIS PAGE: You will find basic information about this group of diseases and the parts of the body they may affect. This is the first page of Cancer.Net’s Guide to Gestational Trophoblastic Disease. Use the menu to see other pages. Think of that menu as a roadmap for the complete guide.

The uterus is a part of a woman’s reproductive system. It is pear-shaped, hollow, and located in a woman's pelvis between her bladder and rectum. The uterus is also known as the womb, where a fetus (unborn baby) grows when a woman is pregnant. It has 2 sections: the cervix, which is the narrow, lower section; and the corpus, which is the broad, middle section. The fundus is the dome-shaped top section of the corpus. The uterine wall has 2 layers of tissue. The inner layer is called the endometrium, and the outer layer is muscle tissue called the myometrium.

About gestational trophoblastic disease

Gestational trophoblastic disease (GTD) is the general name for a group of rare tumors that occur during pregnancy in the fetal chorion, which is the outer part of the sac that surrounds the fetus as it grows. GTD can occur in any kind of pregnancy. GTD is almost always curable, especially if found early.

This type of tumor begins when normal cells of the placenta, called trophoblast cells, change and form a mass. GTD is usually benign, which means noncancerous. Some GTD tumors can be cancerous, meaning they can spread to other parts of the body.

Usually, GTD occurs when there is a problem during the combination of a man’s sperm and a woman’s egg. Trophoblast cells normally grow and surround a fertilized egg in the uterus, helping to connect the fertilized egg to the uterine wall and to form the placenta. The placenta is the organ that develops during pregnancy to provide nutrients from the mother to the fetus. When this type of problem occurs in the placental tissues, a healthy fetus usually does not develop. In rare cases, GTD is a cancerous growth that begins from a normal placenta and may be found after a normal pregnancy and delivery of a baby.

Types of GTD

There are 2 main groupings of GTD. The first group is called Hydatidiform Moles (also known as molar pregnancy), and the second group is called Gestational Trophoblastic Neoplasia (GTN). There are subtypes under each grouping, explained below.

  • Hydatidiform Moles (Molar pregnancy). Molar pregnancies account for about 80% of all GTD. A hydatidiform mole is also called a molar pregnancy. There are 2 types of molar pregnancy: complete or partial. Molar pregnancies are usually slow-growing and benign, although there is a chance a mole can become cancerous. A Complete Hydatidiform Mole (complete molar pregnancy) is much more likely to become cancerous than a Partial Hydatidiform Mole (partial molar pregnancy).

    A complete molar pregnancybegins when sperm fertilizes an abnormal egg that doesn’t contain the mother’s DNA or a nucleus. Instead of forming a fetus, the tissue grows into a mound of cells that look like grape-like cysts.

    A partial molar pregnancy begins with fertilization of a normal egg by 2 sperm, so there are 2 sets of DNA from the father. The result has some of the features of a complete molar pregnancy and part of the fetus may form, but there is no chance for fetal survival.

  • Gestational Trophoblastic Neoplasia (GTN). The second grouping is called GTN. While they can be related to molar pregnancy, GTNs are typically cancerous. The main types of GTNs include:

    • Invasive mole. Although it is a type of molar pregnancy, an invasive mole is considered a GTN because of its potential to grow and spread. An invasive mole may grow into the muscle layer of the woman’s uterus. Fewer than 15% of molar pregnancies spread outside of the uterus.

    • Choriocarcinoma. This is a cancerous tumor formed from trophoblast cells, and it can grow and spread more quickly than other GTNs. Choriocarcinoma can spread to the uterine muscle layer, nearby blood vessels, and outside of the uterus to nearby organs, brain, lung, liver, or kidneys. About 5% of all GTD are choriocarcinomas. It is most often found in women who’ve had a molar pregnancy; a normal pregnancy and delivery of a baby; a tubal pregnancy where the fetus grows in the fallopian tube instead of the uterus; an induced ending of a pregnancy called an abortion; or a spontaneous loss of a pregnancy called a miscarriage.

    • Placental-site trophoblastic tumor (PSTT). This rare type of GTN is also formed from trophoblast cells. It starts where the placenta joins with the uterus. This type of tumor grows slowly, but it can eventually spread to the uterine muscle, nearby blood vessels, and lymph nodes, pelvis, or lungs. Signs and symptoms may not occur until well after a normal pregnancy, an abortion, or treatment for a molar pregnancy.

    • Epithelioid trophoblastic tumor (ETT). This is an extremely rare type of GTD. If it does spread, the most common area is the lungs. It is most often found after a normal pregnancy and can take a long time to show signs and symptoms.

The next section in this guide is Statistics. It helps explain the number of women who are diagnosed with GTD and their survival rates. You may use the menu to choose a different section to continue reading in this guide.  

Gestational Trophoblastic Disease - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2016

ON THIS PAGE: You will find information about the number of women who are diagnosed with GTD each year. You will read information about surviving the disease. Remember, survival rates depend on several factors. Use the menu to see other pages.

Overall, GTD is rare and often curable. In the United States, GTD accounts for less than 1% of all cancers that start in a woman's reproductive system, which is a grouping called gynecologic cancers. GTD occurs in about 1 out of every 1,000 to1,500 pregnancies in the United States. Most of these are molar pregnancies. Choriocarcinoma occurs in about 2 to 7 pregnancies out of every 100,000 pregnancies in the United States. Overall, GTD is more common in other parts of the world, including Asia and Africa.

Nearly all women with a molar pregnancy or low-risk gestational trophoblastic neoplasia (GTN) can be cured, often using fertility-sparing surgery alone. A placental site trophoblastic tumor can often be cured, particularly if it is found before it spreads outside the uterus. Even with faster-growing GTN, cure rates are as high as 80% to 90%, with intensive treatment.

It is important to remember that statistics on how many women survive this type of disease are an estimate. The estimate comes from data based on women with GTD in the United States each year. So, your own risk may be different. Doctors cannot say for sure how long any woman will live with GTD. Learn more about understanding statistics.

Statistics source: American Cancer Society.

The next section in this guide is Medical Illustrations. It offers drawings of body parts often affected by this disease. You may use the menu to choose a different section to continue reading in this guide.

Gestational Trophoblastic Disease - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2016

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this type of tumor. Use the menu to see other pages.

A risk factor is anything that increases a person’s chance of developing disease. Although risk factors often influence the development of a tumor, most do not directly cause it. Some people with several risk factors never develop a tumor, while others with no known risk factors do. However, knowing your risk factors and talking about them with your doctor may help you make more informed lifestyle and health care choices.

The following factors may raise a woman’s risk of developing GTD:

  • Age. Being younger than 20 or older than 35 when becoming pregnant brings a higher risk of GTD. The risk increases when the woman is over age 45 at the time of pregnancy.

  • Previous molar pregnancy. A previous molar pregnancy may increase the risk of developing another GTD.

  • Nutrition/diet. Some studies have linked low levels of carotene and vitamin A in a person’s diet with a higher risk of molar pregnancy.

  • Blood type. Specific blood types – blood type A or AB – may slightly increase the risk of GTD.

  • Family history of molar pregnancy. There have been rare cases of women in the same family having 1 or more molar pregnancies.

The only known way to avoid GTD is to avoid pregnancy. When making such family planning decisions, women should remember that GTD is rare. Women who have had a molar pregnancy in the past, or are worried about GTD for any reason, are encouraged to talk with their doctors about the future risk of GTD.

The next section in this guide is Symptoms and Signs. It explains what body changes or medical problems this disease can cause. You may use the menu to choose a different section to continue reading in this guide.  

Gestational Trophoblastic Disease - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2016

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. Use the menu to see other pages.

Women with GTD may experience the following symptoms or signs. Sometimes, women with GTD do not have any of these changes. Or, the cause of a symptom may be another medical condition that is not cancer.

GTD may not cause any symptoms in its early stage because it may resemble a normal pregnancy. However, the following symptoms could signal a potential problem:

  • Vaginal bleeding, during or after pregnancy

  • A uterus that is larger than expected at a given point in the pregnancy

  • Severe nausea or vomiting during pregnancy

  • High blood pressure at an early point in the pregnancy. This may include headaches and/or swelling of the feet and hands

  • A pregnancy where the baby has not moved at the expected time

  • Pain or pressure in the pelvic area

  • Abdominal swelling

  • Anemia, which is a low red blood cell count that can cause fatigue, dizziness, shortness of breath, or an irregular heartbeat

  • Anxiety or irritability, including feeling shaky or severe sweating

  • Sleep problems

  • Unexplained weight loss

Occasionally, symptoms may appear weeks, months, or even years after a normal pregnancy and birth.

If you are concerned about any changes you experience, please talk with your doctor. Your doctor will ask how long and how often you’ve been experiencing any symptom, in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

If GTD is diagnosed, relieving symptoms remains an important part of your care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your health care team about the symptoms you experience, including any new symptoms or a change in symptoms.

In rare situations, if a cancerous GTD has spread beyond the uterus at the time of diagnosis, other symptoms may occur depending on the location. In this case, GTD may be misdiagnosed as another health problem. For example, spread of choriocarcinoma to the brain may result in bleeding, which can be mistaken for a brain aneurysm. A beta human chorionic gonadotropin (beta hCG) blood test (see Diagnosis) should help the health care team better understand the problem.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. You may use the menu to choose a different section to continue reading in this guide.  

Gestational Trophoblastic Disease - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2016

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. Use the menu to see other pages.

Doctors use many tests to find, or diagnose, cancer. They also do tests to learn if cancer has spread to another part of the body from where it started. If this happens, it is called metastasis. For example, imaging tests can show if the cancer has spread. Imaging tests show pictures of the inside of the body. Doctors may also do tests to learn which treatments could work best.

For most types of cancer, a biopsy is the only sure way for the doctor to know whether an area of the body has cancer. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

This list describes options for diagnosing GTD, and not all tests listed will be used for every person. Your doctor may consider these factors when choosing a diagnostic test:

  • The type of disease suspected

  • Your signs and symptoms

  • Your age and medical condition

  • The results of earlier medical tests

In addition to a physical examination, the following tests may be used to diagnose GTD:

  • Pelvic examination. The doctor may feel the uterus, vagina, ovaries, fallopian tubes, bladder, and rectum to check for lumps or any unusual changes. This is similar to the physical exam done when women have an annual gynecologic check-up.

  • Beta human chorionic gonadotropin (hCG) test. Tumor markers are substances found at higher than normal levels in the blood, urine, or body tissues of people with a tumor. Women who are pregnant normally produce high levels of the hormone beta hCG in their blood and urine. High levels of beta hCG in a woman who is not pregnant could mean that GTD is present. hCG tests are also helpful tests during and after treatment for GTD, to monitor a woman’s recovery.

  • Other lab tests. Additional blood and urine tests may be done, including tests to check the woman’s thyroid, liver, kidney, and bone marrow function.

  • Ultrasound. Also called a sonogram, an ultrasound uses sound waves to create a picture of the internal organs. In a transvaginal ultrasound, an ultrasound wand is inserted into the vagina and aimed at the uterus, to obtain the pictures.

  • X-ray. An x-ray is a way to create a picture of the structures inside of the body using a small amount of radiation. A chest x-ray may be done to see if the tumor spread outside of the uterus.

  • Computed tomography (CT or CAT) scan. A CT scan creates a 3-dimensional picture of the inside of the body using x-rays taken from different angles. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. A CT scan can also be used to measure the tumor’s size. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye is injected into a patient’s vein or given as a drink to swallow.

  • Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. MRI can also be used to measure the tumor’s size. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye can be injected into a patient’s vein or given as a pill to swallow. In GTD, MRIs are most often used to see a patient’s brain.

After diagnostic tests are done, your doctor will review all of the results with you. If the diagnosis is GTD, these results also help the doctor describe the disease in more detail; this is called staging.

The next section in this guide is Stages. It explains the system doctors use to describe the extent of the disease. Or, use the menu to choose another section to continue reading this guide.

Gestational Trophoblastic Disease - Stage and Risk Grouping

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2016

ON THIS PAGE: You will learn how doctors describe the disease’s growth or spread. This is called the stage. Use the menu to see other pages.

Staging is a way of describing where the tumor is located, if it is cancerous, if or where it has spread, and whether it is affecting other parts of the body. Doctors use diagnostic tests to find out the tumor’s stage, so staging may not be complete until all the tests are finished. Knowing the stage helps the doctor to decide what kind of treatment is best and can help predict a patient's prognosis, which is the chance of recovery. There are different stage descriptions for different types of tumors. For GTD, here is the staging system developed by the Federation Internationale de Gynecologie et d'Obstetrique, or FIGO.

FIGO Anatomic Staging

  • Stage I: Disease confined to the uterus

  • Stage II: GTD extends outside the uterus, but is limited to the genital structures

  • Stage III: GTD extends to the lungs, with or without known genital tract involvement

  • Stage IV: All other metastatic sites

World Health Organization (WHO) Risk Score as Adapted by FIGO

The table below shows how the risk score staging factor is determined. Low risk is a score of 6 or less, and high risk is a score of 7 or more. Women with a low-risk tumor means the prognosis is good, even if cancer has spread, because treatment is usually very effective. Women with a high-risk tumor may require more intense treatment even if the tumor has not spread.

Risk Score

Prognostic Factor

0

1

2

4

Age

Younger than 40

40 and/or older

-

-

Previous pregnancy

Hydatidiform mole

Abortion

Full-term pregnancy

-

Months since last pregnancy

Less than 4

4 to 6

7 to 12

More than 12

Pretreatment hCG (IU/ml)

Less than 10³

Greater than or equal to 10³ to 104

>104 to 105

Greater than or equal to 105

Largest tumor size, including uterus

Less than 3 cm

3 to <5 cm

Greater than or equal to 5 cm

-

Site of spread

Lung

Spleen or kidney

Gastrointestinal tract

Brain, liver

Number of tumors that have spread*

Zero

1 to 4

5 to 8

More than 8

The number of drugs used to treat the tumor that have not worked

None

None

Single drug

Two or more drugs

*For lung metastases, chest x-ray (not CT scan) is used to count the number of metastases

To stage and determine a risk factor score, a patient’s diagnosis is assigned to a stage as represented by a Roman numeral I, II, III and IV (1, 2, 3, and 4). This is separated by a colon from the sum of all the actual risk factor scores expressed in Arabic numerals, such as Stage II:4 or Stage IV:9. This stage and score will be given for each patient. 

For people with PSTT/ETT, only the stage will be given. Risk factor score is not applicable.

Recurrent: Recurrent GTD is a tumor that has come back after treatment. If the cancer does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.

Information about the GTD stage will help the doctor recommend a specific treatment plan. The next section in this guide is Treatment Options. You may use the menu to choose a different section to continue reading in this guide.

Gestational Trophoblastic Disease - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2016

ON THIS PAGE: You will learn about the different treatments doctors use for women with this type of cancer. Use the menu to see other pages.

This section tells you the treatments that are the standard of care for this type of cancer. “Standard of care” means the best treatments known. When making treatment plan decisions, patients are encouraged to consider clinical trials as an option. A clinical trial is a research study that tests a new approach to treatment. Doctors want to learn whether the new treatment is safe, effective, and possibly better than the standard treatment. Clinical trials can test a new drug, a new combination of standard treatments, or new doses of standard drugs or other treatments. Your doctor can help you consider all your treatment options. To learn more about clinical trials, see the About Clinical Trials and Latest Research sections.

Treatment overview

For GTD, different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team. For GTD, this often includes the woman’s gynecologist, who is a doctor that treats problems within a woman’s reproductive system, and a gynecologic oncologist, who specializes in treating cancer of the female reproductive system. Other specialists may include a medical oncologist, surgeon, and radiation oncologist, described below. Cancer care teams include a variety of other health care professionals, such as physician assistants, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.

GTD is typically curable, especially when found early. Descriptions of the most common treatment options for GTD are listed below. Surgery and/or chemotherapy may be used to treat a woman with GTD. Treatment options and recommendations depend on several factors, including the type, stage, and risk grouping of GTD, the patient’s preferences and overall health.

Your care plan may include treatment for symptoms and side effects, an important part of medical care. Women diagnosed with GTD may have concerns about the effect of treatment on their fertility (ability to become pregnant in the future) and sexual health, and patients are encouraged to talk about these concerns with their health care team before treatment begins. Take time to learn about all of your treatment options and be sure to ask questions about things that are unclear. Also, talk with your doctor about the goals of each treatment and what you can expect while receiving the treatment. Learn more about making treatment decisions.

Surgery

Surgery is the removal of the tumor and some surrounding healthy tissue during an operation. It is often the first treatment used for a molar pregnancy and may be the only treatment necessary. A surgical oncologist is a doctor who specializes in treating cancer using surgery.

For GTD, the extent of surgery depends on the stage of the tumor. Common surgical options are described below:

  • Suction dilation and curettage (D&C). A D&C is when the doctor removes the tissues inside the uterus using a small vacuum-like device. After that, the walls of the uterus are scraped to remove any remaining molar tissue. The patient may receive a drug called oxytocin that helps the uterus contract to normal size. A D&C is used for a molar pregnancy and allows for preservation of a woman’s fertility. Side effects may include some vaginal bleeding, infection, scarring, cramping, and blood clots. Talk with your health care team about what to expect from this procedure.

  • Hysterectomy. A hysterectomy is the removal of the woman’s uterus and uterine cervix. In most cases of GTD, a hysterectomy is not necessary because the women are cured with D&C, followed by chemotherapy when needed. A hysterectomy is usually recommended to reduce the risk of recurrence or to treat a tumor type of PSTT and ETT. A hysterectomy can be either a simple hysterectomy, which is the removal of the uterus and its cervix, or a radical hysterectomy, which is the removal of the uterus, its cervix, upper vagina, and the tissue around the cervix. In some cases, a supracervical hysterectomy can be performed, which removes the body of the uterus while preserving the uterine cervix. There are different techniques used to perform a hysterectomy, including a traditional incision in the stomach or a technique that uses several, smaller incisions called a laparoscopic hysterectomy. Side effects may include pain, bleeding, and infection. Talk with your doctor and other members of your health care team about possible side effects and how they can be relieved. Women who have a hysterectomy cannot become pregnant in the future (infertility.)

Following GTD surgery, the woman’s beta hCG level (see Diagnosis) will be monitored with blood tests to make sure that it returns to normal levels. If the beta hCG level remains high or increases after an initial drop, it may mean that tumor cells are still present, either in a portion of the original tumor -- called a persistent or invasive mole -- and/or the GTD has spread to another area. If this occurs, additional treatment such as chemotherapy will be recommended. If the GTD surgery shows the presence of choriocarcinoma, chemotherapy (described below) is started immediately.  Choriocarcinoma is cancerous and always needs chemotherapy. 

Learn more about the basics of cancer surgery.

Chemotherapy

Chemotherapy is the use of drugs to destroy tumor cells, usually by stopping those cells’ ability to grow and divide. Chemotherapy is given by a gynecologic oncologist or medical oncologist, a doctor who specializes in treating a tumor with medication. Chemotherapy is usually very effective in treating a molar pregnancy and some types of GTN, but it is not as effective with PSTT and ETT. Sometimes, chemotherapy is used as a single treatment, and in other cases, it may be combined with surgery.

Systemic chemotherapy gets into the bloodstream to reach tumor cells throughout the body. Common ways to give chemotherapy include an intramuscular (IM) injection (or shot), intravenous (IV) tube placed into a vein using a needle, or in a pill or capsule that is swallowed (orally).

A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive 1 drug at a time or combinations of different drugs given at the same time. Common drugs used in chemotherapy for GTD include:

  • methotrexate (multiple brand names)

  • dactinomycin (Actinomycin-D, Cosmegen)

  • etoposide (VePesid, VP-16, Toposar)

  • cyclophosphamide (Cytoxan, Neosar)

  • vincristine (Oncovin, Vincasar)

  • cisplatin (Platinol, CDDP)

Similar to surgery, the type of chemotherapy depends on the stage grouping of GTD, including whether the tumor is low risk or high risk. A low-risk invasive mole or a cancerous GTD that has spread often can be treated successfully with methotrexate either alone or in combination with leucovorin (folinic acid, Wellcovorin). Another drug that can be used is dactinomycin, especially if the patient’s liver is not fully healthy. Approximately 15% of women with low-risk disease will need additional treatment with a second drug.

Women with high-risk, metastatic disease generally receive more than 1 drug, called combination chemotherapy. Common combinations include:

  • EMA-CO: etoposide, methotrexate, dactinomycin, cyclophosphamide, and vincristine

  • EMA-EP: etoposide, methotrexate, dactinomycin, etoposide, and cisplatin

Treatment results are measured by testing the woman’s beta hCG levels. Usually chemotherapy is continued until beta hCG levels are normal, and for additional cycles of treatment. In most instances, patients require 3 to 4 cycles of this treatment.

The side effects of chemotherapy depend on the individual and the dose used, but they can include fatigue, risk of infection, nausea and vomiting, mouth sores, hair loss, loss of appetite, neuropathy (numbness and tingling in the fingers and toes) and oto-toxicity, which is loss of high-frequency hearing and/or ringing in the ears. These side effects usually go away after treatment is finished. Talk with your doctor beforehand about the possible side effects from the specific drug(s) given and how side effects may be relieved or reduced.

Learn more about the basics of chemotherapy and preparing for treatment. The medications used to treat GTD are continually being evaluated. Talking with your doctor is often the best way to learn about the medications prescribed for you, their purpose, and their potential side effects or interactions with other medications. Learn more about your prescriptions by using searchable drug databases.

Getting care for symptoms and side effects

GTD and its treatment often cause side effects. In addition to treatments intended to slow, stop, or eliminate the tumor, an important part of medical care is relieving a person’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting the patient with her physical, emotional, and social needs.

Palliative care is any treatment that focuses on reducing symptoms, improving quality of life, and supporting patients and their families. Any person, regardless of age or type and stage of cancer, may receive palliative care. It works best when palliative care is started as early as needed in the cancer treatment process. People often receive treatment for the tumor at the same time they receive treatment to ease side effects. Patients who receive both at the same time often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional support, and other therapies. You may receive palliative treatments similar to those meant to eliminate the tumor, such as chemotherapy or surgery. Talk with your doctor about the goals of each treatment in your treatment plan.

Before treatment begins, talk with your health care team about the possible side effects of your specific treatment plan and palliative care options. And during and after treatment, be sure to tell your doctor or another health care team member if you are experiencing a problem so it can be addressed as quickly as possible. Learn more about palliative care.  

Remission and the chance of recurrence

A remission is when the tumor cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.

A remission may be temporary or permanent. This uncertainty causes many people to worry that the cancer will come back. While many remissions of GTD are permanent, it is important to talk with your doctor about the possibility of the tumor returning. The risk of recurrence for GTD overall is low, but it may be 10% to 15% for women with a high-risk tumor. Understanding your risk of recurrence and the treatment options may help you feel more prepared if the tumor does return. Learn more about coping with the fear of recurrence

If GTD does return after the original treatment, it is called recurrent. It may come back in the uterus (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence).

When this occurs, a new cycle of testing will begin to learn as much as possible about the recurrence. After this testing is done, you and your doctor will talk about your treatment options. Often the treatment plan will include the treatment described above such as surgery or chemotherapy but they may be used in a different combination or given at a different pace. Your doctor may also suggest clinical trials that are studying new ways to treat this type of recurrent tumor. Treatment is often effective for a recurrent GTD. Whichever treatment plan you choose, palliative care will be important for relieving symptoms and side effects.

People with recurrent GTD often experience emotions such as disbelief or fear. Patients are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with cancer recurrence.

If treatment fails

GTD is most often curable. However, recovery is not always possible. If a cancerous GTD cannot be cured or controlled, the disease may be called advanced or terminal.

This diagnosis is stressful, and for many people advanced cancer is difficult to discuss. However, it is important to have open and honest conversations with your doctor and health care team to express your feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families. Making sure a person is physically comfortable and free from pain is extremely important.

Patients who have advanced disease and who are expected to live less than 6 months may want to consider a type of palliative care called hospice care. Hospice care is designed to provide the best possible quality of life for people who are near the end of life. You and your family are encouraged to think about where you would be most comfortable: at home, in the hospital, or in a hospice environment. Nursing care and special equipment can make staying at home a workable alternative for many families. Learn more about advanced cancer care planning.

After the death of a loved one, many people need support to help them cope with the loss. Learn more about grief and loss.

The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for women with GTD. You may use the menu to choose a different section to continue reading in this guide. 

Gestational Trophoblastic Disease - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2016

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. Use the menu to see other pages.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for patients with GTD. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. In fact, every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.

Many clinical trials focus on new treatments. Researchers want to learn if a new treatment is safe, effective, and possibly better than the treatment doctors use now. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. Patients who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there is no guarantee that the new treatment will be safe, effective, or better than what doctors already use.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your doctor about clinical trials for symptoms and side effects. There are also clinical trials studying ways to prevent cancer.

Deciding to join a clinical trial

Patients decide to participate in clinical trials for many reasons. For some patients, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other patients volunteer for clinical trials because they know that these studies are a way to make progress in treating GTD. Even if they do not benefit directly from the clinical trial, their participation may benefit future patients with GTD.

Sometimes people have concerns that, in a clinical trial, they may receive no treatment by being given a placebo or a “sugar pill.” However, placebos are usually combined with standard treatment in most cancer clinical trials. When a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, patients must participate in a process known as informed consent. During informed consent, the doctor should list all of the patient’s options so that the person understands how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different than the risks of standard treatment. Finally, the doctor must explain what will be required of each patient in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. These may include that the new treatment is not working or there are serious side effects. Clinical trials are closely monitored by experts who watch for any problems with the study. It is important that patients participating in a clinical trial talk with their doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends. 

Finding a clinical trial

Research through clinical trials is ongoing for all types of tumor. For specific topics being studied for GTD, learn more in the Latest Research section.

Cancer.Net offers a lot of information about clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of tumor.

In addition, this website offers free access to a video-based educational program about cancer clinical trials, located outside of this guide.

The next section in this guide is Latest Research. It explains areas of scientific research currently going on for this type of tumor. You may use the menu to choose a different section to continue reading in this guide.

Gestational Trophoblastic Disease - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2016

ON THIS PAGE: You will read about the scientific research being done now to learn more about this type of cancer and how to treat it. Use the menu to see other pages.

Doctors are working to learn more about gynecologic tumors (tumors in the female reproductive system), ways to prevent them, how to best treat them, and how to provide the best care to women diagnosed with this disease. The following areas of research may include new options for patients through clinical trials. Because GTD is uncommon, GTD-only clinical trials may be hard to find. However, there are several clinical trials that are open to people with different types of cancer, particularly other gynecologic tumors, that include GTD. Always talk with your doctor about the best diagnostic and treatment options for you.

  • New drug therapies. Researchers are studying new drugs for the treatment of GTD and other gynecologic tumors.

  • New treatment combinations. Doctors continue to evaluate different combinations of current treatment options and different drugs, as well as integrating new approaches that are being studied in clinical trials.

  • Causes of GTD. Researchers are working to learn more about what causes GTD, including possible chromosome changes or problems.

  • Earlier diagnosis. There is research being done to produce more sensitive blood tests to find hCG levels at smaller amounts, which could lead to some women being diagnosed with GTD at an earlier stage.

  • Palliative care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current treatments for GTD to improve patients’ comfort and quality of life.

To find clinical trials specific to your diagnosis, talk with your doctor or search online clinical trial databases now.

The next section in this guide is Coping with Treatment. It offers guidance in how to cope with the physical, emotional, and social changes that GTD and its treatment can bring. You may use the menu to choose a different section to continue reading in this guide.  

Gestational Trophoblastic Disease - Coping with Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2016

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of GTD and its treatment. This page includes several links outside of this guide to other sections of this website. Use the menu to see other pages.

Every treatment can cause side effects or changes to your body and how you feel. For many reasons, people don’t experience the same side effects even when they are given the same treatment for the same type of tumor. This can make it hard to predict how you will feel during treatment.

As you prepare to start treatment, it is normal to fear treatment-related side effects. It may help to know that your health care team will work to prevent and relieve side effects. Doctors call this part of treatment “palliative care.” It is an important part of your treatment plan, regardless of your age or the stage of disease.

Coping with physical side effects

Common physical side effects from each treatment option for GTD are described within the Treatment Options section. Learn more about side effects of GTD and its treatment, along with ways to prevent or control them. Changes to your physical health depend on several factors, including the tumor’s stage, the length and dose of treatment, and your general health.

Sometimes, physical side effects can last after treatment ends. Doctors call these long-term side effects. They call side effects that occur months or years after treatment late effects. Treating long-term side effects and late effects is an important part of survivorship care. Learn more by reading the Follow-up Care section of this guide or talking with your doctor.

Coping with emotional and social effects

You can have emotional and social effects as well as physical effects after a diagnosis of GTD. This may include dealing with difficult emotions, such as anxiety or anger, or managing your stress level. Sometimes, patients have problems expressing how they feel to their loved ones, or people don’t know what to say in response.

Patients and their families are encouraged to share their feelings with a member of their health care team. You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your needs.

Coping with financial effects

Treatment for GTD can be expensive. It is often a big source of stress and anxiety for women with GTD and their families. In addition to treatment costs, many people find they have extra, unplanned expenses related to their care. For some people, the high cost stops them from following or completing their treatment plan. This can put their health at risk and may lead to higher costs in the future. Learn more about managing financial considerations, in a separate part of this website.

Caring for a loved one with cancer

Family members and friends often play an important role in taking care of a woman with GTD. This is called being a caregiver. Caregivers can provide physical, practical, and emotional support to the patient, even if they live far away.

Caregivers may have a range of responsibilities on a daily or as-needed basis. Below are some of the responsibilities caregivers take care of:

  • Providing support and encouragement

  • Giving medications

  • Helping manage symptoms and side effects

  • Coordinating medical appointments

  • Providing a ride to appointments

  • Assisting with meals

  • Helping with household chores

  • Handling insurance and billing issues

Learn more about caregiving.

Talking with your health care team about side effects

Before starting treatment, talk with your doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they are likely to happen?

  • What can we do to prevent or relieve them?

Be sure to tell your health care team about any side effects that happen during treatment and afterward. Tell them even if you don’t think the side effects are serious. This discussion should include physical, emotional, and social effects of a tumor.

Also, ask how much care you may need at home and with daily tasks during and after treatment. This can help you make a caregiving plan

The next section in this guide is Follow-up Care. It explains the importance of check-ups after you finish treatment for GTD. You may use the menu to choose a different section to continue reading in this guide.  

Gestational Trophoblastic Disease - Follow-up Care

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2016

ON THIS PAGE: You will read about your medical care after treatment for GTD is completed, and why this follow-up care is important. Use the menu to see other pages.

Care for people diagnosed with GTD doesn’t end when active treatment has finished. Your health care team will continue to check to make sure the tumor has not returned, manage any side effects, and monitor your overall health. This is called follow-up care.

Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead. Follow-up treatment always includes the doctor measuring the blood’s beta hCG levels, typically every 1 to 2 weeks until the hormone level is normal for 3 consecutive tests. After that, beta hCG levels should be monitored monthly for the first year, every 4 months for the second year, then yearly for the third and fourth years.

Women are encouraged to talk with their doctors about the recommended amount of time to wait before becoming pregnant after reaching normal levels of beta hCG. If the woman had either a complete or partial Hydatidiform Mole, and no chemotherapy was given, pregnancy may be safe after 3 to 6 months. Women with a history of GTD should have a beta hCG check after each pregnancy, even if the pregnancy was completely normal.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will also ask specific questions about your health. Some people may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors including the type and stage of GTD originally diagnosed and the types of treatment given.

Managing long-term and late side effects

Most people expect to experience side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. In addition, other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.

Talk with your doctor about your risk of developing such side effects based on the type of tunor, your individual treatment plan, and your overall health. If chemotherapy was given, talk with your doctor about possible long-term side effects based on the specific drug(s) used. Different drugs and doses can cause different side effects. If you had a treatment known to cause specific late effects, you may also have certain physical examinations, scans, or blood tests to help find and manage them.

Keeping personal health records

You and your doctor should work together to develop a personalized follow-up care plan. Be sure to ask about any concerns you have about your future physical or emotional health. ASCO offers forms to help create a treatment summary to keep track of the GTD treatment you received and develop a survivorship care plan when treatment is completed.

This is also a good time to decide who will lead your follow-up care. Some survivors continue to see their gynecologic oncologist, while others transition back to the general care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of tumor, side effects, health insurance rules, and your personal preferences. 

If a doctor who was not directly involved in your GTD care will lead your follow-up care, be sure to share your treatment summary and survivorship care plan forms with him or her, and with all future health care providers. Details about your treatment are very valuable to the health care professionals who will care for you throughout your lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a diagnosis of GTD. You may use the menu to choose a different section to continue reading in this guide.

Gestational Trophoblastic Disease - Survivorship

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2016

ON THIS PAGE: You will read about how to with challenges in everyday life after a diagnosis of GTD. Use the menu to see other pages.

What is survivorship?

The word “survivorship” means different things to different people. Common definitions include:

  • Having no signs of disease after finishing treatment.

  • Living with, through, and beyond the diagnosis. According to this definition, cancer survivorship begins at diagnosis and includes people who continue to have treatment over the long term, to either reduce the risk of recurrence or to manage chronic disease.

Survivorship is one of the most complicated parts of having a tumor diagnosed. This is because it is different for everyone.

Survivors may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a diagnosis and have gained a greater acceptance of themselves. Others become very anxious about their health and uncertain of how to cope with everyday life.

Survivors may feel some stress when their frequent visits to the health care team end after completing treatment. Often, relationships built with the medical care team provide a sense of security during treatment, and people miss this source of support. This may be especially true when new worries and challenges surface over time, such as any late effects of treatment, emotional challenges including fear of recurrence, sexuality and fertility concerns, and financial and workplace issues.

Every survivor has individual concerns and challenges. With any challenge, a good first step is being able to recognize your fears and talk about them. Effective coping requires:

  • Understanding the challenge you are facing,

  • Thinking through solutions,

  • Asking for and allowing the support of others, and

  • Feeling comfortable with the course of action you choose.

Many survivors find it helpful to join an in-person support group or an online community of survivors. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of your health care team, individual counseling, or asking for assistance at the learning resource center of the center where you received treatment.

Changing role of caregivers

Family members and friends may also go through periods of transition. A caregiver plays a very important role in supporting a person diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to the cancer diagnosis will become much less or come to an end. Caregivers can learn more about adjusting to life after caregiving in this article.

A new perspective on your health

For many people, survivorship serves as a strong motivator to make positive lifestyle changes.

People recovering from GTD are encouraged to follow established guidelines for good health, such as not smoking, limiting alcohol, eating well, and managing stress. Regular physical activity can help rebuild your strength and energy level. Your health care team can help you create an appropriate exercise plan based upon your needs, physical abilities, and fitness level. Learn more about making healthy lifestyle choices.

In addition, it is important to have recommended medical check-ups and tests (see Follow-up Care) to take care of your health. Rehabilitation may also be recommended, and this could mean any of a wide range of services such as physical therapy, career counseling, pain management, nutritional planning, and/or emotional counseling. The goal of rehabilitation is to help people regain control over many aspects of their lives and remain as independent and productive as possible.

Talk with your doctor to develop a survivorship care plan that is best for your needs.

Looking for More Survivorship Resources?

For more information about survivorship, explore these related items. Please note these links will take you to other sections of Cancer.Net:

  • ASCO Answers Cancer Survivorship Guide: Get this 44-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The booklet is available as a PDF, so it is easy to print out.
  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert that provides information about what comes next after finishing treatment.
  • Survivorship Resources: Cancer.Net offers an entire area of this website with resources to help survivors, including for survivors in different age groups.

The next section offers Questions to Ask the Doctor to help start conversations with your cancer care team. You may use the menu to choose a different section to continue reading in this guide.  

Gestational Trophoblastic Disease - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2016

ON THIS PAGE: You will find some questions to ask your doctor or other members of your health care team, to help you better understand your diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with the doctor is important to make informed decisions about your health care. These suggested questions are a starting point to help you learn more about your medical care and treatment. You are also encouraged to ask additional questions that are important to you. You may want to print this list and bring it to your next appointment, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your care.

Questions to ask after getting a diagnosis

  • What type of GTD do I have?

  • Can you explain my pathology report (laboratory test results) to me?

  • What is the stage of the tumor? What does this mean?

  • Is it low risk or high risk? What does this mean?

Questions to ask about choosing a treatment and managing side effects

  • What are my treatment options?

  • What clinical trials are available for me? Where are they located, and how do I find out more about them?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the tumor, help me feel better, or both?

  • Who will be part of my health care team, and what does each member do?

  • Who will be leading my overall treatment?

  • If I need surgery, what type of surgery do you recommend? Will I need to stay in the hospital? What will recovery be like?

  • If I need chemotherapy, which drug(s) will be given?

  • What are the possible side effects of each treatment, both in the short term and the long term?

  • Will I be able to become pregnant after treatment? Should I talk with a fertility specialist before GTD treatment begins?

  • Do you recommend I wait following treatment to try to become pregnant? If so, how long? Is it OK to use birth control pills or other methods during this time?

  • Could this treatment affect my sex life? If so, how and for how long?

  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

  • If I’m worried about managing the costs of medical care, who can help me?

Questions to ask about planning follow-up care

  • What is the chance that the tumor will come back? Should I watch for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the treatment I received?

  • What follow-up tests will I need, and how often will I need them?

  • How do I get a treatment summary and survivorship care plan to keep in my personal records?

  • Who will be leading my follow-up care?

  • What survivorship support services are available to me? To my family?

  • If I become pregnant in the future, are there specific tests or exams that I need? How often?

  • What support services are available to me? To my family?

  • Whom should I call for questions or problems?

The next section in this guide is Additional Resources.  It offers more website resources beyond this guide that may be helpful to you. You may use the menu to choose a different section to continue reading in this guide.  

Gestational Trophoblastic Disease - Additional Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2016

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Gestational Trophoblastic Disease. Use the menu to go back and review other pages.

Cancer.Net includes many other sections about the medical and emotional aspects of being diagnosed with a tumor, both for the person diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Beyond this guide, here are a few links to help you explore other parts of Cancer.Net:

This is the end of Cancer.Net’s Guide to Gestational Trophoblastic Disease. Use the menu to select another section, to continue reading this guide.