Coping with soft tissue sarcoma

Your feelings

You might have a number of different feelings when you're told you have cancer. You may feel shocked and upset. You might also feel:

• numb

• frightened and uncertain

• confused

• angry and resentful

• guilty

You may have some or all of these feelings. Or you might feel totally different. Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all.

Feelings are a natural part of coming to terms with cancer. All sorts of feelings are likely to come and go.

Helping yourself

You may be more able to cope and make decisions if you have information about your type of cancer and its treatment. Information helps you to know what to expect.

Taking in information can be difficult, especially when you have just been diagnosed or given news about your outlook. Make a list of questions before you see your doctor. Take someone with you to remind you what you want to ask. They can also help you to remember the information that was given. Getting a lot of new information can feel overwhelming.

Ask your doctors and specialist nurses to explain things again if you need them to.

You might feel that you don’t want to know much information straight away. Tell your doctor or nurse. You will always be able to ask for more information when you feel ready.

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.

You can also do practical things such as:

• making lists to help you

• having a calendar with all appointments

• having goals

• planning enjoyable things around weeks that might be emotionally difficult for you

How soft tissue sarcoma can affect you physically

Problems with scarring

Limb sparing surgery can be a very big operation involving cutting into a lot of tissue, bone and muscle. It may leave you with a long scar. You might have some tightness and discomfort if you have radiotherapy to the area, as this can make healthy tissues less stretchy over time.

Having major surgery and scarring can cause different problems.

Difficulty moving your limb

You will have trouble moving the affected limb to start with. But your physiotherapists will give you lots of exercises that will gradually make moving easier for you.

Changes in how you look

How you look is an important part of your self esteem. It can be very hard to accept sudden changes in your looks that you are not happy with.

It is not unusual for people who have had limb sparing surgery to feel confused and upset for some time after their operation. You may feel worried about how your friends and family see you. You may feel that you are no longer as physically attractive. Going back to work, meeting new people and going for job interviews can all be more of a struggle if you are coping with changes in your appearance. 

The important thing to remember is that the people closest to you will not see you any differently as a person. Try and talk to them, they can help to support you when they know how you feel.

Changes to your appearance might affect how you feel about sex.

Relationships and sex

The physical and emotional changes you have might affect your relationships and sex life. There are things that you can do to manage this.

Read about cancer, relationships and sex

If you have had an amputation

It can seem to take a long time before you can move around normally again and this may make you feel very low. It can take many months before you can put a lot of weight comfortably on your false leg. And it may take a while before your limb is completely comfortable. Most people get there within a year of their surgery.

There is help and support available if you need it. Your doctor could arrange counselling for you.

Sarcoma UK provides help and support for people with bone or soft tissue sarcomas. You can call or email them in confidence.

Read more on the Sarcoma UK website

Talking to other people

Talking to your friends and relatives about your cancer can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.

Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

Find out ways to help manage your emotions

You might find it easier to talk to someone other than your own friends and family. Or you may want to see a counsellor.

Coping practically

You and your family might need to cope with practical things including:

• money matters

• financial support, such as benefits, sick pay, prescription costs and grants

• work issues

• early retirement

• childcare

• Blue Badge applications

• help with travel costs

• changes to your house

Talk to your doctor or specialist nurse to find out who can help. You might be able to get some benefits for yourself and the person caring for you. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness.

Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospitals have a social worker available for people with cancer.

Read more about the practical support that is available to you