Coping with your diagnosis
It can be very difficult coping with a diagnosis of bowel cancer, 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 cancer and how it is best treated. People who are well informed about their illness and treatment are better able to make decisions and cope with what happens.
Many people survive bowel cancer. But treatment can be hard and it takes time to fully recover. You may have side effects that generally improve over the weeks and months after treatment. But for some these may be long lasting.
Coping practically with bowel cancer
As well as coping with the fear and anxiety that a diagnosis of bowel cancer 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:
- Sick pay; and
See this section of the website:
- ‘Coping with financial implications of cancer’.
Asking for help
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. Your doctor or specialist nurse will know who you can contact for help. They can put you in touch with people specially trained in supporting those with cancer. These people are there to help so do use them if you feel you need to.
Staff can support you
You may need access to support staff, such as a stoma nurse or dietitian. 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.
What to expect after a bowel cancer diagnosis
How bowel cancer can affect you physically
Bowel cancer 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.
Surgery for bowel cancer may cause scarring. It can be especially difficult if you need to have a colostomy or ileostomy. You will then need support to help you learn how to deal with it. These body changes can affect your self esteem and the way you relate to other people, especially close family and friends.
After bowel surgery or radiotherapy you may have loose stools or diarrhoea for some time. Diarrhoea is more likely if you have had a large part of your bowel removed. You may also have diarrhoea alternating with constipation. Your doctor or specialist nurse can advise you on managing any changes in your bowel habits. If you are in a sexual relationship, one or all of these changes may affect your sex life.
In the section ‘Physical effects and sexuality’ there is information about:
• Coping with a stoma;
• Diarrhoea; and
• How bowel cancer can affect your sex life.
You may find that you need to change your diet to help your bowel work as normally as possible.
• See ‘Diet and nutrition after bowel cancer’, later in this booklet.
Another problem you may have to cope with is feeling very tired and lacking in energy a lot of the time, especially for a while after treatment or if your cancer is advanced.
• The ‘Fatigue’ section has more information.
Bowel cancer treatment options
Treating cancer with surgery is known as ‘surgical oncology’. Some types of cancer can be treated with surgery. This involves cutting away malignant tissue. Your doctor may recommend surgery for a number of reasons:
- Confirming a diagnosis;
- Removing a tumour;
- Staging (judging the size and extent of the cancer);
- Reconstructing a part of the body; and
- Palliative surgery to relieve symptoms.
You may have surgery before or after other cancer treatments such as:
- Chemotherapy; or
Different cancers may respond to different types of treatment and your treatment plan will be designed specifically for you.
Eight cancer centres
There are eight ‘designated cancer centres’ in Ireland that provide surgery and multidisciplinary care for cancers. These centres should give you quick access to high quality diagnosis and treatment. In general, you will be referred for care to the designated cancer centre closest to your home. There is a list of these centres and contact details in the section: ‘Supportive personnel’.
Some of your cancer care will be provided in a wider number of acute hospitals, for example:
- CT scans;
- Blood tests;
- Chemotherapy; and
- Palliative care.
St Vincent's University Hospital has some helpful information and videos on their website about treatment.
If you have bowel cancer you may receive radiotherapy:
- To destroy a tumour;
- To control symptoms, like pain;
- Before surgery to shrink your tumour so it is easier to remove; or
- After surgery, to destroy any small amounts of tumour that may be left.
In recent years there have been significant developments in clinical research and improvements in radiotherapy equipment which allow for more accurate treatment and less damage to non-cancerous cells. These new technologies enable patients to receive more accurate and precise treatment, frequently over a shorter time period.
These developments include:
- Intensity-modulated radiotherapy (IMRT);
- Image guided radiotherapy (IGRT); and
- Stereotactic radiotherapy.
Brachytherapy is a specific type of internal radiotherapy in which the radioactive material is placed directly into or near a tumour using a special needle, wire or catheter.
All radiotherapy centres in Ireland offer external beam radiotherapy and brachytherapy. Intensity modulated and image guided radiotherapy is available for specific tumour types in all centres.
Many patients who are diagnosed with bowel cancer will need some treatment with cancer drugs. Treatment with cancer drugs is usually led by a doctor known as a medical oncologist.
There are four main types of treatment with cancer drugs which together are often known as ‘systemic therapy’.
Chemotherapy drugs slow the process of cancer cells growing or multiplying. They are also sometimes called ‘cytotoxic drugs’. You may receive chemotherapy as a tablet that you swallow, or by injection.
The chemotherapy drugs doctors commonly use to treat bowel cancer include:
- Fluorouracil (also called 5FU) – often given with a vitamin called folinic acid;
- Capecitabine (Xeloda);
- Oxaliplatin (Eloxatin); and
- Irinotecan (Campto).
You may have chemotherapy before surgery for cancer of the back passage (rectal cancer). The chemotherapy aims to shrink the cancer and make it easier to remove during surgery. Chemotherapy before surgery is called neo-adjuvant chemotherapy (pronounced nee-oh-ad-joo-vant). You are likely to have this alongside radiotherapy (chemo-radiation).
You may have chemotherapy after surgery for bowel cancer. This is to reduce the chance of the cancer coming back and is called adjuvant chemotherapy.
You may also have chemotherapy as a treatment for bowel cancer that has spread (advanced bowel cancer).
Daily life with chemotherapy
Some people find that they can lead an almost normal life during chemotherapy. But others find everyday life more difficult.
You may feel unwell during and shortly after each treatment, but recover quickly between treatments. You may find you can get back to your usual activities as you begin to feel better.
If you are taking chemotherapy tablets at home, you may notice very little change to your everyday life. You may be able to work and carry on your usual social life. Some people manage by working part time or only between treatments. You may find that working helps you to cope with your cancer and distracts you. Or you may prefer to stop working while you are having your treatment.
Some treatments are harder going than others, and everyone is different. So it is best to do whatever you feel is right for you.
As well as feeling unwell physically, it is not unusual for people to have ups and downs emotionally. It can be difficult coping with a diagnosis of cancer and having treatment. So you may find you have good and bad days. Remember that there isn't a right and a wrong way to be.
Side effects of chemotherapy can include:
- Nausea and vomiting;
- Hair loss;
- Being vulnerable to infection;
- Bruising and bleeding;
- Pain and inflammation on the inside of your mouth;
- Loss of appetite;
- Skin becomes dry and sore;
- Short-term memory loss;
- Reduced libido;
- Loss of fertility, temporary or permanent;
- Diarrhoea and constipation; and
Living with and adapting to the side effects of chemotherapy can be challenging, but it is important to realise that most, if not all, side effects will disappear once treatment is complete.
Immunotherapy drugs specifically target cancer cells by inducing, enhancing or suppressing the body’s natural immune response. Some of these drugs may also be known as ‘monoclonal antibodies.’
Hormonal treatments interfere with the role of hormones in helping some cancers to grow.
Biological drugs help the immune system to fight cancer.
How is cancer drug treatment provided?
You may receive your cancer drugs as a:
- Liquid that you swallow; or
- By an injection.
Drugs provided as tablets may often be taken by you in your own home or sometimes in the hospital. It is important that you follow the instructions given to you on how to take the tablets and how often.
If you need to receive cancer drugs by injection, you will need to attend a hospital for your treatment but usually won’t need to stay overnight.
Treatment is usually provided in a special area of the hospital and you can usually sit in an armchair or a couch when receiving it. The amount of time needed to get your drug depends on the type of drug. It could last from under an hour to several hours. Specially-trained oncology nurses are on duty while you are in the hospital receiving your treatment.
Drugs which are provided by injection into a vein are known as ‘intravenous’ or ‘IV’. These drugs are usually administered through a ‘drip’ or through an IV syringe or ‘IV push.’
In some cases, you may have a ‘port’ inserted that will stay in place for some time to allow for easy access to a vein.
As well as injections into a vein, your cancer drugs may be injected in other ways, including:
- Under the skin (sub-cutaneous);
- Into a muscle (intra-muscular); or
- Into an artery (intra-arterial).
In some cases, topical treatments (applied directly to the skin) may be used for the treatment of skin cancer.
You may also receive other types of medication to help ease the side effects of the cancer drugs you receive. These may include medicine to help with:
- Diarrhoea; and