Coping with mesothelioma | Cancer Research UK
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Coping with mesothelioma

It can be very difficult coping with a diagnosis of cancer, both practically and emotionally. You are likely to feel very confused and upset at first. Mesothelioma is often diagnosed at quite an advanced stage. As well as coping with your diagnosis, you may be trying to cope with the news that your cancer is very difficult to treat and unlikely to be curable.

As well as coping with the fear and anxiety that a diagnosis of cancer brings, you have to work out how to manage practically. There may be money matters to sort out. Who do you tell you have cancer? There may be children or grandchildren 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 mesothelioma section.


Coping with your diagnosis

It can be very difficult to cope with a diagnosis of mesothelioma, both practically and emotionally. At first, you are likely to feel very upset, frightened and confused. Or that things are out of your control. It is very important to get the right information about your type of cancer 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.


How mesothelioma can affect you physically

Mesothelioma 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. You may have symptoms such as a cough or breathlessness. We have a page about coping with breathlessness. Surgery may cause scarring and you may have pain in the area for some months afterwards. Such body 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 for a while after treatment or if the cancer is advanced. There is information on fatigue and cancer and treating cancer fatigue in the section on 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 how cancer can affect your sex life in the coping with cancer section.


Coping practically with mesothelioma

As well as coping with the fear and anxiety that a diagnosis of mesothelioma 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 cancer? And how do you find the words? You may also have children to think about. We have information about talking to people about your cancer and how and what to tell children.

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. Do ask for help if you need it though. Your doctor or specialist nurse will know who you can contact to get some help. They can put you in touch with people specially trained in supporting those with cancer. These people are there to help and want you to feel that you have support. So use them if you feel you need to.

You may need to have access to support staff, such as a physiotherapist or dietician. Social workers can help you with information about your entitlement to sick pay and benefits. If you live alone, a social worker may be able to help by organising convalescence when you first come out of hospital.


Compensation and claiming benefits

Most cases of mesothelioma are related to exposure to asbestos. If you know you were exposed to asbestos at work, you may be able to claim compensation from your employer at the time of the exposure. It may be helpful for you and your family to have some extra funds to help you to cope with the illness and its treatment.

You may be able to claim Industrial Injuries Disablement Benefit (IIDB). IIDB is a benefit that you can claim if your disability was caused by your work. Or you may be able to make a claim for a one off payment under the Pneumoconiosis Etc (Workers' compensation) Act. There is information about IIDB and information about the Pneumoconiosis Act on the department of work and pensions website. 

If you are interested in trying to make a compensation claim, you can ask your specialist nurse or social worker for advice. You can also look at our mesothelioma organisations page to find helpful organisations. Your doctor will have come across this before with mesothelioma and will be able to provide evidence supporting your claim.


More information on coping with mesothelioma

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

If you would like more detailed information about coping with mesothelioma, contact one of the organisations on our mesothelioma organisations list. They will be happy to help. They often have free factsheets and booklets they can send to you. They may also be able to put you in touch with a support group. We also have a mesothelioma reading list with details of helpful booklets and leaflets.

You can also contact our cancer information nurses. They would be happy to help.

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Updated: 24 November 2015