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Coping with molar pregnancy, persistent trophoblastic disease or choriocarcinoma

 Men and women discussing gestational trophoblastic tumours

This page is about coping with the feelings and practical difficulties you might face when you have a gestational trophoblastic tumour (GTT). There is information about

 

A quick guide to what's on this page

Coping with gestational trophoblastic tumours

Gestational trophoblastic tumours (GTTs) include molar pregnancy, placental site trophoblastic tumours, persistent trophoblastic tumour and choriocarcinoma. Because these tumours are rare, you may not have heard of them before. And other people probably haven’t heard of them either. There can be a lot to take in and learn.

These tumours are treated at specialist treatment centres with experienced staff. They will explain things to you and answer your questions. They have booklets that you and your family can read. If you are having treatment there you will meet other women in the same situation.

Coping with loss

If you thought you were pregnant, you will be trying to accept the loss of your pregnancy, as well as trying to understand your diagnosis. If you have been pregnant your hormones may also be changing, and this often leads to changes in mood. It can take time to adjust to what has happened. It can help to try to talk to the people close to you about how you feel.

Practical problems

As well as coping with your emotions, you have to work out how to manage practically. There is help if you have money matters to sort out. There is also help if you need to discuss things like – Who do you tell about your diagnosis? And how do you find the words? There may also be children to consider.

The coping with cancer section contains lots of information you may find helpful.

 

CR PDF Icon You can view and print the quick guides for all the pages in the living with a gestational trophoblastic tumour section.

 

 

Coping with your diagnosis

Gestational trophoblastic tumours (GTT) also called gestational trophoblastic neoplasia (GTN), includes molar pregnancies that need chemotherapy, choriocarcinoma, placental site trophoblastic tumours and epitheliod trophoblastic tumours. These tumours are rare so you may not have heard of them before. And other people probably haven't heard of them either. So there is a lot to take in and learn. 

It can be very difficult to cope with a diagnosis of GTT, both practically and emotionally. At first, you are likely to feel very upset, frightened and confused. Or you may feel that things are out of your control. It is very important to get the right information about your type of GTT and how it is best treated. People who are well informed about their illness and treatment are more able to make decisions and cope with what happens.

These tumours are treated in specialist treatment centres with experienced staff. The staff will explain things to you and answer any questions that you have. They have booklets that you and your family can read. If you are having treatment at these centres you will meet other women in the same situation. This can be another way of getting support and sharing information.

 

Coping with loss

Coping with a diagnosis of any type of gestational trophoblastic tumour is difficult. You are likely to feel a whole range of emotions. If you thought you were pregnant, you will be trying to accept and cope with the loss of your pregnancy, as well as trying to understand your diagnosis. If you have been pregnant your hormones may also be changing, and this often leads to mood changes.

It can take time to adjust to what has happened. So try and give yourself that time. It can help to try to talk to the people close to you about how you feel. Then they’ll be able to understand things better and support you as much as possible.

 

How GTT can affect you physically

GTT and its treatment may cause physical changes in your body. These changes can be very difficult to cope with and may affect the way you feel about yourself. Such changes can affect your self esteem and the way you relate to other people, especially close family and friends. Another problem you may have to cope with is feeling very tired and lethargic a lot of the time, especially if you have chemotherapy treatment. There is information about fatigue and cancer and treating cancer fatigue in the section about coping physically with cancer.

If you are having a sexual relationship, one or all of these changes may affect your sex life. There is information about changes in your sex life in the coping with cancer section. If you want to try again for a baby it is natural to wonder about when you will be able to do that and whether you are at risk of another GTT. There is information about these issues and contraception on our page about fertility after a GTT.

 

Coping practically

As well as coping with the fear and anxiety that a diagnosis of GTT brings, you may also have to work out how to manage practically. There may be money matters to sort out. You may need information about financial support, such as benefits, sick pay and grants. 

Who do you tell that you have a molar pregnancy or choriocarcinoma? And how do you find the words? You may also have children to think about. We have information about talking to people about your illness and how and what to tell children. One lady told us about telling her son she was ill

"I waited until I knew more about my diagnosis and treatment before telling my 10 year old son. My husband and I worked on our instinct and what we knew of our son to help us do this. We talked to him when I was at home before chemotherapy treatment. We explained that I was poorly and needed some treatment to help me get better".

Just try to remember that you don't have to sort everything out at once. It may take some time to deal with each issue.

You may have to travel a long way for your treatment at a specialist treatment centre. You may find that it is too far for your family to visit you in hospital very often, which may make you feel isolated. You may have a lot to sort out before you go for treatment. The staff at the specialist centre will be a good source of advice and support. They can help you sort out your transport to and from the specialist hospital. They can also give you advice about getting financial help if you need it.

 

More information about coping with GTT

The coping with cancer section has lots of helpful information. There are sections about

If you would like information about coping with GTT, you can contact our cancer information nurses. They would be happy to help. You can also contact one of the organisations on our GTT organisations page. Some have free factsheets and booklets that they can send to you. They may also be able to put you in touch with a support group. 

We have a GTT reading list. You can also find details of counselling organisations that can tell you about counselling and help you find sources of emotional support in your area.

If you want to find people to share experiences with online, you could use CancerChat, our online forum. Or go through My Wavelength. This is a free service that aims to put people with similar medical conditions in touch with each other.

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Updated: 23 June 2016