Coping and support when you have metastatic bowel cancer

Metastatic bowel cancer is cancer that has spread from the back passage (rectum) or large intestines (colon) to other parts of the body, such as the liver. Sometimes cancer has spread when it is first diagnosed. Or the cancer has come back and spread after treatment for the original cancer. It's also called advanced bowel cancer.

Doctors might also describe your bowel cancer as advanced if both:

• you’re not able to have surgery to remove the cancer
• the cancer has not spread to another part of the body

Treatment for metastatic bowel cancer can keep it under control, relieve symptoms and give you a good quality of life.

In a few people with metastatic bowel cancer, treatment can control the cancer for a long time. And for a small number of these people, a cure might be possible. This is usually only possible if your cancer has spread to just one other body part and the surgeon can completely remove this, as well as the cancer in your bowel. 

How you might feel

Finding out that you can’t be cured is distressing and can be a shock. It’s common to feel uncertain and anxious. It's normal to not be able to think about anything else.

Lots of information and support is available to you, your family and friends. Some people find it helpful to find out more about their cancer and the treatments they might have. Many people find that knowing more about their situation can make it easier to cope.

Talk to your doctor or specialist nurse to understand:

• what your diagnosis means

• what is likely to happen

• what treatment is available

• how treatment can help you

• what the side effects of the treatment are

You may also feel embarrassed about having metastatic cancer of the bowel or the rectum. Our bowels and going to the toilet are very private matters for many people. But your treatment team are used to talking about these things. And it's up to you who you decide to talk to. 

Talking about advanced cancer

Your friends and relatives might be able to support you and talk to you about your cancer. Sharing can help to increase trust and support between you and make it easier to plan ahead. But some families are scared of the emotions this could bring up. So they may not want to discuss it. They might worry that you won't be able to cope with your situation.

It can strain relationships if your family or friends don't want to talk. You can help your family and friends by letting them know you would like to discuss what’s happening and how you feel.

You might find it easier to talk to someone outside your own friends and family.

Counselling might help you find ways of coping with your feelings and emotions. You can call the Cancer Research UK nurses on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.

Planning

Thinking about your priorities and planning what you want to do can help you to feel more in control. You might want to talk about how you want to spend your time and what is and isn’t important to you.

Some of your future plans might no longer be realistic. But you might get round to doing something you always wanted to do but weren’t able to make time for.

You can talk to your doctor about managing your treatment around your plans. Or if you can have your treatment at the same time. Your specialist nurse will be able to support you and help you arrange this.

Physical changes

Advanced bowel cancer is likely to cause physical changes in your body. Community cancer nurses or symptom control nurses can help to support you at home.

You might have had surgery and radiotherapy. This can cause scarring. And you might have loose stools or diarrhoea for some time.  

It can be difficult if you have an opening onto the skin from the inside of your bowel (colostomy). You will need support to learn how to deal with it.

You might also feel very tired and lacking in energy a lot of the time.

Feeling as well as you can

It is important that you feel as well as you possibly can. Tell your doctor or nurse about any symptoms you have so they can help to control them.

Coping financially

You might have extra expenses due to the cancer. Your specialist nurse or GP can help you get grants for heating costs, holidays or household expenses related to your illness.

Ask to see a social worker. They can let you know which benefits or grants you can claim and help with the claiming process.  

Who can help?

You can get emotional and practical support through your hospital, local hospice and GP surgery. You can also get help from charities and support groups.

Support at home for you and your family

You might need some care and support at home due to metastatic bowel cancer . A lot of practical and emotional support is available to you.

GP and nursing support

Your GP manages your healthcare when you are at home. They can help with any medical problems that come up. They can also make referrals to a community service for you. The availability of the different community services may vary depending on where you live.

District nurses

These nurses work in different places in your local area and may visit you in your home. They can:

• give medicines or injections

• check temperature, blood pressure and breathing

• clean and dress wounds

• monitor or set up drips

• give emotional support

• teach basic caring skills to family members where needed

• get special equipment such as hospital beds, special mattresses, commodes or bed pans

Community services vary from area to area. Your hospital specialist nurse can tell you what is locally available to you.

Community specialist palliative care nurses

Community specialist palliative care nurses include Macmillan nurses and hospice nurses. They specialise in symptom management such as pain control, sickness, and other cancer symptoms. They also give emotional support to you and your carers.

Marie Curie nurse

Marie Curie nurses give nursing care to people with advanced cancer in their own homes. They can visit during the day or spend the night in your home to give your carers a break.

The stoma nurse

Stoma nurses are experienced in looking after stomas (ileostomies and colostomies) and teaching you how to look after them. A specialist nurse will visit you on the ward to show you what to do.

The stoma nurse will see you on the day of the operation. They use a pen to mark where a stoma might be created. For the first few days after your operation the stoma nurse will help you look after and clean the stoma, and change the bags. This is called stoma education. They will also help you to find which type of stoma bag is the best for you.

Your stoma nurse will give you stoma bags to take home. You get more from the chemist or a local stockist. Supplies are free, but you need a prescription from your GP. 

Social workers

Social workers can help to support you with your situation at home. They can arrange:

• home helps to help with shopping or housework
• home care assistants for washing and dressing
• meals on wheels
• respite care

Your social worker can also help with money matters by checking you get all the benefits you are entitled to. Or they can advise you about charity grants for things like extra heating costs or special diets.

Contact a social worker yourself by getting in touch with your local social services office. Or ask your hospital nurse or your GP to refer you.

Local support services

There is usually other help available but services can vary from place to place.

Sometimes local voluntary groups offer sitting services. Someone comes to stay with you while your relative goes out.

Good neighbour schemes offer befriending or practical help with shopping or transport.

Local cancer support groups often offer practical help. And they are a good source of information about services in your area. Ask your doctor or nurse about local groups.

Towards the end of life

It’s natural to want to find out what is likely to happen in the last few weeks or days of life.

You might need to choose where you want to be looked after and who you want to care for you.