Living with bladder cancer

Living with a urostomy

Some people with cancer of the bladder will need the operation that leads to having a urostomy. This can feel very frightening at first. Learning to look after a urostomy takes time and patience, but help is available. Like anything new, it gets easier with practice.

• Daily life
• The stoma
• Appearance
• Stoma supplies
• Support

Daily life

Most people who have a urostomy can get back to a normal life. Many go back to their jobs and take up their favourite pastimes again, including swimming. Most hospitals have specially trained nurses called stoma care nurses, who will show you how to look after your urostomy and help you cope with any problems. You may also find it helpful to talk with someone who has already learned to live with a urostomy. Your nurse or doctor may be able to arrange for a volunteer to visit you and talk to you about how they coped. This kind of advice can be very helpful, especially in the first few months after your operation.

The stoma

Before your operation, the doctor or nurse will carefully plan the position of your stoma. This is to make sure your bag will stay in place whether you are sitting, standing or moving about. The stoma is usually formed on the abdomen, to the right of the belly button (navel). Sometimes the stoma can be tailored to a person's particular need. For example, a keen golfer may prefer a left-sided stoma so that it doesn't interfere with playing golf.

For the first few days after your operation, your nurse will look after your urostomy for you. They will make sure that the bag is emptied and changed as often as necessary. At first your stoma will be slightly swollen and it may be several weeks before it settles down to its normal size. The stoma will also produce mucus (a thick white substance).

As soon as you feel ready, the nurse will show you how to clean your stoma and change the bags. It may be helpful for a close relative or friend to join you at this time in case you ever need help at home. There are different types of bag (appliance) available and your nurse will help you to choose one that suits you best. When you're changing your bag allow yourself plenty of time and privacy, so that you can do things at your own pace and without interruptions.

Appearance

Most urostomy bags are designed to be flat so that they can't be noticed under your clothes. However, the size and position of the stoma will be the most important factor in how noticeable the bag or appliance is through your clothes.

The style of clothes you wear is also important. Many young people with a urostomy can wear their tightest clothes without anyone knowing they have a stoma bag. Although you may be very aware of your urostomy, people won't usually notice it unless you choose to tell them.

Stoma supplies

Before you leave hospital the nurse will make sure you have a good supply of urostomy bags. When you are at home you can get all your supplies from your chemist. As some chemists don't have a very large stock, it's often a good idea to give them your order well in advance. Sometimes it is better to get your supplies direct from a local stockist. The Urostomy Association can give you details of stockists close to you.

Support

Once you're at home you will still be able to phone your stoma care nurse for advice and you may have contact with a community stoma nurse. The hospital staff can arrange for a district nurse to visit you when you first leave hospital and are recovering. The nurse can help to sort out any problems you may have with your urostomy.

How surgery for invasive bladder cancer may affect your sex life

Apart from the psychological adjustments, the operation may have made physical changes which can cause problems with sex.

Although your doctors will do all they can to prevent nerve damage during the operation it may not be possible to avoid it. If nerve damage occurs it can be difficult for a man to get an erection.

Women may find that the sensations they have during sex are different, as the vagina is usually smaller.

• Men
• Women
• Talking about sex
• Sex is safe

Men

If you have problems getting or maintaining an erection there are several options to help you. They can usually be prescribed by your GP or cancer specialist.

Medicines

Tablets of sildenafil (Viagra®) help to produce an erection by increasing and restricting the blood supply in the penis. They are usually taken an hour before lovemaking. They can't be taken by men who take nitrate-based medicines for heart problems.

Vardenafil (Levitra®) is a similar tablet that can be taken 25-60 minutes before sex. Tadalafil (Cialis®) is another tablet that can be prescribed and may be taken up to 24 hours before lovemaking. It should not be taken by people who are taking certain heart medicines.

Pellets and injections

Pellets of alprostadil (MUSE®) can be inserted into the tip of the urethra. The pellet melts into the surrounding area and, after some rubbing to distribute it into the nearby tissues, produces an erection. Some men find that the pellet is uncomfortable to begin with.

Alprostadil (Caverject®) or Viridial® can be injected directly into the penis (using a small needle) to cause an erection. At first you may need to experiment to get the dose right.

Pumps and other devices

Vacuum pumps can also be used to produce an erection. The pump is a simple device with a hollow tube that you put your penis into. The pump has a handle which draws blood into the penis by creating a vacuum. The blood then gets caught in the penis by a rubber ring placed around the base. The ring allows you to make love without losing the erection. Once you have finished making love, the ring is taken off and the blood flows normally again.

The advantage of a vacuum pump is that it doesn't involve inserting anything into the penis, but it does need a bit of practice. It's particularly helpful for people who are not able to take other medicines.

Penile implants are sometimes used after other methods have been tried. It means having a flexible rod or a thin inflatable cylinder inserted into your penis during an operation. Your doctor can discuss penile implants with you.

Women

In some women, the vagina may have been shortened or narrowed during the operation. This can make sex difficult or uncomfortable at first. One of the best ways of overcoming this problem is to start having sex regularly and gently, as soon as you feel ready. This will gradually stretch the vagina, making it more supple, and will make sex easier and more enjoyable. If you don't have a regular sexual partner, you can use a vaginal dilator. Your nurse or doctor can show you these, and explain how to use them.

Some women find that they have different sensations during sex. It may be more difficult to have an orgasm. The womb is usually removed during a cystectomy and this may make a woman feel that she has lost a part of her female identity.

Talking about sex

You may find it difficult or embarrassing to talk about sexual problems. Most doctors are very understanding and can refer you to a specialist in sexual problems, or a trained counsellor for advice and support. These specialists can give emotional support and advice on how to cope with sexual difficulties. If you have a partner, it may be helpful for them to see the specialist with you.

Sex is safe

One common fear is that cancer can be passed on to your partner during sex. You can't catch cancer by having sex. It is perfectly safe for you and your partner to have sex as soon as you feel ready.

Our booklet on sexuality and cancer may be useful.

Follow-up after treatment for bladder cancer

After your treatment is completed, you'll have regular check-ups and possibly scans or x-rays. If you have had a partial cystectomy or radiotherapy you will have regular cystoscopies. These will usually be done every 3-6 months at first and will continue for several years.

Many people find that they get very anxious before appointments. This is natural and it may help to get support from family, friends or a support organisation during this time.

If you have any problems, or notice any new symptoms in between these times, let your doctor know as soon as possible.

Our booklet on adjusting to life after cancer gives useful advice on how to keep healthy and adjust to life after treatment.