Coping with penile cancer

Coping with penile cancer can be difficult. You may find that you have many different feelings. There are things you can do and specialists who can help you to cope with your diagnosis. 

Your feelings

You are likely to have a range of emotions that change very quickly. You might feel upset, frightened and confused. One day you might feel positive and able to cope but the next day feel the exact opposite. This is natural.

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. Changes can affect:

• your self esteem
• the way you relate to others, especially close family and friends
• your sex life, if you're in a sexual relationship

You might have to cope with feeling very tired and lethargic, especially after treatment.

Counselling can help you to cope with the difficulties you’ll face. It can help to reduce your stress and improve your quality of life.

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 sad 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 nurse specialists 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

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.

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

Try to be open with your partner. It might help if you both share how you feel about your cancer. Some men feel that they are no longer attractive after their penile surgery. This may cause problems with sex and intimacy. Let your partner know about these feelings.

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

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

Who can help?

Specialist nurses can help if you’re finding it difficult to cope or if you have any problems. They can get you the help you need. They can also give you information.

Support organisations such as Orchid - Fighting Male Cancer provide advice, information and help people to share their experience of cancer.  

Support groups such as Relate offer counselling and psychosexual therapy to help with relationship problems.

Physical problems

Penile cancer and its treatments are likely to cause physical changes in your body. These might affect the way you feel about yourself.

Men with penile cancer worry how physical changes to their body will affect their self image, how they will cope with daily things like passing urine, and how it will affect intimate relationships and their sex life.

Changes such as weight and hair loss can affect your self esteem and the way you relate to other people. Your dietitian can help you maintain your weight and your nurse can help you look at ways to cope with hair loss.

Tiredness and feeling lethargic a lot of the time is common during treatment and for some months afterwards. Resting but also doing some gentle physical activity can help.

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.

Coping practically

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

• money matters
• financial support, such as benefits, sick pay and grants
• work issues
• 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 hospital cancer departments have a social worker available for patients.

Support at home for you and your family

You might need some care and support at home due to penile cancer, its treatment or when you have advanced penile cancer. A lot of practical and emotional support is available to you.

GP

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.

Community or district nurse

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 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 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 nurses

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.

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.