What is it?

Pain in peritoneal mesothelioma varies from person to person, and often depends on the causes of the pain. Some words used to describe pain can include “discomfort”, “aching”, “soreness”, “a twinge”, “sharp”, “stabbing”, “tightness” or “bloating”. You may be asked to describe your pain by your doctor or nurse, as this can help them work out the type of pain you are having and suggest the best type of treatment for it.  Generally, most types of cancer pain can be reduced, so let your doctor, nurse or pharmacist know if you are in pain. They can assess your pain and suggest ways to help, for example pain killing medication. 

How can it be managed?

Some complementary therapies, such as relaxation, massage, reflexology or acupuncture can also help with pain. Your local nurse, cancer information centre, hospice or support group may be able to give you more information about this.   

For further information on this, see the Macmillan booklet “Managing Cancer Pain”. 

What is it?

Peritoneal mesothelioma causes thickening of the membranes surrounding the abdominal organs and often a collection of fluid in the abdomen. The collection of fluid is called ascites and causes swelling of the abdomen.   

The symptoms of ascites can be distressing. The abdomen may become very swollen and distended, which can be uncomfortable or painful. It can also cause difficulty in getting comfortable, sitting up or walking. It can make you feel tired (lethargic) and breathless. It may cause you to feel nauseous or may make you physically sick. It may give you indigestion and you may lose your appetite.

How can it be managed?

Draining ascites can often help relieve pain and discomfort in the abdomen. It can also reduce the risk of bowel obstruction. The fluid is normally drained with the help of an ultrasound scan which guides the doctors to where the fluid is located. Putting a tube into the abdomen to drain it is known as a procedure called paracentesis. The drain is usually inserted by a doctor and the procedure can be done in the ward or in the clinic. Sometimes a small amount of fluid can be drained in the clinic. If there is a large amount of fluid however, the procedure may need to be carried out in hospital under the supervision of the doctors and nurses and the drain may stay in place for a period of 2–3 days. It is possible for the ascites to build up again and drainage may need to be carried out more than once.  

If the fluid becomes very troublesome and builds up on a regular basis, it may be possible to insert a permanent drainage tube under the skin of your abdomen which will stay in for as long as needed and can be looked after at home. This can reduce the number of times you have to come to the hospital, and usually involves a district nurse coming in once or twice a week to drain the fluid.  

Alongside draining the fluid, water tablets (diuretics), chemotherapy and other types of cancer therapies can also help control the fluid.  

For further information on this, see the Mesothelioma UK booklet “Ascites”. 

What is it?

The feeling of sickness (nausea) or being sick (vomiting) can happen for a number of reasons. Finding the reason for the sickness is usually the best way to treat it, either by relieving the problem if this is possible, or by working out the best type of anti-sickness medication to try. It is always worth discussing this with your doctor, nurse or pharmacist so that they can advise you.  

With peritoneal mesothelioma, the tumour and ascites in the abdomen can squash the internal organs including the stomach. This can make you feel nauseous or it can make you feel as if you have indigestion. Being constipated can also make you feel sick, as can some chemotherapy drugs and other medication such as antibiotics or painkillers.  

Advise your doctor or nurse immediately if you are being very sick as you may need help to replace the fluid that you are losing. You may also need further investigations such as an X-ray or scan of your abdomen to make sure that the tumour is not obstructing your bowel.  

Your doctor may want to do a blood test to see if there is another reason for your nausea, as sometimes the salts in your blood can be affected by the mesothelioma or the treatments you are on, causing you to feel sick. 

Indigestion is pain or discomfort in your upper abdomen or a burning pain behind your breastbone. It can make you bring up wind and feel nauseous. It can also be described as “acid” or “reflux”, and food or fluid may come up into your gullet. Some medications and foods can make indigestion worse, so it is worth asking your doctor, nurse or pharmacist about this. Anxiety can also be a factor. There are medications that can help with indigestion depending on the cause of it, so ask for advice. 

What is it?

Nausea, constipation and diarrhoea can all contribute to weight loss. Sometimes, if you have extra pressure in your abdomen, you will feel full much sooner than normal and this will also make you eat less. The mesothelioma you can cause weight loss even if you are eating normally. 

For further information on this, see the Mesothelioma UK booklet “Mesothelioma and Diet”, or ask your doctor or nurse if you can see a dietitian. 

What is it?

Fatigue is another word for feeling tired and lacking energy. It is very common in people with mesothelioma, affecting as many as nine out of ten. Fatigue can be acute (short lived and reversible), or it can be chronic (longer lasting and caused by an underlying illness). Fatigue can be due to many reasons. Mesothelioma can cause changes in your body that can lead to tiredness. Not eating very well, lack of sleep and exercise, certain pain killers, chemotherapy and anxiety can all contribute to fatigue.   

Fatigue can be very frustrating for you and your family, as you cannot do all the things you would like to do. It can make you feel less good about yourself and your role within your family group.  

How can it be treated?

Activity can help with fatigue along with a number of things. It can strengthen your muscles, joints and bones, help with your balance and look after your heart, it can improve your mood, reduce anxiety, help you eat and sleep better and decrease your chances of becoming constipated. Activity does not always mean going to the gym, running long distances or generally doing intensive exercise, it can be simple things like going for a short walk or even staying out of bed longer than normal. 

You can get advice about exercise from a physiotherapist, an occupational therapist or nurse, although you may need to ask for a referral for this. You can ask if there is a local exercise scheme for people with cancer, or a local support group. Your hospice will also often have access to physiotherapists and occupational therapists. 

For further information on this, see the Macmillan booklet “Coping with Fatigue (Tiredness)”. 

What is it?

For many people, having a diagnosis of mesothelioma can be overwhelming, and will affect their lives in many ways. This can be in a practical, everyday way, but it can also affect how you feel about your life, your relationships, your work and your finances. All of these can lead to uncertainty, fear, a loss of control, and can affect your ability to cope with your mesothelioma diagnosis.  The feelings can be so overwhelming that they may prevent you managing day to day. You may want to be alone, you may want your family and friends around you.  There is no right or wrong way to react, and that reaction will be individual to you. 

How can it be treated?

Talking about your feelings is usually a good place to start.  Talking about how you feel, what worries or frightens you, can sometimes help you practically and emotionally.  For a lot of people, talking to friends and family is enough, but for some, talking to a professional is easier and feels safer. Professionals include your doctor and nurse, counsellors, physiotherapists, occupational therapists, or people who provide complementary therapies such as massage, reflexology or relaxation. 

Ask your nurse or your cancer information centre if there are any local support groups. These are groups where you can meet other people with mesothelioma who may be able to understand how you are feeling. These groups are usually open to carers, partners and families as well. They often include practical education on related issues, but also provide a social space where you can meet other people in a similar situation to you. They are often run by local Asbestos Victim Support Groups and specialist mesothelioma nurses. The Mesothelioma UK website has an up to date list of support groups on their website and there is an online virtual support group specifically for peritoneal mesothelioma. 

For further information on this, see the Macmillan booklet “Coping with your Emotions”.