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Follow up for persistent trophoblastic disease and choriocarcinoma

Follow up appointments and tests after treatment for persistent trophoblastic disease (PTD) and choriocarcinoma. 

Why you have follow up

Persistent trophoblastic disease (PTD) is a tumour that can form in the womb after an abnormal type of pregnancy called a molar pregnancy. Choriocarcinoma is a very rare tumour that can occur after a normal pregnancy, a molar pregnancy, a miscarriage or a termination of pregnancy (abortion).

These tumours are types of gestational trophoblastic disease (GTD).

All women who have had a PTD or choriocarcinoma are monitored closely to check that the disease has completely gone and to look for any signs of it coming back. 

The length and type of follow up you have depends on the treatment you had and which specialist centre is looking after you.

What follow up involves

You have urine tests, blood tests or both to check your hCG level. The specialist centre will send you a pre paid kit for your tests which are sent back to the centre for processing. If you are having blood tests, your GP surgery may be able to do them for you. They should send the blood sample, with your urine sample if you've done one, to the specialist centre. 

If you have chemotherapy as part of your treatment, you have blood and urine tests frequently once the treatment has finished. Follow up might vary between the 2 specialist centres but usually you have an appointment to see the doctor around 6 weeks after finishing chemotherapy. You have blood and urine tests from weekly to 4 weekly for the first 6 months, your treatment centre will explain how often they want you to have these tests. 

For the next 6 months you might have urine tests every 2 to 4 weeks. During the next few years you send urine samples every few weeks. Then you send urine samples every 6 months for the rest of your life.

Your treatment centre will send you all the kits for these follow up tests when you need them, so you don’t need to worry about remembering yourself. You must let them know if you move house or your contact details change for any reason.

Future pregnancy

It is important not to get pregnant until your doctors say it is safe to try. If you have had chemotherapy treatment, UK guidelines recommend that you wait for 12 months from when you finished the chemotherapy before trying to become pregnant. It is fine to use hormonal contraception such as the pill or implants. 

If you do become pregnant before they recommend it, it is very important to let your specialist team know. Your hCG levels will go up with a normal pregnancy, so they won’t be able to monitor your GTD using your hCG levels. And after you have had your baby you will need to continue having further hCG tests.

Information and help

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