What happens after treatment for gestational trophoblastic disease?
Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about cancer coming back. (When cancer comes back after treatment, it is called recurrence.) This is a very common concern in people who have had cancer. It is a very real concern for some women with gestational trophoblastic (jeh-STAY-shuh-nul troh-fuh-BLAS-tik) disease (GTD). The risk of GTD returning is very small for molar pregnancies and low-risk GTD, but may be as high as 10% to 15% in women with high-risk GTD. For this reason, follow-up is very important.
It may take a while before your fears lessen. But it may help to know that many cancer survivors have learned to live with this uncertainty and are leading full lives. Our document Living With Uncertainty: The Fear of Cancer Recurrence gives more detailed information on this.
Follow-up doctor visits
When treatment ends, your doctors will still want to watch you closely. It is very important to go to all of your follow-up appointments. During these visits, your doctors will ask questions about any problems you may have and may do exams and lab tests or x-rays and scans to look for signs of cancer or treatment side effects. Almost any cancer treatment can have side effects. Some may last for a few weeks to months, but others can last the rest of your life. This is the time for you to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have.
Your medical team will set up a program of follow-up visits and tests to make sure that everything is all right. The exact steps in the follow-up program depend on the type of GTD you had and the treatment you received.
In all cases, the most basic test involves measuring levels of HCG (human chorionic gonadotropin [HYOO-mun KOR-ee-AH-nik goh-NA-doh-TROH-pin]) in the blood. Rising HCG levels may indicate that the disease is growing again in the uterus (if hysterectomy was not done) or that it has spread to another location and is growing there. Different treatment centers follow different schedules. For molar pregnancies, blood HCG levels are usually taken weekly until the results are normal for at least 3 consecutive weeks, then monthly for at least the next 6 months. For other forms of GTD, the follow-up period may be extended to a year or 2 following treatment for those who have metastatic GTD with risk factors.
If you had a placental site trophoblastic tumor, HCG levels aren’t helpful, and levels of human placental lactogen (hPL) will be used instead.
Your doctor will most likely recommend that you have a physical exam about every 3 to 6 months for the first year, then about every 6 months. Depending on your situation, you may need to have certain tests or procedures, such as chest x-rays or other imaging tests, from time to time. Ask your doctor what kind of follow-up schedule you can expect.
It is important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think of their cancer coming back, this could happen.
If cancer does recur, it will most likely be detected with blood HCG tests before it causes any symptoms. Still, if you notice any new symptoms you should report them right away so that the cause can be determined and treated, if needed.
If GTD does come back, in most cases it can be treated successfully. For more information, see “Recurrent gestational trophoblastic tumors” in the section “Treatment of gestational trophoblastic disease by type and stage.” Also, our document When Your Cancer Comes Back: Cancer Recurrence can give you information on how to manage and cope with this phase of your treatment.
Avoiding pregnancy during follow-up
If you did not have your uterus removed (a hysterectomy), it is important to avoid getting pregnant during the follow-up period. Talk with your doctor about how long this should last and whether oral contraceptives (birth control pills) or a barrier method of birth control (such as a diaphragm or condoms) might be best for you. Most doctors advise against using intrauterine devices (IUDs), as they might increase the risk of bleeding, infection, or puncturing of the uterine wall if tumor is still present.
Most women who have had a molar pregnancy can have normal pregnancies later. Studies have found that women treated for gestational trophoblastic disease (GTD) have near normal risks of problems such as stillbirths, birth defects, premature babies, or other complications. However, if you do get pregnant and have had GTD once before, there is about a 1% to 2% chance that you could have another molar pregnancy. It can be a complete or partial molar pregnancy. You should have a pelvic ultrasound exam within the first 13 weeks (first trimester) of pregnancy to make sure everything is proceeding normally.
If you give birth, your doctor may request a microscopic examination of the placenta to look for any lingering signs of GTD. You will also need to have your HCG level measured about 6 weeks after the end of any subsequent pregnancy, whether it was a normal birth, abortion, or miscarriage.
One question many women ask is whether they are more likely to get another type of cancer later on. Having had gestational trophoblastic disease (GTD) does not raise your risk of getting other cancers. However, some chemotherapy drugs sometimes used to treat GTD can increase the risk of certain other types of cancer (most often leukemia). This is rare after treatment of low-risk GTD but is slightly more common with certain drugs used for high-risk GTD, such as etoposide and cyclophosphamide.
Seeing a new doctor
At some point after your cancer diagnosis and treatment, you may find yourself seeing a new doctor who does not know anything about your medical history. It is important that you be able to give your new doctor the details of your diagnosis and treatment. Make sure you have this information handy:
- A copy of your pathology report(s) from any biopsies or surgeries.
- If you had surgery, a copy of your operative report(s).
- If you were in the hospital, a copy of the discharge summary that doctors prepare when patients are sent home.
- If you received chemotherapy, a list of the drugs, drug doses, and when you took them.
- If you had radiation therapy, a copy of the treatment summary.
- Copies of any imaging tests (ultrasounds, CT scans, etc.) you have had (these often can be put on a DVD).
The doctor may want copies of this information for his records, but always keep copies for yourself.
Last Medical Review: 02/06/2014
Last Revised: 03/03/2014