It may take a while before your confidence in your own recovery begins to feel real and your fears are somewhat relieved. You can learn more about what to look for and how to learn to live with the possibility of cancer coming back in our document, Living With Uncertainty: The Fear of Cancer Recurrence.

Follow-up is an important part of the overall treatment plan for gestational trophoblastic disease (GTD). Even after treatment, there is a chance that it could return. This risk 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.

Follow-up doctor visits

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 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 years following treatment for those who have metastatic GTD with risk factors).

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.

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 the section, "How is gestational trophoblastic disease treated?"

Avoiding pregnancy during follow-up

If you did not have 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) might be best for you. Most doctors advise against using intrauterine devices (IUDs), as they may increase the risk of bleeding, infection, or puncturing of the uterine wall if tumor is still present.

Later pregnancies

Most women who have had a molar pregnancy can have normal pregnancies later. Studies have found that women treated for GTD have near normal risks of problems such as stillbirths, birth defects, premature babies, or other complications. However, if you do get pregnant, there is about a 1% to 2% chance that another molar pregnancy will occur. 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.

Later cancers

One question many women ask is whether they are more likely to get another type of cancer later on. Having had gestational trophoblastic disease 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.

Seeing a new doctor

Some time after your cancer diagnosis and treatment, you may find yourself in the office of a new doctor. Your original doctor may have moved, or retired, or you may have moved or changed doctors for other reasons. It is important that you are able to give your new doctor the exact details of your diagnosis and treatment. There are certain pieces of information you should have in your possession. These are:

• A copy of your pathology report from any biopsies or surgeries.
• If you had surgery, a copy of your operative report.
• Copies of reports for any imaging tests (ultrasounds, CT scans, etc.) you have had.
• If you were hospitalized, a copy of the discharge summary that doctors must prepare when patients are sent home.
• If you received chemotherapy, a list of the drugs and the final doses of each that you received.
• If you had radiation therapy, a summary of the type and dose of radiation and when and where it was given.

It is also important to keep medical insurance. Even though no one wants to think of their cancer coming back, it is always a possibility. If it happens, the last thing you want is to have to worry about paying for treatment. Should your cancer come back our document, When Your Cancer Comes Back: Cancer Recurrence gives you information on how to manage and cope with this phase of your treatment. 

How about your emotional health?

Once your treatment ends, you may find yourself overwhelmed by emotions. This happens to a lot of people. You may have been going through so much during treatment that you could only focus on getting through your treatment.

You may find that you think about the potential of your own death, or the effect of your cancer on your family, friends, and career. You may also begin to re-evaluate your relationship with your spouse or partner. Unexpected issues may also cause concern -- for instance, as you become healthier and have fewer doctor visits, you will see your health care team less often. That can be a source of anxiety for some.

Getting through treatment for any type of cancer can be a major life stressor, but it may be even more distressing with GTD because it is the result of pregnancy. Patients and their partners have to deal with the loss of a pregnancy at the same time they are faced with treating the tumor.

This can be an ideal time to seek out emotional and social support. You need people you can turn to for strength and comfort. Support can come in many forms: family, friends, cancer support groups, church or spiritual groups, online support communities, or individual counselors.

Almost everyone who has been through cancer can benefit from getting some type of support. What's best for you depends on your situation and personality. Some people feel safe in peer-support groups or education groups. Others would rather talk in an informal setting such as one-on-one with a trusted friend or counselor. Whatever your source of strength or comfort, make sure you have a place to go with your concerns.

The cancer journey can feel very lonely. It is not necessary or realistic to go it all by yourself. And your friends and family may feel shut out if you decide not include them. Let them in -- and let in anyone else who you feel may help. If you aren't sure who can help, call your American Cancer Society at 1-800-227-2345 and we can put you in touch with an appropriate group or resource.

You can't change the fact that you have had cancer. What you can change is how you live the rest of your life -- making healthy choices and feeling as well as possible, physically and emotionally.

Last Medical Review: 10/13/2009
Last Revised: 10/13/2009