Malignant Trophoblastic Gestational Disease (Neoplasia)

The following information explains the reasons for the monitoring and treatment your doctor has suggested, and is an addition to the information letter.

What is malignant trophoblastic gestational disease?

Malignant trophoblastic gestational disease (or gestational trophoblastic neoplasia) refers to a range of conditions affecting the placenta. The main conditions are choriocarcinoma or invasive mole. The incidence of choriocarcinoma is estimated at around 1 in every 40,000 pregnancies. They are due to the proliferation and eventual propagation of a benign trophoblastic gestational disease, more commonly known as a “mole”, Moles are abnormalities that occur in the spermatozoid fertilization of the ovum; the reason is unknown. The placenta then develops in an abnormal fashion. There are two types of mole: one is known as “complete” in which there is no embryo, or “partial” in which the embryo develops but cannot survive. The placenta is abnormal in both cases.

Why must I be monitored?

Even after careful removal of the mole by curettage and aspiration, there is a risk that the molar tissue may persist in the uterus; it is difficult to see. The tissue may grow and spread (malignant trophoblastic gestational disease or trophoblastic gestational neoplasia). This risk justifies a simple test to monitor levels of the pregnancy hormone (ßhCG) on a regular basis. In 85% of patients, the hormone returns to normal (negativation) without problem.

Why do I need treatment?

Trophoblastic gestational neoplasia can spread to other organs, which is why you should be treated; in most cases, this would be via chemotherapy. You must first undergo a series of radiographic examinations (X-ray, ultrasound, CT scan, MRI) and various blood tests to determine the best treatment for you. Each patient must be assessed individually to find out whether their disease is low- or high-risk.

What type of chemotherapy will I need?

Most patients are “low-risk” and only need one kind of medication in their chemotherapy. Sometimes, when the risk is higher, several medications must be administered simultaneously. The treatment is given via injection in a muscle or vein.

In most cases, treatment is on an outpatient basis and rarely requires hospitalization. About 20% of patients will have to change the medication, because their response is inadequate or they cannot tolerate the treatment.

How long will my treatment last?

The length of treatment varies depending on the patient and how quickly the disease responds to the treatment. Generally speaking, it can be a few weeks to 2-3 months. It is continued until ßhCG levels become normal again for some weeks, for safety reasons.

What will be the psychological impact?

It is usual to feel a bit depressed and sad if you have to deal with this condition. These feelings can vary over time and depend on the individual. Your partner may also feel depressed and anxious. It is important to ask all the questions that cause you concern and, if there is still something else, you should contact our psycho-oncologist.

What will be the physical impact?

Chemotherapy can give the impression your body image has changed. Most patients receive monochemotherapy (only one medication) and will experience few side effects. They will not lose their hair, will be able to continue their normal activities and will have a minimal amount of nausea. Patients who require polychemotherapy (several medications) are given medication to reduce side effects as much as possible (nausea, fatigue, hair loss). We do not recommend exposure to the sun or UV lamps during the course of the treatment.

What method of contraception can I use?

We strongly advise the use of the Pill throughout the monitoring period, unless contraindicated. The reason is that if you become pregnant again, we would be unable to differentiate in the early stages between a normal pregnancy and a recurrence of trophoblastic gestational neoplasia, as ßhCG levels increase in both cases

When will I start menstruating again?

Sometimes, periods continue without interruption. Otherwise, they generally start again 4-6 weeks after the end of chemotherapy, and will be regular if you take the Pill. It is important that you tell your doctor if abnormal bleeding occurs outside your period.

What will the follow-up be after chemotherapy?

A blood test of your ßhCG levels will be taken every month for 12-18 months.

When will I be able to become pregnant again?

Usually, chemotherapy has no effect on your fertility or your risk of miscarriage. You can consider a new pregnancy 12 to 18 months after the end of the monitoring period when ßhCG levels return to normal (negativation). The risk of a mole recurring is very low at that point, and is estimated to be approximately 0.5 to 1%. It is important to have an ultrasound during the pregnancy to make sure that there are no problems and an ßhCG test 6 weeks after delivery to ensure there is no relapse.

Do I have cancer?

Trophoblastic gestational neoplasia are malignant, which means that they can grow and spread elsewhere in the body if they are not treated. They correspond to the definition of a cancer in that respect but, fortunately, the treatment success rate is almost 100% if the proper treatment is administered.

Who can answer my questions?

Without wishing to do so, your family or those close to you can sometimes give you information which is incorrect or only partly right. The fact that this group of diseases is rare means it is often not properly understood. It is important for you to obtain information from doctors specializing in this field or Internet sites run by teams who are used to treating this type of patient. You can contact us if you need advice or information about your monitoring.

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