Living As a Gestational Trophoblastic Disease Survivor

Completing treatment can be both stressful and exciting. You may be relieved to finish treatment, but find it hard not to worry about a tumor coming back. (When a tumor comes back after treatment, it is called recurrence.) This is a very common concern in people who have had either a benign or malignant tumor. It is a very real concern for some women with gestational trophoblastic disease (GTD). The risk of GTD returning is very small for molar pregnancies and low-risk GTD, but might 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 women with GTD have learned to live with this uncertainty and are leading full lives. See Understanding Recurrence for more on this.

Follow-up care

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. Depending on the type of GTD you have, your doctor may 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 imaging tests, from time to time. 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 . Remember that treatment for GTD 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.

Ask your doctor for a survivorship plan

Talk with your doctor about developing your survivorship plan. This plan might include:

  • A suggested schedule for follow-up exams and tests
  • A schedule for other tests you might need in the future, or tests to look for long-term health effects from your condition or its treatment
  • A list of possible late- or long-term side effects from your treatment, including what to watch for and when you should contact your doctor
  • Diet and physical activity suggestions
  • Reminders to keep your appointments with your primary care provider (PCP), who will monitor your general health care 

The most basic follow-up test imeasures levels of HCG (human chorionic gonadotropin ) in your 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 measured instead.

If a tumor 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 on treating recurrent GTD, see Treatment of Gestational Trophoblastic Disease by Type and Stage.

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.

Later pregnancies

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.

Keeping health insurance and copies of your medical records

Even after treatment, it’s very 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.

At some point after your cancer treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment. Learn more in Keeping Copies of Important Medical Records.

Second cancers after treatment

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.

Can I lower my risk of GTD progressing or coming back?

If you have (or have had) GTD, you probably want to know if there are things you can do that might lower your risk of it growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Unfortunately, it’s not yet clear if there are things you can do that will help.

Adopting healthy behaviors such as not smokingeating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. However, we do know that these types of changes can have positive effects on your health that can extend beyond your risk of lymphoma or other cancers.

About dietary supplements

So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of cancer progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Dietary supplements are not regulated like medicines in the United States – they do not have to be proven effective (or even safe) before being sold, although there are limits on what they’re allowed to claim they can do. If you’re thinking about taking any type of nutritional supplement, talk to your health care team. They can help you decide which ones you can use safely while avoiding those that might be harmful.

Getting emotional support

Some amount of feeling depressed, anxious, or worried is normal when x cancer is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others. Learn more in Life After Cancer.

 

The American Cancer Society medical and editorial content team
Our team is made up of doctors and master’s-prepared nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.

Last Medical Review: November 21, 2017 Last Revised: November 28, 2017

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