Uterine/Endometrial Cancer/GTD
Cancer of the uterus arises from either the smooth muscle component or the epithelial component known as the endometrium. Endometrial cancer is the most common gynecologic cancer and its incidence is rising. Cancer of the smooth muscle component of the uterus, known as uterine sarcoma, is very rare. On this page you will learn about symptoms of uterine cancer, diagnosis, treatment options, and hopefully help you prepare for a discussion with a Gynecologic Oncologist.
View the information in this section in our brochure, Endometrial Cancer: Your Guide available at the links below.
- Endometrial Cancer: Your Guide Download | Order Brochures
- Cáncer de Útero: Su Guía (Español) Download | Order Brochures
- Endometrial Cancer: Your Guide (Chinese) Download | Order Brochures
Uterine/Endometrial Cancer Overview
Cancer occurs when cells in an area of the body grow abnormally. Endometrial cancer is cancer of the lining of the uterus (called the endometrium). The uterus (or womb) is where a baby grows during pregnancy. The fallopian tubes and ovaries are on both sides of the uterus. The cervix is the mouth of the uterus (or womb) that connects it to the vagina. These reproductive organs are located in the pelvis, close to the bladder and rectum.
The endometrium is the inside lining of the uterus that grows each month during the childbearing years. It does this so that it will be ready to support an embryo if a person becomes pregnant. If pregnancy does not occur, the endometrium is shed during the menstrual period. Surrounding the endometrium is a thick layer of smooth muscle, which contracts during labor to deliver the baby. Cancer can occur in either the endometrium or the smooth muscle.
Uterine/Endometrial Cancer Symptoms
The most common warning sign for any uterine cancer is abnormal vaginal bleeding. Recognition of this symptom often affords an opportunity for early diagnosis and treatment. In postmenopausal people, any bleeding or spotting is abnormal and should prompt immediate evaluation by a gynecologist. Premenopausal reproductive age people who do not have regular monthly periods or who have excessive duration and/or quantity of bleeding each month should also be evaluated by a gynecologist as these can be symptoms of uterine cancer. Increasing pelvic pressure or abdominal girth, pelvic pain/fullness, increasing urinary frequency, or difficulty passing stool can sometimes be associated with an enlarging uterus. An enlarging uterus outside of pregnancy is often due to smooth muscle tumors and should be prompt evaluation by a gynecologist. Most smooth muscle tumors of the uterus are benign fibroids, but rarely these can be a malignant sarcoma.
Medical Evaluation and Diagnosis
When a person experiences concerning symptoms, a pelvic exam, including a rectovaginal exam, and a general physical should be performed. When the physical exam is abnormal and in most cases of abnormal bleeding or postmenopausal bleeding a pelvic ultrasound and/or endometrial biopsy will be obtained. Biopsy of the endometrium can be done in the office or by way of a D&C (dilation and curettage) procedure in the operating room.
If uterine cancer is suspected or diagnosed, it is important to seek care first from a gynecologic oncologist—medical doctors with specialized training in treating gynecologic cancers who can manage your care from diagnosis to completion of treatment. Use our Seek a Specialist tool to find a gynecologic oncologist in your area.
During your treatment, you will come in contact with many health care professionals—these people make up your treatment team. They will work with each other and you to provide the special care you need. Learn more about your treatment team.
Surgical Staging
Though the majority of uterine cancers are confined to the uterus, your treatment team may recommend more tests to determine if the cancer has spread. Additionally, specific procedures during surgery may be performed to determine the extent of disease. This process is called staging. Staging helps to determine the exact extent of your cancer and the best treatment plan for you.
Following surgery, your cancer will be categorized into Stage I, II, III, or IV. The cancer might also be assigned a grade. Grade refers to how abnormal the cells appear under a microscope. Low grade tumors, also called grade 1, have features that resemble normal endometrium cells. In contrast, in high grade tumors (grade 3) the microscopic appearance is greatly altered from normal. Some varieties of endometrial cancer are not graded because they are high grade by nature and known to behave aggressively in general. Most sarcomas are also considered high grade.
Uterine Cancer Stages
Stage 1:
The cancer is found only in the uterus. It has not spread to the cervix (opening of the uterus).
Stage 2:
The cancer has spread from the uterus to the cervix (opening of the uterus), but it has not gone any farther.
Stage 3:
The cancer has spread outside the uterus itself. It may have spread to nearby lymph nodes, ovaries, fallopian tubes, and vagina, but it has not gone outside the pelvic area. It has not spread to the bladder or rectum.
Stage 4:
The cancer has spread into the bladder or rectum and/or to other body parts outside the pelvis, such as the abdomen or lungs.
Uterine/Endometrial cancer treatment and side effects
Uterine cancer may be treated with surgery, radiation therapy, chemotherapy, or hormonal therapy. Depending on your situation, your treatment team may recommend using a combination of therapies to treat your cancer.
All treatments for uterine cancer have side effects, but most side effects can be managed or avoided. Treatment may affect various aspects of your life, including your function at work, home, intimate relationship, and deeply personal thoughts and feelings..
Before beginning treatment, it is important to learn about the possible side effects and talk with your treatment team members about your feelings or concerns. They can prepare you for what to expect and tell you which side effects should be reported to them immediately. They can also help you find ways to manage the side effects that you experience.
Understanding the Goals of Treatment
As you begin your treatment, make sure that you understand what to expect. Is this for cure? What are the chances of cure? If there is no cure, will the treatment make me live better or longer? It is very important to understand the truth about what to expect from the treatment—and what are the potential costs of side effects, expenses, etc.—so that you can make the best decisions for yourself and the life you want to lead.
Uterine Cancer Treatment Options
Uterine/Endometrial Cancer and Genetics
Most uterine cancers are sporadic with no inherited genetic risk. 5-10% of endometrial cancers can be the result of an inherited mutation in either MLH1, MLH2, MSH6, or PMS2 genes which are diagnostic of Lynch Syndrome. People with Lynch Syndrome have increased risks of multple types of cancers including endometrial and ovarian. If you are diagnosed with endometrial cancer, be sure to ask your doctor if they tested for Lynch Syndrome. A very small subset of patients with serous endometrial cancer could have an inherited underlying BRCA1 mutation as the cause of their disease, however no clear guidelines for genetic testing for BRCA1 mutations exist. Uterine sarcomas are almost never associated with an inherited genetic mutation.
Follow up after treatment
The frequency of exams, imaging, and blood tests varies because of many factors. Typically, you will be followed every 3 to 6 months for the first 2 years with at least an examination of the vagina and rectum to detect any recurrences early at the most curable stage. These examinations will occur less frequently thereafter. In addition, imaging studies such as x-rays, CT scans, or MRIs may be periodically performed, especially if you have any new pains or symptoms. The top of the vagina is the most common site of recurrent endometrial cancer, and patients will typically present with vaginal bleeding.
Recurrent disease
If your cancer recurs, there are several options for treatment. These include repeat surgery, re-treatment with the same chemotherapy given initially, treatment with a different type of agent (chemotherapy, hormonal, or targeted therapy) and sometimes radiation therapy. As each recurrence will be different, it is important to discuss your individual situation with your team. It is also important to investigate whether there is a clinical trial that is appropriate for you. Don’t be afraid to seek a second opinion.
Isolated vaginal recurrences can often be cured so early detection and recognition of abnormal symptoms is critical. Notify your physician if you develop abnormal bleeding or other unusual pelvic symptoms following treatment for endometrial cancer.
Survivorship
After your treatment is completed and your doctor determines that you are in remission, you will be monitored closely. Your doctor will see you for an examination every three months for the first two years, then every six months for the next three years. You will typically have a Pap smear and pelvic examination during your monitoring visits. Radiologic studies may be obtained based on the development of any symptoms or for routine screening.
Take a moment to explore what survivorship could look like after a gynecologic cancer diagnosis. The Society of Gynecologic Oncology (SGO) and Foundation for Women’s Cancer (FWC) Survivorship Toolkit provides convenient resources to help you organize information about your diagnosis, treatment and long-term follow-up. This resource discusses staying well, treatment related side effects, sexuality and intimacy, postoperative pain management and more. It is important to take care of your body and mind during and after treatment. Exercise, nutrition, and maintaining a healthy weight are important for overall health. It is also important to stay connected with your primary care provider for preventive health care and discuss any concerns you may have with your healthcare team.
Importance of Participation in Clinical Trials
There are many ongoing clinical trials studying new and better ways to treat endometrial cancer. Many treatment options are available today because women diagnosed with endometrial cancer were willing to participate in prior clinical trials.
Clinical trials are designed to test some of the newest and most promising treatments for endometrial cancer. The Foundation for Women’s Cancer (FWC) partners with NRG Oncology (formerly Gynecologic Oncology Group), part of the National Cancer Institute cooperative group working only on gynecologic cancer clinical trials, and others to make information about current clinical trials available. For more information about clinical trials available for enrollment, visit ClinicalTrials.gov.
Gestational trophoblastic disease (GTD)
Gestational trophoblastic disease (GTD) is a term used for a group of pregnancy-related tumors. According to the American Cancer Society, GTD occurs in about 1 pregnancy out of 1,000 in the US—most of these are hydatidiform moles. If you and your family have learned of a GTD diagnosis, the amount of information you receive at the time of diagnosis can feel overwhelming. We hope this information will help you understand the condition more thoroughly and help you through this difficult time.
GTD Overview
GTD is a rare group of interrelated tumors that develop following conception that lead to abnormal development of the placenta. More than 80 percent of GTD cases are non-cancerous. All forms of GTD can be treated and in the great majority of cases the treatment results in a cure. Most women who have had a single incidence of GTD can go on to have normal pregnancies.
Medical Evaluation and Diagnosis
The diagnosis of hydatidiform mole is most commonly made by an ultrasound, a test which uses sound waves to show the contents of the uterus. The ultrasound picture of a complete hydatidiform mole will show the uterus filled with cysts. There is no evidence of a fetus.
The early diagnosis of a partial hydatidiform mole will look like a miscarriage or show an abnormal fetus with an abnormal placenta depending upon the number of weeks pregnant. In most cases of partial mole, the diagnosis is made by the pathologist. A blood test will also be done to look for a hormone called human chorionic gonadotropin (known as hCG or beta-hCG) which is also present in normal pregnancy. This hormone is an important test which will be used to determine whether the molar pregnancy will become malignant, to determine if treatment is working, and to find out if the GTD has returned.
The diagnosis of choriocarcinoma is usually made when the patient develops abnormal vaginal bleeding or other symptoms, or on rare occasions when a pregnancy test is found to be elevated and there is no pregnancy.
Malignant GTD stages
Stage 1:
The cancer has not spread from the uterus.
Stage 2:
The cancer has spread from the uterus to other structures in the pelvis.
Stage 3:
The cancer has spread to the lungs.
Stage 4:
The cancer has spread to other organs.
GTD treatment and side effects
After the diagnosis of complete or partial hydatidiform mole is made or suspected, the uterine contents are removed by dilation and evacuation (D&E). Hysterectomy may be advisable in older patients who have completed childbearing to reduce the risk of malignancy. After the uterus is emptied, testing for human chorionic gonadotropin should be performed every week in order to determine if the molar pregnancy is malignant. If the molar pregnancy is benign the hormone level will become undetectable in 8-12 weeks. Hormone testing should be continued until three weekly negative levels are obtained, then followed by monthly tests for six months, after which pregnancy is permitted. During the six month follow-up it is important to avoid pregnancy. The use of oral contraceptives is safe.
A rise in the hormone level indicates that the molar pregnancy is malignant GTD (also called gestational trophoblastic neoplasia, GTN). More tests will be done to find out if the cancer has spread from the uterus to other parts of the body—this is called staging. Even if GTD has spread to other parts of the body, it is still highly curable.
The treatment of malignant GTD depends on the stage and number of risk factors which determine the type of drugs that will most likely cure the disease. The factors that are characteristic of women who are likely to be cured by one or more single chemotherapy drugs (called low-risk malignant GTD) are:
- The last pregnancy was less than 4 months ago
- The level of hCG in the blood is low
- The cancer has not spread to the liver, brain or other distant organs
- The patient has not received chemotherapy treatments earlier
The risk factors of women who develop malignant GTD who are NOT likely to be cured by one or more single chemotherapy drugs and who require treatments containing multiple agents to effect cure (called high-risk malignant GTD) are:
- The last pregnancy was more than four months ago
- The level of hCG in the blood is high
- The cancer has spread to the liver, brain and/or other distant organs
- The patient received chemotherapy earlier and the cancer did not go away
- The tumor began after completion of a normal pregnancy
Three kinds of treatment are used for malignant GTD: surgery (removing the cancer), chemotherapy (using drugs to kill the cancer) and radiation therapy (uses high energy x-rays to kill cancer cells and shrink tumors). The most common operation used for malignant GTD is hysterectomy, an operation to take out the uterus. Surgery may also be used to remove cancer involving the lungs and other organs which have not gone away with drug therapy.
Types and symptoms of GTD
GTD treatment options
Follow up after treatment
Hormone follow-up by measuring the level of hCG in the blood continues until the hormone level is normal for three weeks, then should continue monthly for 12 months (24 months or patients with Stage IV disease). During that time the patient should avoid pregnancy. Women who conceive within 12 months of completing chemotherapy have an increased risk of miscarriage, particularly if they have received multiple chemotherapeutic agents. If pregnancy occurs before follow-up is complete, tumor relapse may be difficult to detect and diagnosis of relapse may be delayed.
The chemotherapy used for the treatment of malignant GTD is generally well tolerated without long-term side effects with two exceptions:
- The use of multi-agent chemotherapy is associated with an earlier menopause.
- Women with high-risk GTN who require multi-agent chemotherapy which includes a drug called etoposide and survive for more than 25 years should be advised that they may be at increased risk of developing secondary tumors, particularly acute myeloid leukemia, colon cancer, melanoma and breast cancer.
Recurrent disease
GTD is a highly curable disease. Women with hydatidiform mole have an excellent prognosis and women with malignant GTD (called GTN) usually have a very good prognosis. Choriocarcinoma, for example, is an uncommon, yet almost always curable cancer. Although choriocarcinoma is a highly malignant tumor and life-threatening disease, it is very sensitive to chemotherapy. 85 to 90 percent of women with low-risk malignant GTD are cured by the initial chemotherapy and the remaining are cured by the use of stronger combinations of drugs or surgery. Similarly, 85 to 90 percent of women who develop high-risk malignant GTD are cured by chemotherapy used together with the selective use of surgery and radiation. Approximately ten to 15 percent of women with high-risk malignant GTD will develop drug resistance after prolonged chemotherapy. This group is made up of patients with stage IV disease that involves distant organs such as the brain, liver and bowel. Specially designed chemotherapy treatments using drugs that have been shown to be effective against other cancers are being employed to prolong life for many of these women.
Becoming Pregnant Again
After completing hormone follow-up for hydatidiform mole, women may try for pregnancy whenever they wish. The risk of another molar pregnancy is low. More than 98 percent of women who become pregnant following a molar pregnancy will not have a further hydatidiform mole or be at increased risk for complications. Since patients with hydatidiform mole are at increased risk of another molar pregnancy, it is advisable for them to undergo ultrasound examinations at ten weeks of gestation to determine if the pregnancy is progressing normally.
Most women who require treatment for malignant GTD can become pregnant again and can have normal pregnancy outcomes. After chemotherapy is completed women should postpone pregnancy for 12 months (24 months for women with stage IV disease) while they are being followed with hormone testing to make sure the tumor does not recur. There does not appear to be an increase rate of congenital malformation irrespective of the chemotherapy used. Following GTD the expectation of normal future pregnancy is about comparable to the general population.