Life After Cancer: A Guide For Cancer Survivors

Life after cancer
A guide for cancer survivors
Life after cancer Cancer Council Victoria 2010. Life after cancer: a guide for cancer survivors. Melbourne: Cancer Council Victoria. First published April 2007 This edition January 2010 This booklet is available online visit www.cancervic.org.au Interpreting service: Deaf or hearing or speech impaired If you use text-based communication, call the Cancer Council Helpline (13 11 20) through the National Relay Service (NRS) 13 3677. If you can hear and still use your voice, but have a speech impairment, call the Cancer Council Helpline through NRS 1300 555 727. Acknowledgments The Cancer Council thanks everyone who contributed to the development of this booklet. We especially thank the writer, Annie Angle. This booklet was developed with the Peter MacCallum Cancer Centre. Quotes are from the Peter Mac DVD Just take it day to day: a guide to surviving life after cancer and are reproduced with permission. The DVD was developed with funding from the Peter MacCallum Cancer Foundation. Thank you to Cancer Council NSW for permission to publish its information about cognitive problems. Generous Victorians who fundraise to fight cancer make many Cancer Council services, including the publication of this booklet, possible. For information on how you can help, visit www.cancervic.org.au or call 1300 65 65 85. AL932
Introduction
This booklet is for people who have finished their cancer treatment. It is about the feelings and challenges that you may face now that your treatment is over and you try to rebuild your life. We hope that it will give you the information you need to help you do this.
If you are still having treatment or your doctor has told you that
your cancer has advanced (cannot be cured), then this booklet may not be very helpful. People whose cancer has advanced may like to contact the Cancer Council for our booklet about when cancer wont go away. Family and friends may also like to read our booklet for carers of people with advanced cancer. Visit www.cancervic.org.au or telephone 13 11 20.
Many people whose cancer has been treated and controlled now live for many years after their cancer diagnosis. This calls for more attention to be given to caring for and understanding cancer survivors needs. This is why we have written this booklet. Your family and friends may also find it useful to read this booklet. It can help them to understand that although your treatment is over, you could still face difficult times. Their love and support will help you cope. We encourage family and friends to also say when they are finding things hard. If you would like to talk to someone about your concerns or receive other information, call the Cancer Council Helpline on 13 11 20. The helpline nurses are qualified, experienced cancer nurses who are trained to listen and provide information and support. Refer also to the section on support services and resources. The words in bold are explained in the list at the back (glossary).
Are you reading this for someone who does not understand
English? Tell them about the Multilingual Cancer Information Line. See the inside back cover for details.
a guide for cancer survivors
Contents
What does being a cancer survivor mean? Coping with your feelings after treatment finishes Common feelings and questions Taking time to understand and accept your feelings Finding ways to accept your changed feelings Reactions and needs of those close to you When people who are close to you dont understand Coping with your childrens needs Will my children inherit my cancer? Returning to a normal life Difficulties of returning to a new normal Doing things in your own time Tips on how to cope with getting your life back Follow-up care Why do I need to have regular check-ups? What happens during check-ups? How often should I have check-ups? Who will manage my long-term side effects? The first check-up Coping with anxiety before your check-ups Finding out more Is follow-up always necessary?
5 6 6 9 0 12 3 4 16 6 8 8 20 3 3 5 6 7
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Fear of your cancer coming back What symptoms should I watch out for? How likely is it that my cancer will come back? Survival statistics Why do doctors use five-year and 0-year survival rates? How accurate are the statistics? Fear of getting a different cancer How can I check myself for signs of a new cancer? Staying healthy after your treatment Dont smoke Protect yourself in the sun (be SunSmart) Eat a healthy diet Be active Long-term side effects from cancer treatment Fatigue Pain Changes in the way you look and feel about yourself Cognitive problems (chemo brain) Your sexuality and sex life Menopausal symptoms (women) Effects of hormone treatment (men) Feeling low or depressed Fertility problems Other problems About using complementary therapies
28 9 30 3 3 3 3 33 35 36 36 38 39 40 4 45 48 49 5 54 58 58 6 6 6
Dealing with practical issues Insurance, superannuation and loans Working after your treatment is over What if my previous employer has treated me unfairly? Possible challenges you may face if you do go back to work What if I can no longer work? Support with childcare and home duties Questions for your doctor Support services and resources Support services Websites Glossary: what does that word mean? Index Your comments
64 64 65 66 66 67 67 69 71 7 75 77 80 81
life after cancer
What does being a cancer survivor mean?
Being a cancer survivor means different things to different people. Some people use it to mean anyone with cancer: for example, someone newly diagnosed or someone having treatment. Others use it to refer to people who are alive many years after their cancer treatment. In this booklet we use the term cancer survivor to mean anyone who has finished their cancer treatment. Your doctor has told you that your treatment has been successful. You are free from any signs of cancer. Doctors call this being in remission, hopefully cured. You may think that the term cancer survivor sounds strange. But for many people it is a strong and positive way of explaining their situation. Using it helps them to cope with accepting their life after their illness. However you feel about this term, we hope that you will read this booklet. Our aim is to give you as much support and information as we can about coping with life after cancer treatment.
I think being a cancer survivor is almost a badge of honour. (Mark)
Coping with your feelings after treatment finishes
During your cancer treatment it may have been hard to imagine that it would come to an end. Maybe you were too scared to believe it would end, or too anxious to think that your treatment would be successful. You and your family may have focused on just getting through each day: getting to hospital appointments on time, having tests and dealing with side effects of treatment. You may have coped with many emotions and changes in your life and not thought much about life after treatment.
Common feelings and questions

You probably feel your life has been turned upside-down. You may think that you should be able to just pick up where you left off before your cancer diagnosis. You may have thought that now would be the time to return to a normal life, feel happy and positive about your future, or feel relieved you no longer have regular hospital visits. For many people who finish their cancer treatment, it isnt that simple. You may no longer feel sick because of your cancer but you
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might not be feeling that great either. Knowing what to expect after treatment can help you and your family cope with the future and any changes to be made.
Every cancer sufferer needs to go through an extraordinary process of re-adjustment after treatment. (Neil)
Most people go through a mixture of good and bad feelings after their treatment is over. Perhaps you feel relief and happiness that you have made it this far and your treatment seems to have been successful. But it isnt uncommon to feel frightened and lost, especially during the first few months. You no longer have regular attention and support from your nurses and doctors. Even if they have told you to call them if you are worried, you might not want to do that. Your family and friends may not visit or call you as much. You may get the feeling that the people around you are assuming that you are doing okay. Many survivors say that they can feel very lonely and angry about this. But, at the same time, you may think that you should be able to cope, now your cancer has gone. It can become confusing.
As soon as the treatment finished, that was more of a shock. All of a sudden youre on your own. Having spoken to quite a few other people, they felt the same. Not that people have left you: I could call on anyone, I could call on the hospital, I could call on my doctors but it wasnt the same, there wasnt active treatment going on. (Patricia)
After completing treatment, it is normal to have concerns about your future and how you will cope. Like many cancer survivors, you may feel:
Isolated, alone and abandoned: where have all the nurses and
doctors gone? Who can you talk to now and who will answer all your questions?
Unsure about relationships with your family and friends: they may Uncertain, not daring to believe that your treatment really has
lack understanding and may be expecting too much from you. worked: is the cancer really gone? How can you be sure? Will the cancer come back? In limbo: unsure how to start your life again or even if it is what you want right now. Nothing feels secure or stable. Anxious and frightened about how you will be followed up: what tests will you need; how often will you have a check-up? Worried about possible long-term side effects and how these may affect your work, social life, relationships and hobbies. Lacking in confidence: how will you cope with the changes in your body image and sexuality that your cancer and its treatment may have caused? Angry and frustrated because you dont feel that you can plan ahead any more: what if your cancer comes back before that holiday comes around or your child gets married? Concern about side effects of treatment that you experienced a long time ago (late effects). Different about your body and health: many people say their selfconfidence gets shaken up a lot. They also dont trust their body as much as they used to now that it has let them down.
[Following treatment] I felt very scared in a lot of ways, very nervous about what things held for me, because youre seeing somebody every day, day after day, and then suddenly its goodbye, well see you in three months. So youre left there on your own to cope with things. (Rosemary)
life after cancer
Taking time to understand and accept your feelings

Some people adjust fairly quickly after their treatment finishes. But for many people their problems and fears wont just go away. You may need a lot of love and support: maybe even more than you did during your treatment. Be kind to yourself during this time. Dont expect to feel great about everything. Go slowly so you can come to terms with all you have been through and what lies ahead. You may have possible long-term side effects that you will have to deal with as well as finding the confidence to have a social life again. You may feel sad that you cant do some things that you used to enjoy. You may no longer feel certain about your health and the future.
Survival keeps on going; every day brings a new challenge. I think its been both a curse and a blessing, when I look back on it. (Neil)
It can be exhausting to try to act as if you are fine. You may have days when you feel awful: very down, sad and alone. Other days you may feel angry, fearful or frustrated. This is okay. Try to listen to your feelings and accept them as they happen. It is better not to ignore negative thoughts but try to work through them. Most cancer survivors say that they do feel better with time. But it usually doesnt happen overnight so dont expect too much from yourself too soon. Also, dont be surprised if, some time after your treatment (sometimes a few years), you have periods of feeling down. This is not uncommon. Friends and colleagues may keep advising you to think positively. This is very difficult when you are dealing with what has happened and how your life has changed. There is no scientific evidence that being positive has any effect on surviving cancer (although many survivors say that being positive helped them to cope through their illness).
If family and friends think that you should be doing more and feeling happier, let them know that you still have a lot to deal with. You may get sick of others telling you that you look so well. Its normal to feel like this. You need those close to you to try to understand your fears and be there to listen and support you. Remember: go at your own pace, not theirs. If you feel very low for long periods of time, see your doctor. You may have depression. This is different from the sadness and low moods that many cancer survivors have soon after their treatment. There is more about depression and its symptoms on page 58. Similarly if you are experiencing ongoing health issues, it is important to speak to your doctor. There is more about long-term side effects page 40.
Finding ways to accept your changed feelings

You may have negative feelings for months after your treatment. Remember, there is no right way to feel. Each person has different concerns and long-term worries. Feeling negative a lot of the time takes up a lot of energy. You and those close to you can get worn down by this. Family and friends may not be as understanding as you want. They may try to tell you how you should be feeling. This can put a lot of strain on your close relationships. Try not to see it as a weakness if you are having trouble coping on your own. Lean on those close to you. Dont be afraid to ask for help. See this as a positive move towards your recovery. Support from others will not only give you comfort but also practical ideas on how to cope. If you dont feel like talking to those close to you about your feelings, a trained counsellor may help. See the section on Support services and resources.
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People did shy away from it [the cancer] a bit, and there was an element of having to manage those relationships in a sense that you had to bring it to the table and make people feel comfortable. (Jason)
As well as talking to others about how you feel, there are other things that you can do. For example, try:
being active and getting daily exercise to help improve your mood eating well and staying healthy avoiding or limiting alcohol and other drugs: the after-effects trying some form of relaxation, such as meditation, visualisation, reading about other peoples journeys: this helps some people writing about your feelings in a journal.
understand their feelings better and not feel so alone yoga, massage or deep breathing often just make you feel worse

Reactions and needs of those close to you
After your cancer treatment is over, the people around you are also likely to go through strong emotions. What has happened to you might make them question things about their own life and future. Like you, their priorities may change: they may want to focus more on enjoying the important things in life, such as their family and friends. This can be very positive. Your relationships may be stronger and more loving because of it. But you may also find that some of their reactions upset and frustrate you.
While I was filled with confidence, [my parents] were filled with dread when I came out of it. (Mark)
When people who are close to you dont understand

Many survivors say that people very close to them dont really understand how much help they still need. They might expect you to be back to normal much faster than you feel you can be. It can be hard to let them know this. Cancer survivors often feel guilty about what

life after cancer
their family and friends have been through because of the illness. But dont let this override your needs. Family and close friends may not be realistic about how you feel. Your recovery may take a lot longer than your treatment did. This may come as a shock to both you and your family. Everyone wants things to be easier: less stressful and more enjoyable. But this isnt always possible, and this can be disappointing. For life to move forward, it is important that everyone finds a way to cope. As you build your new life with those close to you, things are likely to become easier. This can take time and patience but many survivors say their new life has more meaning and is often more fulfilling.
There were some friends who I think backed off and I was disappointed ... some of my friendships that I thought I really valued didnt turn out to be like that ... Its not necessarily that they dont care, its just that possibly they dont know what to do or to say. (Rosemary)
Let your family and friends know that you understand it is hard for them as well. Tell them how much you value all they have already done to help you. But you still need their support. Most people want to help all they can but sometimes they just dont know the best way to do this. They might think that ignoring what has happened and trying to move on quickly is best for everyone. You might need to point out that you still feel very tired or scared. You cant just get on with it and move on as quickly as they might want you to. If you can work together and share your worries then it will be easier for everyone.
Coping with your childrens needs

If you have children, you may not want to let them know that you still dont feel great, even though your treatment is over. They may not have seen much of you during treatment. They may have had fears that you
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may die during your treatment. For some children these issues may have been very hard and they will be excited about having you back in their life. Depending on their age there will be different needs and issues to deal with. But whatever their age, be as open and as honest as possible. This will make them feel safe. Most kids will understand that you still need some time to get over your treatment. Try to involve them in your recovery. With younger children, if you are feeling too tired to play with them, suggest that they lie next to you and read a book while you take a nap. Or curl up together and chat about things that you like to do together. This isnt so easy with the under-fours, but maybe a friend or relative could come over and help you play with them. Two pairs of hands can make it less tiring. With older children you may be able to ask them to help you cook, clean and shop, or read to you while you lie down. Involving your children, where you can, not only makes them feel that you want and need them near you, but also allows them to spend more time with you. This is all most kids want to be close to their parents. Pushing them away or trying to hide your feelings and needs only confuses them and makes them feel lost and lonely. Kids can sometimes be the best medicine. They can make you laugh and give you reasons to want to cope.
Will my children inherit my cancer?

This can cause a great deal of concern for many cancer survivors. One in three Australians will develop cancer in their lifetime. It is therefore not uncommon for several members of the same family to develop cancer, though in most cases the cancers will be unrelated. However, for a small number of individuals, their family history suggests they may have a faulty gene, which means their chance of developing cancer is much higher than the average population. If you are worried that your cancer may be inherited, speak with your doctor. They can advise
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you about any risk and whether or not your children need regular screening. They will also be able to refer you for genetic counselling and testing.
For more on inherited cancers, visit www.cancervic.org.au and

search for family cancer.
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Returning to a normal life
Some people quickly return to an active and full life after their treatment finishes. But for other people it can be hard. Try not to feel alone if you are struggling. Many cancer survivors have problems getting back to normal day-to-day life after treatment. In fact, many say that you never get back to the normal way you lived before your cancer diagnosis. You find a new way of living and your normal is now different.
You never get back to the normal you knew before you had cancer. Its a series of evolution evolving as a different person. (Julie)
Difficulties of returning to a new normal

How you feel and what you have to cope with will depend on the type of cancer you had. Any long-term side effects from your treatment will also play a big part. As many as 75 out of every 100 cancer survivors (75%) have problems with their health because of their treatment. More than half
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suffer from ongoing pain. And nearly three-quarters have depression at some stage in their illness or after care. Fatigue is also a big problem for many people long after their treatment is over. All these symptoms can make day-to-day living difficult. People around you may not even realise that you are suffering, which can make it even harder to cope with. Other, more visible side effects can make returning to work, sport and a social life very hard. For example, surgery may mean that you can no longer do certain things. Scars can affect your body image and ability to talk or eat. Treatments may have affected your sex life, your ability to work and socialise. This can be very distressing. Other people may not understand why you might be finding things tough. They may even say things like, Now your treatment is over, you must be looking forward to getting back into your life and returning to normal. Your first reactions might be, Yep, for sure, of course I am. But you may soon realise that returning to normal isnt that easy. What does normal mean anyway? How can you be expected to pick up where you left off before you were diagnosed with cancer? Others may expect you to, but you might not feel able or even want to go back to how life was before your treatment. Many survivors say that they feel like a different person, having been through a life-changing experience. You may have different values, interests and attitudes about life now. For people who experienced cancer treatment many years ago, ongoing side effects may continue to cause physical and emotional issues. There is more about long-term side effects page 40.
You come out and everybody says, Youre okay now, and you can go back to your life, but youre completely different from how you went in. Physically, emotionally, youre a wreck; you just dont feel like the same person. (Georgina)
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Doing things in your own time

Give yourself time to adjust after you finish your treatment. This is most important if there have been major changes in the way you look, feel or how you can move around or communicate. Take things at your own pace. You dont need to sort out everything at once. It can take time to find the right way to deal with each problem. Try not to be led by what others think you should be doing. There will come a time when you might need to push yourself a bit: to do everyday things again like shopping and seeing friends, or to go back to work. To begin with, this may feel very scary. Staying at home may seem much easier. But in the long term, most people say that getting out and about does make them feel better.
Tips on how to cope with getting your life back

Everyone deals in their own way with life after treatment. Some people have a lot of love and support from family and friends. Others dont. Some nurses and doctors talk and advise about coping after treatment while others dont. Life is likely to be different than it was before you had cancer. These tips may help you to cope.
Make sure you have contact names and numbers of who to call if Gentle exercise can help how you feel, improve mood and reduce Try to take each day as it comes and expect a few bad ones. Do things at your own pace. Dont feel bad about taking a nap when you need to. Your mind
fatigue. you have any questions about your treatment side effects.
and body still need a lot of rest to recover from all you have been through. Be prepared for mixed reactions from those you meet.
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If you are feeling uncertain about going out for the first time, go If people dont know how to react to you, try not to get upset.
with someone you love and trust. Remember, most people dont mean to hurt you. Dont feel that you have to explain too much to people if you dont want to. People are often just being caring or curious. Tell people as much as you want to. If you are going back to work, ask your boss if you can do a few hours a week to begin with and build it up slowly. Until you are ready, dont be afraid to get extra help doing housework, school runs and shopping. Most family and friends will want to help out. Some people say that it helps a lot to talk to those close to you about feelings and worries. It may help to speak with another cancer survivor. Ask your doctor or contact a local support group about putting you in touch with someone. Or call the Cancer Council Helpline on 13 11 20 and ask for details about Cancer Connect. This is a telephone peer support service where people affected by cancer can connect with others who have also been affected by cancer. Discuss any ongoing physical changes you may be experiencing with your doctor.
If things get too hard and you feel very low for longer than a couple of weeks, see your doctor and discuss ways of helping you cope. Some people may find this hard to do or think of it as a weakness. Try not to think in this way. We all need help now and then. And it may be that you feel better for just having told someone about your feelings.
Remember: you dont have to sort everything out at once.
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Follow-up care
Better treatments mean that more people are living much longer after cancer treatment. For example, 87 out of every 100 (87%) women with breast cancer will be alive five years after their treatment. Twenty years ago, only 74 out of every 100 women (74%) with breast cancer were alive five years after their treatment. Doctors are aware that many cancer survivors need a lot of support and long-term care. But they are still researching the best way to provide this. Research is needed to find out:
how often and why some survivors have late effects from ways of controlling and treating long-term side effects and side ways to improve the quality of life of cancer survivors and those
close to them. When your treatment finished, your doctor probably told you that you would need regular check-ups. You may need check-ups for several years, depending on the type of cancer you had. You may have mixed feelings about this. Follow-up appointments may make you feel anxious, especially in the couple of weeks before they are due. You may keep having thoughts about your cancer coming effects that occur after treatment. treatment
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back, or that your doctor will find a different (new) cancer. This can be very frightening. There is more about coping with the fear of cancer coming back on page 28. It is important that you get the follow-up care that you need. After treatment finishes, many cancer survivors feel isolated or abandoned. You may not know what is going on or even who to contact if you need help. At your first check-up, ask your doctor what to expect from your follow-up care. Ask who you should contact if you are worried. Get phone numbers and times when it is best to contact them. See page 69 for a list of questions that you may find useful to ask your doctor. Some research suggests that there is a difference between what cancer survivors and doctors expect from follow-up meetings. Your doctor may ask you about things that are not worrying you at all, but not ask you about things that are concerning you. Feel free to talk with your doctor about your concerns.
Why do I need to have regular checkups?

You may not understand what check-ups mean or why you need them. Everyone is different and follow-up care will vary depending on:
the type of cancer you had the type of treatment you had any side effects you may have.
Regular check-ups allow your doctor to keep an eye on your health and well-being. They will also be looking for any signs that your cancer might have come back. Your doctor will use the check-ups to:
see how you are recovering check how you are feeling and coping with rebuilding your life ask if you have any concerns

keep an eye on any long-term side effects and help to treat or check any new symptoms.
Symptoms can be caused by other illnesses, a lot of them much less serious than cancer. So try not to worry too much that every symptom you have means your cancer is coming back. This isnt always easy to do but in time most people do become less worried. Always check with your doctor if your symptoms persist. control them
What happens during check-ups?

Your doctor will examine you and ask you how you have been feeling. Dont be afraid to tell them the truth. For example, if you feel very low in mood, let them know. Tell them about any symptoms that are bothering you. You may need to have a blood test, an X-ray or scan.
How often should I have check-ups?

Most people will see their doctor every three to four months for two to three years after their treatment ends. As time goes on, and assuming that you stay well, check-ups will become less frequent. After a couple of years you may have six-monthly or yearly checks until you reach five or 10 years after your original diagnosis. It depends on the type of cancer and treatment that you had. There are national guidelines for follow-up care for a few types of cancers (for example, breast and bowel cancer). Call the Cancer Council Helpline on 13 11 20 for details on these guidelines.
Remember: if you are worried or notice any new symptoms

between appointments, let your doctor know. Dont worry and wait until the next time you are due to see your doctor.

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Who will manage my long-term side effects?

Many cancer treatments dont appear to cause long-term problems. But some do. If you have side effects that will need treatment or care, you need to discuss this with your doctor. Ask whether you should see your specialist or your GP. You may need help from another health care worker such as a physiotherapist, dietitian or specialist nurse. Your specialist may suggest that your GP coordinate your care, but your specialist will also see you if needed. Some people have treatment-related problems a few years down the track. For example, if you have early menopause because your ovaries were removed as part of your cancer treatment, you could be at risk of osteoporosis, which thins your bones. Chemotherapy and radiotherapy sometimes cause longer-term side effects. If you have any concerns, ask your doctor for advice.
The first check-up

At your first check-up you are likely to feel quite nervous. It is a good idea to bring someone with you, to help you remember what your doctor says and to prompt you with the questions that you want to ask. Write your questions down before you go. This way you wont forget or feel lost for words. Tell your doctor exactly how you feel. If you are feeling very tired or down, let them know. You dont have to try and be brave. Your doctor needs to be aware of these things so that they can best plan your care. If you cant understand what your doctor is saying, ask them to stop and explain things in a simpler way. Dont leave the check-up wondering what they meant. You have the right to find out the things that you want to know. If time is a problem, ask for a longer appointment next time.
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If you continue to feel unhappy with the answers you are getting, let your doctor know. Sometimes it just takes a bit of boldness to get doctors to speak in language that all of us understand. You may find it helpful to ask your doctor some of these questions.
What can I do to reduce the chance of my cancer coming back? Why do I need check-ups? What happens during check-ups? How often will I need to come for check-ups? Are check-ups effective: do they always show up problems if there are any? What symptoms should I be looking out for? What tests will I have if a check-up shows signs that the cancer may have come back? How long will it be before I can get on with living my life again without always thinking about my cancer? What should I do if I have any new symptoms between check-ups? How long will I have to take the drugs that I am on? Are there any side effects from the drugs that I am taking? Who will manage any long-term side effects such as pain and fatigue? What other long-term side effects might I have? Is there any treatment for the side effects that I may have? Where can I go to find out more about my follow-up care? Will my GP be involved in my follow-up care? What can I do to make it easier going back to work and getting back into my social life again?
If you see doctors other than your cancer specialist, tell them about your cancer and its treatment. Ask your cancer specialist(s) to send the other doctors information about your cancer and the treatments you have had. It may affect their decisions about the health problems you are seeing them about.
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You need to also tell other people caring for you, such as dentists and dietitians and complementary therapists such as massage therapists and hypnotherapists.
Coping with anxiety before your checkups

Many cancer survivors say that they begin to feel very anxious before their routine check-ups. Sleeping problems, having bad dreams and feeling more general aches and pains than usual are not uncommon before a check-up. Some people say they suffer from mood swings and poor appetite.
You do get nervous and you tell yourself in your mind its only a check-up and theyre not doing it for any reason other than its just a check-up but it becomes this mountain. And I used to organise ... so that my scans are on the Monday and I see the doctor on the Wednesday, because I cant handle having to wait for the results any longer. (Georgina)
There are many reasons why you may feel anxious. The main one for most people is the fear that they will be told their cancer has come back. You may also feel anxious because going back to the hospital brings back memories of your treatment, tests and side effects. Just when your life is getting back to normal and you feel in control again, a check-up can make you fearful. It forces you to think about the chance of your cancer coming back and your life being turned upside-down again. Find ways to try to cope with your worries before each check-up. Once you have had a few check-ups and all is okay, you may be less concerned. These tips may also help.
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Take a close friend or relative with you to your check-up: dont
try to deal with it alone. You will be surprised how much it helps to share your fears. And people close to you want to feel they are helping. Make the day something to look forward to. Plan to do something special after your check-up. Going out for a meal or meeting a friend can add a positive touch to the day. As hard as it may be, try to see your check-ups as positive. Regular check-ups increase your chance of any problems being picked up early, when they are easier to treat.
Most survivors say that it is very hard not to think about their next check-up and wonder what the outcome will be. Should you prepare yourself for the worst or think that all will be well? You are likely to imagine all sorts of outcomes. Everyone is different and will deal with things in their own way. Try to stay calm.
Finding out more

You may want to know more about check-ups, the after-effects and the chance of your cancer coming back. You may also be interested in keeping up to date with any new and effective treatments for the type of cancer you had. Your doctor will usually be happy to discuss this at your check-ups. We list services that can help at the end of this booklet. You can get in touch with them in your own time and as your questions pop up. They can also put you in touch with Cancer Support Groups, where you may talk to others who have also been through cancer treatment.
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Is follow-up always necessary?

For most types of cancer, doctors follow up their patients for several years. Research is underway to try to find out whether follow-up improves survival, should a cancer recur. Doctors need to know:
whether survival is improved when a recurrent cancer is found at or whether survival is the same if a recurrent cancer is treated
when symptoms occur, without regular follow-up. Doctors need to find out the best way to follow up cancer survivors. People often feel reassured by having regular check-ups. Remember that follow-up is not just to detect cancer recurrence. follow-up, before symptoms occur
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Fear of your cancer coming back
Many cancer survivors feel anxious and frightened about the cancer coming back, especially in the first year after treatment. For some people the fear is so strong that day-to-day life is a big struggle. They dont find any joy in life or believe that they ever will again. Living with this fear has been described as a shadow: no matter which way you turn, it is always there.
The fear is always there. It never goes away completely. (Maria)
Many survivors say that with time their fears lessen. But they also say that no matter how much time passes, it is hard not to be reminded at certain times such as:
special occasions: birthdays, Christmas and anniversaries the date you were first diagnosed and when your treatment
finished just before and during check-ups if you hear about anyone else getting cancer
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life after cancer
having symptoms that are similar to those you had when you were if someone you know dies from cancer or any other type of illness passing by the hospital where you had your treatment or having to reading or hearing about cancer in the media, new treatments or
celebrities with cancer.
Cancer will always leave a scar. The scars are internal, theyre emotional, theyre intellectual, and they are physical. The physical scars are probably the least of the worries, but its the emotional scars that people go through in terms of their journey. (Neil)
first diagnosed with cancer
visit someone you know in the same hospital
What symptoms should I watch out for?

Your cancer doctor is the best person to speak with about what symptoms you should look out for and report. They will also be able to give you some idea about the risk of your cancer coming back. This is only if you want to know. Not everyone is ready to hear these answers as soon as their treatment finishes. You dont ever need to ask if you dont want to. Do what feels right for you. At first you may think that every ache, pain, runny nose or feeling of sickness means that your cancer has come back. You may worry so much that you find yourself at your GPs office more than usual. Try to remember that every symptom doesnt mean that your cancer has come back. Most survivors say that over time, their confidence builds up and they dont think as much about their cancer coming back. If you do have a symptom, try not to worry too much. If the symptom doesnt go away within a week, make an appointment to see your GP or specialist. They will be able to reassure you and decide whether or not you need to have any further tests.
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Remember: a lot of symptoms wont have anything to do with

your cancer. You may just have a headache, stomach upset or feel tired and run down from the past few months of your treatment.
You may also wish to read the section titled Long-term side effects from cancer treatment on page 40.
How likely is it that my cancer will come back?

You may also wonder how likely it is that your cancer will come back, or how long most people who have had your type of cancer live for. Your cancer doctor is the best person to talk with about your case. But they still wont be able to tell you for sure what will happen. You may find this hard to accept and want someone to be able to give you definite answers. This is natural. How well your body deals with your cancer and its treatment wont be the same for everyone. We are all unique: for example, the same type of cancer can grow at different rates in different people. Your doctor will be able to give you some answers based on research and from their experience with other patients, but there is always going to be some uncertainty. Try not to let it get you down. Many cancer survivors say that with time, you will find your own way of coping with the chance of cancer coming back.
I live with the fear of recurrence and the stigma of cancer. Not only that, I feel I have grown old before I should have and that I am still grappling with changes to my life roles. There is still a stigma around cancer you know ... and that invades every aspect of your life ... yet here I am, a survivor. (Helen)
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life after cancer
Survival statistics
You may hear your doctor talk about five-year or 10-year survival figures for your type of cancer. These statistics can seem confusing and concerning. Five-year survival and 10-year survival refers to the percentage of people who are living five or 10 years after their diagnosis with a certain type of cancer. For example, about 83 out of every 100 men (83%) diagnosed with prostate cancer will be alive five years after they are diagnosed. This doesnt mean that all these men are cured, and it also does not mean that men live for only five years after prostate cancer treatment. Some patients may be cured but for others their cancer will come back (recur) in this five-year period. They may have another lot of treatment and live for many more years. For some patients the cancer will come back after the five years. As a general rule, the more time that goes by, the less likely it is that your cancer will recur. For example, you have a much lower chance of your cancer coming back after five years than you do in the first two years. And the more years that you go on without your cancer coming back, the higher your chance of a complete cure.
Why do doctors use five-year and 10-year survival rates?

Depending on the type of cancer, there may be only a small chance that it will come back after five or 10 years. But most doctors are wary of saying that you are cured because they know that there is still a small chance that the cancer may come back. Most of the research studies that follow patients up after their cancer treatment go for five or 10 years, so these are the statistics your doctor will use and may quote to you.
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How accurate are the statistics?

Five-year and 10-year cancer survival rates are general. They often include everyone with that type of cancer at all stages of the disease. People treated effectively at an early stage can usually count on their survival being better than the average five-year or 10-year rate, while people treated while their cancer is at a later stage may have a slightly poorer outlook.
Remember: no statistics can tell you exactly what will happen

to you. You and your cancer are unique.
Statistics take many years to collect and therefore are often slightly out of date. For example, if you have cancer diagnosed in 2010, the five-year survival rate may be from people diagnosed in 2004. With cancer treatments improving rapidly, your outcome may be better than it would have been if your cancer was diagnosed in 2004. Statistics such as five-year survival rates are likely to improve for many types of cancers in the next 20 years. Feel free to ask your doctor about the five-year survival rates for your type of cancer. Not everyone wants to know or feels ready to find out straight after finishing their treatment. For some people it is only something else to worry about. So only ask if it is something you will feel okay knowing. You may want to wait a few months before asking or you may never want to ask. What feels right for you is right.
Fear of getting a different cancer

As well as worrying about your cancer coming back, you may also worry about getting a different cancer. Most people who get cancer only get one primary type. It is quite rare to develop another, different cancer. But, like most things in life, it is possible. Your risk may be higher if:
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life after cancer
You were born with genes that increase your risk of cancer this You have been exposed to cancer-causing agents such as tobacco
is rare and affects less than one in 20 (5%) people. smoke. Your prior cancer treatment has increased your risk. For example, radiotherapy can sometimes increase your risk of getting a different cancer later in life. This is especially true if you had treatment for cancer in childhood.
If you are worried about getting a different type of cancer, talk to your doctor. They should be able to tell you about your own risk, if you have any.
How can I check myself for signs of a new cancer?

Find out about the national screening programs for breast, cervical and bowel cancer. These regular checks are good health habits. If you are at high risk of some cancers, your doctor or specialist will be able to advise whether you need screening or regular tests or checks. Look at the Cancer Council website (www.cancervic.org.au) for more about cancer screening. You can also talk to a cancer nurse at the Cancer Council Helpline on 13 11 20. While it is important to be body aware and keep a check on any symptoms you may have, it helps not to worry too much either. For example, you may wish to get into the habit of checking your skin, breasts or testicles every month for any changes. But aim to strike that healthy balance of checking yourself regularly and not worrying too much in between.
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Below is a checklist of possible signs of cancer. You should contact your doctor if you have:
a lump anywhere in your body that wont go away changes to a mole on your skin a cough or hoarseness that wont go away a change in bowel habits: diarrhoea or constipation for more than six weeks any abnormal bleeding (in bowel motions, in urine or if you cough up blood) unexplained weight loss.
symptoms, see your doctor.
Remember: this is a guide. If you have concerns about any
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life after cancer
Staying healthy after your treatment
Many cancer survivors decide that they want to have a healthier lifestyle after their cancer diagnosis and treatment. They look for ways to reduce the chance of their cancer coming back, prevent a new cancer, and be healthier. You may begin to look at eating a healthier diet, doing more exercise and trying to reduce the amount of stress in your life. It is uncertain whether these measures will stop your cancer from coming back but they can certainly make you feel better and can help prevent other problems such as heart disease. Results from large research studies are telling us that there are lifestyle changes you can make to help lower your risk health problems, and possibly lower the risk of cancer coming back. It is estimated that nearly one-third of cancers would not develop if people stopped or didnt start smoking, exercised, ate healthily and were SunSmart.
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Dont smoke
More than 10,000 Australians are diagnosed with a smoking-related cancer each year. Lung cancer is the most common, but smoking is also closely linked to cancer of the bladder, kidney, mouth, stomach and oesophagus. Stopping smoking is not easy but if you want to prevent cancer, then quitting is a great start. Call the Quitline on 13 7848 and ask for a free Quit pack to be mailed to you. A trained Quitline adviser can help you with practical and expert advice. You can also log on to the Quit website www.quit.org.au for helpful advice on quitting. Only you can stop you smoking but lots of support can make it easier.
Protect yourself in the sun (be SunSmart)

Australia has one of the highest rates of skin cancer in the world and two in three Australians will develop some form of skin cancer before they reach the age of 70. Exposure to ultraviolet (UV) radiation from the sun and other sources, such as solariums, increases the risk of skin and eye damage and skin cancer. In particular, overexposure to UV radiation during childhood and adolescence is known to be a major cause of skin cancer. However, any UV radiation exposure that causes your skin to tan adds to your total lifetime dose of UV and increases your skin cancer risk even without burning. Sun protection is needed whenever UV levels reach three and above. In Victoria average UV levels are three and above from the beginning of September to the end of April. Take special care between 10 am and 2 pm (11 am and 3 pm daylight saving time), when UV levels are most intense.
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life after cancer
When the UV Index is three and above:
Slip on sun-protective clothing. Slop on SPF30+, broad spectrum, water resistant sunscreen. Put
it on 20 minutes before you go outdoors and every two hours afterwards. Slap on a hat that protects your face, head, neck and ears. Seek shade. Slide on some sunglasses make sure they meet the Australian Standard.
For the times of the day that sun protection is needed, check the SunSmart UV Alert at www.sunsmart.com.au or the weather section of daily newspapers. While too much UV radiation can cause sunburn, skin and eye damage and skin cancer, too little UV can lead to low vitamin D levels. Vitamin D regulates calcium levels in the blood and it is also necessary for healthy bones, muscles and teeth. From September to April, just a few minutes of sun on the face, arms and hands should be enough for most people to maintain vitamin D levels. From May to August, average UV levels in Victoria are below three, so sun protection isnt needed unless you are in alpine regions or near highly reflective surfaces such as snow or water. During these months, most people should be able to maintain their vitamin D levels with two to three hours of UV exposure to the face, arms and hands or equivalent area of skin across the week. People with naturally very dark skin may need three to six times these exposure levels.
Visit the SunSmart website at www.sunsmart.com.au for more

information.
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Eat a healthy diet

Researchers are now sure that poor diet is linked to several types of cancer, including cancers of the breast, bowel, stomach, lung, oesophagus, bladder, prostate and pancreas. There isnt one type of food that you should avoid. But eating a wide variety of foods and not too much of any one thing is the key. Here are a few tips that may help you choose a healthy, balanced diet.
Eat five or more servings of fruit and vegetables each day. A Dont eat too much red or processed meat: choose fish, poultry or Drink two or more litres of water each day. Eat less fat and more fibre. Choose wholegrain cereal products (such as wholemeal bread and
brown rice) where possible, instead of processed foods like white bread and white rice. If you drink alcohol, drink no more than two standard drinks each day. Try to stay at a healthy weight. vegetarian options for some meals. serving size is about a handful.
For more about eating healthily and reducing your cancer risk, visit www.cancervic.org.au
The National Health and Medical Research Council dietary
guidelines (see www.nhmrc.gov.au) advise about healthy eating for all Australians. The Cancer Councils booklet on nutrition and exercise is also useful. Telephone 13 11 20 or visit www. cancervic.org.au for a free copy.
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life after cancer
Be active
Research has shown that physical activity may help to improve quality of life and increase survival for people who have had some types of cancer. There is good evidence that women with breast cancer and people with bowel cancer can reduce the risk of cancer coming back by increasing exercise levels. Being fit and healthy also helps reduce your risk of other health problems such as obesity, diabetes and heart disease. Studies have also shown that moderate exercise can help to:
improve your mood make you feel better about yourself (boost self-esteem) reduce symptoms of fatigue, sickness and pain.
Dont rush into doing a lot of exercise too soon after you finish your treatment. Your body needs time to recover. Increase your activity over time. Check with your doctor before you begin any exercise program. For more about preventing cancer and reducing your risk, contact the Cancer Council Helpline on 13 11 20.
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Long-term side effects from cancer treatment
After your cancer treatment is over, you may think that you wont have to cope with side effects any more. Unfortunately, this isnt true for everyone.
I had no idea that I would still be feeling tired five months after finishing treatment I didnt know how to make it better and I was scared thats how it would be: that I wouldnt go back to normal, that I would never go back to having energy again. (Georgina)
It can take time to get over the effects of your treatment. Some problems will disappear quite quickly. Others can take weeks, months or even years to go. For some people there may be permanent or late side effects. Late side effects are problems that develop a long time after treatment finishes. If this concerns you, talk to your doctor, who will tell you if you are at risk. The side effects will vary depending on the type and stage of your cancer as well as the type of treatment you had. Some people need to make big changes to their life, such as people who have lost a limb
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life after cancer
or can no longer eat and drink in the same way. Other changes may include sexual problems, incontinence, pain and fatigue and sometimes emotional changes such as anxiety, depression and loss of confidence. Everyone is different. Someone who had the same type of cancer and treatment as you may recover faster. You may have side effects that they didnt. But this doesnt mean that your cancer is more serious or more likely to come back. Your body will cope with the treatment and recover in its own way. Try not to worry too much if it is taking a while to feel right again. The important thing is that you find the right support to help you manage and cope with any side effects that you have. The most common problems that cancer survivors say they have include:
often feeling very tired (fatigued) pain loss of self-esteem and confidence about their body changes in the way their bladder and bowel work coping with menopausal symptoms problems with eating, drinking and weight mouth and teeth problems bone loss problems (osteoporosis) fertility problems swelling in the limbs (lymphoedema) changes in their sexuality and sex life.
Any change in how your body looks, feels or functions can be hard to deal with. Other people may not understand how much these changes can affect your day-to-day living, especially if it is a few months or years after your treatment finished. This can be very isolating and make it even harder to cope with your side effects. In this booklet we briefly discuss some of these problems and offer you ideas on how to cope with them. For more detail, further reading and support contact the Cancer Council Helpline on 13 11 20. Cancer
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nurses will be able to talk to you about your concerns and needs. Please also refer to the Support services and resources section on page 71. You may also wish to join a support group or talk to someone who has been through a similar experience. Many cancer survivors say that this can help a lot. See the Support services and resources section.
Fatigue
Fatigue means feeling very tired and lacking energy to do day-to-day things. Fatigue for cancer survivors can be very different from normal tiredness. It doesnt always go away with rest or sleep. Fatigue during treatment can be caused by the cancer treatment, poor nutrition, pain or having too few red blood cells (anaemia). But doctors are still trying to find out the exact causes and ways of managing fatigue after treatment ends. Fatigue is the most common side effect of cancer treatment. Many cancer survivors say that in the first year after treatment, fatigue is very disruptive. Some people say that it greatly affects their quality of life. Day-to-day tasks such as bathing, cleaning, shopping, eating and cooking can leave you feeling exhausted. Even talking to those close to you can sometimes feel too tiring. Some people may feel they have to give up working because they feel too tired. Fatigue can go on for weeks or months after treatment. Most people will get their energy back between six and 12 months after treatment. But it can take longer, and for some people it gets worse over time and continues for years. For example, people who have had a bone marrow transplant may lack energy for years after they finish treatment. Cancer survivors have described their fatigue as:
overwhelming, unbelievable and frustrating unrelated to how much you do affecting your whole body: every part of you feels tired and worn difficult to describe and hard for others to understand
out; your muscles may even ache
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life after cancer
not helped by rest or sleep exhausting for the mind, body, emotions and spirit like a heaviness in the arms and legs.
Many survivors say that they worry their fatigue is a sign that their cancer has come back or that it never really went away. This can be difficult to cope with. If fatigue continues for long periods of time you may also begin to feel quite down about it. You may lose interest in things that you usually like doing or feel unable to concentrate on one thing for very long. It can affect how you feel about yourself and others, which in the long term may affect your close relationships. You may worry that your friends or family wont believe you or they might think that you are complaining too much if you keep saying how tired you feel. They may not appreciate the long-term effects that fatigue can have on you. But research in this area is growing, and showing just how long fatigue can affect cancer survivors. Doctors are taking more notice of this symptom in survivors and finding more ways to help relieve fatigue. Letting those close to you know will help them to understand why you might be feeling down or lacking motivation. A lot of cancer survivors dont report fatigue to their doctor because they think that nothing can be done about it. However, if you have fatigue, discuss it with your doctor or nurse, as there are things that can help. For example, research has shown that light exercise helps to increase energy levels and your doctor can advise you about this.
Tips on how you can help to relieve your fatigue

You cant always stop your fatigue but you can find ways of managing it. If your fatigue is caused by low red blood cells or the side effects of drugs that you are taking your doctor may be able to treat that cause. But otherwise you may have to learn to take short cuts and get help from others to make sure your fatigue doesnt take over your life.
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Not all of these things will work for everyone but you may be surprised how small changes can help to save your energy.
Set small goals that you can achieve. Plan your day. Dont be afraid to ask for help: ask friends to pick the kids up from Plan ahead. For example, get all your clothes ready before you
school, do the shopping, or come to clean the house once a week. shower, this way you only have to walk to your wardrobe once.
Rest before you get too tired. Try not to rush: leave plenty of time to get to appointments. If possible, sit down to do some household chores like cutting up
the vegetables and ironing. Say no to things that you really dont feel like doing. Try not to feel you have to please others all the time. Get some exercise. This may be the last thing you feel like doing. But research shows that exercise can boost energy levels and make you feel better even if you just walk around the garden or block a few times a week. It all helps. Leave chairs around the house so that you can sit down whenever you feel tired. Sit down when you are talking on the phone. Smoking reduces your energy. If you smoke, talk to your doctor or the Quitline on 13 7848 about stopping. Dont do the shopping during busy times. Write a list of what you want; this saves you thinking on your feet. If you have children, try to play with them sitting or lying down: board games, puzzles and drawing are good ideas. Eat nutritious meals and snacks throughout the day to keep your energy levels up. Try to take some time out to do things that you enjoy. For example, sitting in the garden or listening to some music may help you relax and for a short time take your mind off how tired you feel.
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Call the Cancer Council Helpline on 13 11 20 to be put in touch
with a Cancer Connect volunteer, who can share their story of how they coped. Join a Cancer Support Group. The Cancer Council Helpline can help you find one near you. Its good to talk and hear how people in similar situations have managed. Alternatively you may prefer to be linked to an internet or telephone support group. Visit www.cancervic.org.au or call 13 11 20 for more details.
Pain
Pain following cancer and cancer treatment is not uncommon. For example, chemotherapy and surgery can injure nerves and cause pain and numbness in certain areas of the body. Or skin may be very sensitive in the area that received radiotherapy; this can last for a few months. Scars from surgery can also be painful for a long time. Some people have pain in a missing limb or breast. Doctors call this phantom pain. It is common when people lose a limb, and is an effect caused by your brain and nervous system. This type of pain is sometimes hard to treat. Whatever type of pain you have, you need to get pain relief. Be clear with yourself and your doctors about the pain. Once your doctor knows how much pain you are in, how often and the type of pain, they will plan suitable treatment. Try not to put up with the pain and think that you should be able to handle it. Asking for help isnt a weakness. It is your right and it is important that you are pain-free. You are likely to have enough to deal with right now and trying to live with pain on top of it all will only make things harder for you and those close to you.
Pain relief after cancer treatment

Depending on the type of pain and how severe it is, your doctor may prescribe drugs for pain relief (analgesia).
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Your doctor will usually begin with something mild and see what works for you. If you do need something stronger, such as codeine or morphine, dont be afraid to take them as often as your doctor tells you to. If your doctor prescribes it, this is because it is the best drug to help control your type of pain. Take it as often as your doctor prescribes it: you should not leave a dose out because you are not in pain at the time. Drugs for pain relief work best if you take them before pain becomes severe and then according to the dose prescribed by your doctor. Morphine is a very effective drug for pain relief. It is prescribed for people at different stages of the cancer journey, not only for people with advanced cancer. Dont feel that being prescribed morphine says anything about the stage of your cancer: its about the pain relief needed at that time, not about your cancer. Some people worry that they will become addicted. But this is very unlikely if you take the correct dose and see your doctor regularly. Most people who take pain relief for severe pain find it easy to stop when they dont need it any more. Others feel very frightened of being too drowsy or high while on them. Again, this is unlikely if you take them as your doctor prescribes. You may feel drowsy to begin with but this usually wears off within a couple of days. If it doesnt, it may mean that the dose is too high and your doctor can change this if necessary. If your pain is very severe you may need to take high doses of these drugs to help control your pain. This is quite safe. Dont worry that your body will become resistant to the drugs and they will no longer work for you. Your doctors and nurses will monitor you very closely for any side effects that you may have. In addition to morphine, your doctor may also prescribe other types of drugs to help relieve your pain. This may include anti-depressants and anti-epilepsy drugs. Again, these are safe and can help control some peoples pain a lot more. Being prescribed these drugs does not mean that you have depression or epilepsy.
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life after cancer
Strong drugs for pain relief almost always cause constipation. It is very likely that your doctor will also prescribe medication to deal with this. You may need to have physiotherapy to help with pain. The therapist may use heat, cold, massage or exercise. Some people find relief in acupuncture. This is a method for relieving some types of pain. The acupuncturist puts small needles into pressure points to help control your pain. Nerve blocks and surgery can help some people. But your doctor will usually only use these when nothing else is working. How you relieve your pain is best discussed with your doctor. They will know what type of cancer and treatment you had, why you have your pain and a bit about you as a person. Try to be as honest as you can. They need to know exactly how bad it is and how much it is affecting your day-to-day life. All these things are important in helping to decide the best treatment and care for you.
Other ways of helping relieve your pain

You and your family can do several things that may help with your pain. They may not be miracle cures but may give you some relief, even if only for a short time. And many people say that doing something for themselves gives them a feeling of having more control over their pain. Your pain may be worse at certain times of the day or when you are feeling anxious or upset. Take note of these times. Some of the following tips may help.
Try deep breathing, meditation or listening to your favourite
music. If you have trouble getting to sleep at night because of your pain, listen to some music or relaxation CDs, using earphones, in bed. If pain keeps you awake, get up at night to read, watch TV or listen to some music.
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Ask someone close to you to give you a gentle relaxing massage. It Complementary therapies such as massage, aromatherapy,
can help relieve aches and pains in the back. reflexology, hypnosis, yoga and acupuncture are known to help some people relax and better cope with their pain. Apply a warm or cold pack to the area of pain. Wrap the pack in a soft towel and check your skin regularly to make sure the heat or cold is not damaging your skin. Take a warm bath or shower. Dont sit or lie too long in one place. Move around to help prevent stiffness and sore skin. Talk to friends or family about your pain. This may help you relieve tension and make it easier to cope. Some people find it easier to talk with a counsellor rather than someone close to them.
Before you try any type of complementary therapy, check with your doctor that its okay. Sometimes a doctor will advise against a therapy. For example, your doctor may advise against a strong deep tissue massage if you have bone problems. Always let the complementary therapist know that you have had cancer. Refer to Support services and resources for websites about complementary therapies. If you would like to know more about your pain and getting support, contact the Cancer Council Helpline on 13 11 20.
Changes in the way you look and feel about yourself

Cancer and its treatment can affect how people look and feel about themselves. You may have changes in:
speech how well you can eat and drink, including swallowing problems breathing weight (weight loss or gain)
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memory and being able to concentrate bladder and bowel (for example, if you now have a colostomy or sexuality and sex life being able to have children (fertility) (see page 61).
How you look and how your body works is an important part of your self-esteem. Many cancer survivors say that they feel very angry and upset by the changes their cancer and its treatment may have caused. For some people these feelings can last a long time. It can be hard to accept sudden or unexpected changes to the way you look. You may worry about how your friends and family now look at you, and whether you are still attractive. Others worry more about how they will cope when they go back to work or even if they will be able to return to their old job. It is normal to worry like this. Try to get support from those close to you. Let them know how you are feeling. They are likely to want to support you and tell you that they still love and see you in the same way as before. Hearing these words may help you feel more confident. If you dont want to talk to friends or family about how you feel, it may help to talk to a professional counsellor. Some people say it helps to talk to someone who has gone through the same thing. Call the Cancer Council Helpline on 13 11 20 to talk about your concerns and resources and support services. For example, Cancer Connect is a telephone peer support service that puts people in touch with others who have had a similar cancer experience. You can talk to someone who understands what you are going through who knows what it is like to have cancer affect their life and the lives of those close to them. ileostomy)
Cognitive problems (chemo brain)

After chemotherapy many people say they find it hard to concentrate, focus and remember things. This is often called chemo brain. Chemo
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brain is not a proven side effect of chemotherapy and it is not clear how many of the cognitive problems described in this section are due to chemotherapy. It can be very frustrating, especially if you need to concentrate on fine detail, for example in your work or study. People who have always been able to concentrate well may find the changes embarrassing and hard to cope with. It may help to know that chemo brain can happen to anyone who has chemotherapy. Researchers are trying to discover what causes these memory and concentration problems after chemotherapy. The problems usually get better with time, but it may take a year or more. Some of the following tips may help:
Use a calendar or daily planner to keep track of tasks, Make lists of things you have to remember: things you need to do
appointments, social commitments, birthdays, etc. that day, things you need at the shops, even where you parked the car. See if exercising your brain, for example by reading, crosswords, puzzles, study or doing a hobby helps you to concentrate more. Plan your activities so you do things that require more concentration when you are more alert, such as in the morning. Get plenty of sleep and exercise. Deep sleep is important for memory and concentration. Exercising every day will help you sleep better. If your chemo brain affects your study or work, let your supervisor or manager know. See if project deadlines, performance reviews and so on can be rescheduled.
Try to be patient. Talking to others, for example, your partner, manager and colleagues, can help to prevent misunderstanding and frustration.
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life after cancer
Your sexuality and sex life

Cancer and its treatment may affect your ability or desire to have sex (libido). You may not even be aware that you are not taking an interest in sex or being as intimate as you might have before. If you have a partner, this can be confusing for them. Some people dont feel any differently sexually. But if you do, it can be difficult to deal with. Some of the changes are temporary; others may be longer lasting. Anyone who has had cancer may have sexual concerns following their treatment, but those most likely to report long-term problems are:
women who have had treatment for breast, bowel, ovarian, uterine
and cervical cancer men treated for prostate, bowel and lung cancer.
The Cancer Council has information on sexuality and cancer.

Visit www.cancervic.org.au or telephone 13 11 20.
What causes the problems?

Sexual problems can be caused by many things including:
feeling down and depressed changes in how your body looks or functions because of your
treatment pain and the side effects of drugs for pain relief feeling very tired a lot of the time (fatigue) how you see yourself (your body image) a range of emotions due to the cancer and treatment, such as anger, sadness and fear
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how your partner reacts and responds to you practical matters such as your job, money and caring for children
All of these things can affect how relaxed you feel about having sex.
The types of problems you may have

Because we are unique and have different sexual needs and desires, it is not possible to predict how each person will be affected. A lot will depend on the type of cancer and treatment that you had. Some women may find that changes to their body make it difficult or painful to have sex. Pain is often related to changes in the size of the vagina or vaginal dryness because of hormone treatment, pelvic surgery or radiotherapy. Early menopause brought on by treatment can also affect womens desire. Men may not be able to have an erection or ejaculate. Some prostate, bowel and rectal surgery or radiotherapy can make it difficult to have an erection. Erection problems can be challenging to come to terms with, and may have a big effect on your sex life. Your cancer and its treatment may have made you feel differently about your body. You may feel less sexual because you look different or feel less attractive: perhaps you have had weight loss or gain, a colostomy bag, or a testicle or breast removed. These dont mean you cant have sex, but you may feel less like having sex. You may feel embarrassed and upset by the changes and not want your partner to see you naked. This is natural. It may take some time before you feel confident about your new appearance and want to have sex again. Some people say that they were not prepared for the sexual changes from treatment. Others say that they avoid all forms of intimacy, including hugs, kisses and sharing feelings, in fear that it may lead to sex when they dont want it. Some people worry that they will never be able to have an intimate relationship again. If your cancer treatment has affected your ability to have children, this may also change the way you feel about having sex.
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life after cancer
Dont think that you have to do anything that you dont want to. It usually helps to talk to your partner about any issues. Let them know why you dont want sex but reassure them that you love them and want to be close. Most partners will understand and be happy to do things at your pace.
I didnt know when I was able to lift a vacuum cleaner or when it was safe to have sexual intercourse again. These things just werent mentioned. The only hint I was given was buy a good step-in. I have yet to work out how I am supposed to cope with this particular garment of torture and how that related to either vacuuming or my sex life. Ill leave that for you to work out. (Abbie)
Ways of coping with any sexual changes

Coping with sexual concerns will vary from person to person. What works for one person may not be helpful for another. Some of the following tips may help you.
If you have some pain but want to have sex, it can help to plan
ahead. It may not be as spontaneous and exciting, but taking drugs for pain relief an hour or so before sex may make things more enjoyable. Concentrate on being intimate in other ways such as kissing, massaging, talking and holding hands. If you have low or no sex drive, talk about it with your partner. They need to know so that they can think of ways to help get you in the mood. Try experimenting with ways of making you feel in the mood. For example, dress up, use candlelight and music, have a nice meal and some wine with your partner. Change positions during sex to see which is easiest for you.
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Talk to your partner about what you want and both feel happy
with. This may be difficult at first but might also be very reassuring. Talk to your doctor, who may be able to prescribe drugs that help with some problems, such as erection difficulties. If you have vaginal dryness or tightness, try a water-based lubricant during sex or, if you have had radiotherapy to your vagina, use a dilator during treatment and before sex. If you feel that you need more foreplay to help you relax and enjoy making love, let you partner know this. If you are having trouble being aroused by your partner, some people say that it can help to try to pleasure themselves. This may help give you the confidence that you can still enjoy sex. It might just take some time with your partner.
There are many other things that may help you and your partner enjoy sex more. You may find it helpful to talk to someone about sexual concerns. Not everyone finds it easy to talk to someone close to them. If you would like to talk to someone outside your own friends and family, call the Cancer Council Helpline on 13 11 20. They will be able to talk things through at your pace and may be able to reassure you about your concerns. Ask for a copy of the Cancer Councils booklet on sexuality and cancer. This booklet is for people who are having cancer treatment, but has useful information that will apply to cancer survivors as well.
Menopausal symptoms (women)

For women, certain cancer treatments can cause an early menopause. These include:
certain chemotherapy drugs radiotherapy to the pelvic area hormone treatment surgery to remove your ovaries.
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Going through a natural menopause is often tough for women. But menopause can be more severe if it happens suddenly because of cancer treatment.
What changes can happen?

Menopause means that your ovaries no longer produce an egg each month and you no longer have periods. This means that you can no longer become pregnant and have a baby. For women who want children and have not yet had them, this can be extremely sad. Even if you have had children, dont want any more or never did want children, it may still be upsetting. Some women just find it hard because it has taken away a part of their identity as a woman. See page 61 for more about fertility problems. Other symptoms of menopause include:
mood changes: some women notice that they feel a bit low at vaginal dryness, which can make it painful or uncomfortable to hot flushes and sweating (often made worse by taking hormone feeling very tired loss of concentration, self-esteem and confidence bone thinning (osteoporosis).
Many of these symptoms will pass, but it can take up to a couple of years. For many women, moderate to severe symptoms can often be relieved by taking hormone replacement therapy (HRT). HRT is taken as a daily tablet or skin patch and contains female sex hormones to replace those that your body is no longer making naturally. However, after some types of cancer, taking HRT is not advised. For example, if you had a breast cancer that is likely to grow in the presence of hormones, your doctor is likely to strongly advise against blocking treatments such as tamoxifen) have sex times; others suffer anger, depression or anxiety problems
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taking HRT as it could increase the risk of your cancer coming back (recurrence). Sometimes, where women are having a lot of problems and nothing else has helped, some breast cancer specialists may suggest taking HRT. Talk over these issues with your doctor and weigh up the possible benefits and risks for yourself.
Coping with menopausal symptoms

For some women, coping with symptoms without HRT may be very difficult. You may find that your confidence and self-esteem suffer quite a bit. Some women find it helps to talk with a counsellor about how they feel. Others find comfort and support from their friends and family. The important thing is to do what works best for you. What happens to you and your body during menopause is in many ways not under your control. So be kind to yourself and try not to lose too much confidence. Below are some suggestions, other than taking HRT, which may help lessen some of the physical effects of menopause.
Vaginal dryness
Some women may be able to use vaginal oestrogen. This comes in the form of a cream or pessary that you put into your vagina a couple of times a week. Your body will only absorb a very small amount of the oestrogen, so it wont affect the rest of your body. If you think this may help, ask your doctor if this is an option for you. Other options include using non-hormonal creams that you can buy from the chemist or using water-based lubricants during sex.
Hot flushes and sweats
If you cant take HRT, symptoms can be hard to control. Many women want to try non-drug type methods to help stop their hot flushes. Some women use acupuncture, homeopathy, evening primrose oil or plant
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oestrogens (phyto-oestrogens). Research is needed to show whether they really do help. Research has shown that low-dose progesterone helps to reduce hot flushes and sweats in some men and women who are taking hormone therapy for their cancer. Many doctors think that very low doses are safe even if you have a hormone-dependent cancer. Another drug that has shown to help some women cope with hot flushes is an antidepressant drug called venlafaxine. Your doctor is the best person to talk to about whether or not either of these drugs might help you. Simple ways of coping with hot flushes include standing near an open window or keeping a small fan nearby. Use cotton clothing and sheets to help your skin to breathe. Dress in layers so you can remove some clothing when having a hot flush. Have a cool drink when a flush starts.
Mood changes
Mood changes during menopause can become very upsetting not only for the woman but also for people close to them. Feeling low, sad, angry, anxious, irritable, frustrated or depressed is not uncommon. You may find it very hard to cope with your feelings and not know who to talk to. There is no magic cure. But many women say that it can help to:
be active: develop a daily 30 minute exercise program that suits eat healthily: a balanced diet keeps your body and mind healthy drink plenty of water try relaxation techniques such as deep breathing, listening to
you and try to stick to it
music that you like or meditation: regular practice may help you to feel calmer and more in control of your feelings let people close to you know how you are feeling: if they dont understand your moods it is likely to cause more problems.
All of these suggestions may help control other symptoms of menopause as well.
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Effects of hormone treatment (men)

The symptoms described in the menopause section above are commonly associated with menopause in women. But men who are taking hormone treatment or have had their testicles removed may also have these symptoms. It may help you to read the section above.
Feeling low or depressed

It isnt uncommon to feel very low or depressed for some time after your treatment finishes. Or you may feel okay for a while and then start to feel sad or down a few weeks, months or even years later.
Feeling low
Try not to be too surprised if you do feel fed up and unhappy at certain times. With all that you have been through, and now trying to rebuild your life, it is quite normal. Knowing why you feel like you do can help you to work through your feelings. Some people feel sad or depressed because of the changes that their cancer has caused. Others feel very down because they are frightened about the future. Will the cancer come back? Will they be able to work again? How will the family cope if they cant earn any money? Whatever is making you feel down, it is important that you get support.
Signs of depression
There is a difference between feeling down and sad for a while and feeling very depressed for long periods. Depression is much harder to cope with and can go on for a long time if you dont get the right sort of help. Depression is quite common and needs to be treated. If you have one or more of these signs for a few weeks or more you should see your GP:
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feeling very sad and low most of the time not being able to enjoy life as you usually do having negative thoughts about yourself a lot of the time changes in your eating habits: eating much more or less than usual weight gain or loss feeling very tired a lot of the time loss of concentration loss of interest in sex changes in your sleep habits: not being able to get to sleep, waking in the early hours of the morning or sleeping more than usual often feeling very anxious and upset feeling that you want to die or would like to kill yourself.
These are not the only signs of depression. Some of these symptoms may be caused by other medical conditions. But if you have some of these signs or think that you may be depressed, it is important that you get some professional help. It often helps to let someone close to you know how you are feeling. Also, it is important to let your GP know. Be honest with them about how you feel. This will help your doctor and you make the right decisions about the type of support and care you need.
What help can I get with feeling depressed?

It isnt a weakness to feel depressed and ask for help. Try not to beat yourself up and think that you should be able to cope alone. It takes a lot of courage to ask for help and it is important to feel good about yourself and life again. There are lots of things that can be done to help with depression, for example professional counselling or psychotherapy. Anti-depressant drugs can make a dramatic difference for some people. Whatever works for you is all that matters. Your doctor will be able to explain the difference between counselling and psychotherapy, and between a counsellor, psychologist and psychiatrist. This will help you to choose the support you need.
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Ways to help yourself feel better

These suggestions may help you feel more in control and positive that things can get better.
Complementary therapies such as massage, yoga, hypnosis,
Make sure you take care of yourself. Eat a well-balanced diet with
acupuncture and reflexology may help improve your mood.
lots of fresh fruit and vegetables and drink plenty of water. Get regular exercise. Many people say that being active helps lift their mood. Share your feelings with someone close to you: just having them know how you feel can help you feel less alone. Even if you dont feel like it, try to push yourself to go out and do something you enjoy. A change of scenery can often make you feel better. Some people find it helps a lot to write down how they are feeling. Others might find it easier to express themselves in painting, drawing, music or singing.
If you have signs of depression (see the section above), see your doctor. Some of these approaches may also help, but depression really needs the care of a doctor as well.
Herbal products to treat depression

Over the past few years there has been a lot of interest in the use of herbal products to help treat depression. But just because something is labelled natural doesnt always mean that it is safe to take. Some can have very serious side effects and may interact with other drugs that you are taking. Two herbal products that have been given a lot of attention in the media as being able to help treat depression are St Johns Wort and Ginkgo biloba. Some research suggests that these herbs may help lift mood for some people; however, other research has not found this to be the case.
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Both have side effects and should not be taken with other antidepressant drugs. The Cancer Council strongly discourages anyone from using any herbal products without first consulting their doctor.
See the Support services and resources section at the end The Cancer Council has a booklet about complementary
therapies and alternative cancer therapies. Visit www.cancervic.org.au or call 13 11 20 for a copy.
of this booklet for websites that provide information about complementary and alternative treatments.
Fertility problems
Loss of fertility can be a side effect of some cancer treatments. This means that you will no longer be able to have children. For some people this is only temporary, but for others it is permanent. Having children may not be a priority for you: other long-term side effects may be more difficult to cope with. If you have always wanted to have children, you may be very sad to hear that is no longer possible. While you may have coped well with the news during treatment, you may find it very difficult to cope with after treatment finishes. Your age and whether or not you have children already can play a part in how you deal with the news of infertility. But even if you have children and were not planning to have any more, you may still feel a sense of loss: that you are less feminine or manly because you cant have children. You may feel very angry, sad or anxious that your cancer and its treatment caused these changes to your body. If you are finding it hard to come to terms with being told that you cant have children, call the Cancer Council Helpline on 13 11 20. You will be able to speak with a qualified cancer nurse, who can offer you support and advise how you and those close to you can best cope.
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Other problems
Other problems after cancer treatment can include:
changes in the way your bladder and bowel work problems with eating, drinking and your weight mouth problems and teeth problems swelling in your limbs (lymphoedema).
In this booklet, weve discussed the most common problems. If you would like to know more about any of the problems listed above or any other problems contact the Cancer Council Helpline on 13 11 20. Also refer to the Support services and resources section.
The more you know, the better your chances are you make better choices, you feel more confident. (Jason)
Other health problems that you had before your cancer, such as diabetes or arthritis, can complicate things. Getting older can also worsen some problems. Ask for medical help for any long-term problems that you may have. You may also benefit from emotional support. Side effects can cause strong emotions and finding the best way to cope with them can take time and patience. Many people find it helps to join a support group or to talk to a counsellor or to someone who has been through similar experiences. Do whatever works for you.
About using complementary therapies

Some cancer survivors say that using complementary therapies after their cancer treatment helps them to:
cope with some side effects such as pain and fatigue relieve the stress of rebuilding their life relax and feel good again feel more in control of their situation.
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Complementary therapies are used with, not instead of, medical treatments. Examples include yoga, gentle massage, reflexology, acupuncture, meditation, hypnotherapy and counselling. Although there is no research to prove that these therapies can stop your cancer coming back or prevent a new cancer, they can be comforting. The touch, talk and time people receive from their therapist can be very reassuring. Music or art therapy can be useful in helping people to express their feelings and remain positive about their future. Most complementary therapies are safe to use and if they help, most doctors will be happy for you to use them. But it is important to talk to your doctor before using any type of therapy. A good complementary therapist will always encourage you to talk with your cancer doctor or GP. If you would like information about a type of complementary therapy, call the Cancer Council Helpline on 13 11 20. Also refer to the Support services and resources section.
The Cancer Council has a booklet about complementary and

alternative cancer therapies. Visit www.cancervic.org.au or call 13 11 20 for a copy.
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Dealing with practical issues
After any serious illness, people may be faced with practical problems. This section describes specific problems and suggests who to contact for help.
The Cancer Council Helpline (13 11 20) can provide contact

details for many local services.
Insurance, superannuation and loans

Many cancer survivors say that after they finish treatment they feel they want to get their money matters in order. This could mean talking with a superannuation fund, wanting to get life insurance or managing your income to provide for yourself or your family. You may worry that because you have had cancer you may no longer be eligible for certain financial services, for example, getting a credit card, mortgage or personal loan. You often dont have to give your medical history to get any of these. Getting new insurance (life, income cover or travel) may be more difficult because you have had cancer. You will need to provide your
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medical history for many insurance policies. A mortgage is often linked with some kind of insurance so you are likely to have to let them know that you have had cancer. Many people do not know that they can claim disability benefits from their superannuation or insurance. If your working life is cut short, you probably wont have enough superannuation. Extra disability benefits will help you. This is because your superannuation is designed to last for an average period of retirement, not longer.
The Chronic Illness Alliance (www.chronicillness.org.au) can
provide free superannuation and insurance advice to people with disabilities.
You may wish to ask lawyers who have expertise in superan-
nuation and insurance for advice or see a financial counsellor. To find a lawyer who specialises in this area, call the Law Institute of Victoria Referral Service on (03) 9607 9550.
Working after your treatment is over

Some people continue working during their treatment. But cancer and its treatment can prevent others from going back to their previous type of work. Some people may be able to re-train and take on a different job. This is a big commitment and may take a lot of courage and patience. Others may be physically able to return to their old job but not feel emotionally up to going back straight away. Some cancer survivors want to take some time out from work after treatment and rethink what they would like to do with their life. Others are very keen to get back to work as soon as possible. For many, working may represent normality and is a sign that they are over their cancer. Some people have no choice but to return to work because of income and family needs.
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If you had to leave your old job before or during treatment, you may find it hard to get another job now treatment is over. Most employers are supportive of employing someone who has had cancer. But sometimes this is not true and it can come as quite a shock. Everyone is different and reactions will vary. The most important thing is that you feel supported and informed about your choices. The Cancer Council Helpline (13 11 20) can talk to you about returning to work.
What if my previous employer has treated me unfairly?

Some people are forced to leave their jobs because of a cancer diagnosis or treatment. If you believe you have been unlawfully discriminated against because of a diagnosis of cancer, you should seek legal advice straight away. You can get free initial advice from the Disability Discrimination Legal Service. This service specialises in Disability Discrimination Law. You can also contact the Equal Opportunity Commission of Victoria or the Human Rights and Equal Opportunity Commission (Commonwealth). For contact details, see the Support services and resources section.
The
Cancer Council has information on legal rights and responsibilities for people with cancer. Visit www.cancervic.org.au or telephone 13 11 20.
Possible challenges you may face if you do go back to work

If you return to your job, or start a new one, and people are aware that you have had cancer treatment, you may face some challenges. Co-workers are often great friends and provide strong support. However, some co-workers may not know how to react and be
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frightened of hurting your feelings, so they may avoid saying anything at all. They may act as though nothing has happened and believe you must be okay because you look well and seem to be able to do your job again. Others may ask you questions that you are not ready to answer. You may feel angry, hurt and frustrated by peoples reactions. The more relaxed and open you are about your cancer and its treatment, the more likely it will be that your co-workers respond to you in a way that feels right for you. If you are having a lot of trouble settling back into your work life, it may help to talk with a counsellor. Some workplaces will have someone on site who you can talk to. If not, call the Cancer Council Helpline on 13 11 20.
What if I can no longer work?

Not being able to work can be very stressful. You will most likely still need a regular income to pay for bills, the mortgage or rent, and other living expenses. Its important that you get the support and advice that you need. The Department of Human Services can help with financial and practical matters. For details about disability, sickness and carers payments, call Centrelink on 13 27 17. Some people find it useful to see a financial adviser (you may also hear them called a financial planner or consultant). Try your bank or look for an independent financial adviser in the telephone book or on the Internet.
Support with childcare and home duties

You may be eligible for help with childcare costs: call the Family Assistance Office on 13 61 50. Local councils provide a range of community and in-home services, including foster care for children, meals on wheels, housekeepers and respite care. Telephone your council (listed by council in the White Pages).
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For more information about practical and financial support, contact your local hospital, community health centre or the Cancer Council Helpline on 13 11 20.
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Questions for your doctor
See the list of questions about follow-up care on page 24. You may also find the following list helpful when thinking about questions for your doctor after your treatment. 1 2 3 4 5 6 7 8 9 10 11 12 13 Am I at risk of getting long-term health problems because of my cancer or its treatment? What can I do to help with feeling so tired all the time? Where can I get help for dealing with my feelings? How do I know if I need counselling for my emotional concerns? Can you refer me for professional counselling? Do I have to pay for professional counselling? Is there a special diet I should follow to stay healthy after my treatment finishes? What exercise program would you recommend? Is there anyone I can talk to about eating a healthier diet? It hurt when we had intercourse. Why? What can I do if I cant get an erection? I have vaginal dryness. What would you recommend? Would you recommend hormone replacement therapy?
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14 Where can I find out about finding a sexual counsellor or therapist? 15 What sexual changes are likely to be short-term and what changes are likely to be long-term? 16 Am I likely to have long-term problems with pain? 17 How can I control my pain? 18 Are there any complementary therapies that I may find helpful? 19 Will I always worry about my cancer coming back? 20 Am I likely to get another, different cancer? 21 Are there any problems that I should watch out for? 22 Is it possible to talk to someone who has had a similar experience to me? 23 Are my children at risk of inheriting my cancer? 24 Who can I talk to about financial problems?
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Support services and resources
This is a brief listing of some major services and resources that you may find helpful. We regularly update our cancer services directory. Visit www.cancervic.org.au for more information.
Support services
Cancer Council Helpline
The Cancer Council Helpline is a confidential service where you can talk about your concerns and needs with cancer nurses for the cost of a local call. They can send you information and put you in touch with support services in your area. Telephone 13 11 20, Monday to Friday 8.30 am 6 pm.
Other telephone helplines
Lifeline can provide information, counselling and referral for people with health and family-related problems: telephone 13 11 14 (24 hours, seven days).
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Talk to someone who has been there
Talking with people who have been through a similar experience can be helpful. There are many ways to contact others for mutual support and to share information. In these support settings, most people feel they can speak openly, share tips with others, and just be themselves. You will probably find that you are happy to talk about your diagnosis and treatment, your relationships with friends and family, and your hopes and fears about the future. Cancer Council support services available for patients, carers and family members include:
Cancer Connect, a telephone peer support program that matches
you with a volunteer who has been through a similar cancer experience, and who understands how youre feeling face-to-face support groups, which are often held in community centres or hospitals telephone support groups for certain situations or types of cancer, which trained counsellors facilitate online discussion forums (see www.cancerconnections.com.au) where people can connect with each other.
Ask your nurse or social worker to tell you about support groups in your area. Visit www.cancervic.org.au or call the Cancer Council Helpline on 13 11 20 to find out how you can connect with others. Joining a consumer advocacy group can also be a rewarding experience for people who would like to use their experience to make a difference for others like themselves. Visit www.cancervoicesvic.org.au for more information.
Carers
The Carers Advice Line provides information and support for people caring for people with illness and disability: telephone 1800 242 636. You can also contact the Cancer Council Helpline on 13 11 20 to find out about Cancer Connect for family and carers.
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life after cancer
Continence assistance
Specialist continence adviser nurses from the Royal District Nursing Service are able to visit you to assess your continence and provide advice and support. Contact 1300 33 44 55 to be put in touch with your closest centre. Ask your GP or cancer specialist for a referral to a professional counsellor to talk about specific concerns: for example, your feelings about your cancer and its treatment, sexuality and sex life and relationship problems. You can also call the Cancer Council Helpline on 13 11 20. Centrelink can help with Commonwealth Government disability, sickness and carer payments. Telephone 13 27 17. The Cancer Councils Financial Assistance Program assists people with cancer. Telephone 13 11 20.
Your general practitioner (GP) Financial assistance Counselling
If you dont have a GP, call your local health centre to find a GP in your area.
Home help
Local councils provide a range of services, including foster care for children, meals on wheels, housekeepers and respite care. Telephone your council (listed by council name in the White Pages).
Home visitors
DoCare (see the White Pages for the service in your region) can organise home visitors for social support. Other charitable organisations may be able to help, as may a local Cancer Support Group. For information, telephone 13 11 20.
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Legal advice and information
See your solicitor or call the Cancer Council Helpline for a list of community legal centres. If you do not have a solicitor, contact the Law Institute of Victorias Legal Referral Service on 9607 9550. Other useful contacts are:
Disability Discrimination Legal Service: 9602 4877; 1300 882 872 Equal Opportunity Commission of Victoria: 9281 7111 Human Rights and Equal Opportunity Commission:
(02) 9284 9600
Multilingual Cancer Information Line
(toll free)
The Multilingual Cancer Information Line is a confidential service of the Cancer Council. You can call and speak to a cancer nurse with the help of an interpreter for the cost of a local call. It is for people with cancer, and people who are close to them. People who speak any language can use the service. For more details see the inside back cover.
Social workers
For counselling, information, support and practical assistance, contact your hospital and ask for the social worker. You do not need a referral from a GP to see a social worker. Your local community health centre may also have a social worker on staff, or be able to refer you to a social work service.
Pastoral care workers
Pastoral care workers are able to discuss practical and spiritual concerns (from all religious and non-religious viewpoints). They are trained to be good listeners and to help people to explore their own spiritual beliefs. Any person with cancer, or carer or family member of
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a person with cancer, can talk to a pastoral care worker. Contact your hospital for more details.
I was treated for my cancer in the private health system and my oncologist referred me to an oncology social worker. I was able to see an oncology social worker promptly within a week prior to commencing treatment and continued receiving counselling and support through treatment and cancer survivorship. The cost of seeing the social worker was subsidised by a local community group, and therefore was affordable for me ... My oncology social worker was able to assist with practical, emotional, psychological and support issues and became an integral part of my treating team, as she worked closely with my GP and oncologist. (Laurelle) [Please note, in the public system, there is no charge for social work services.]
Websites
Survivorship
These US websites will be useful for people who want to know more about survivorship.
The National Cancer Institute, Facing forward series, Life after

cancer treatment: www.cancer.gov/cancertopics/life-after-treatment American Cancer Society Cancer Survivors Network: www.acscsn.org The National Coalition of Cancer Survivorship: www.canceradvocacy.org
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Complementary and alternative therapies
Cancer Council Victoria, for information to help you make
informed decisions about complementary therapies and alternative cancer therapies: www.cancervic.org.au US National Cancer Institutes Center for Complementary and Alternative Medicine (NCCAM), a US government centre that supports scientific research into complementary therapies and alternative therapies: www.nccam.nih.gov Quackwatch (provides information about alternative treatments and aims to present a scientific assessment of these treatments, which may range from being of some benefit through to being harmful): www.quackwatch.org Memorial Sloan Kettering Cancer Center, for information about the safety of using many different herbs, botanicals and other products: www.mskcc.org
Continence and impotence
Andrology Australia, for information on male reproductive
health: www.andrologyaustralia.org Continence Foundation of Australia: www.continence.org.au
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Glossary: what does that word mean?

Most of the words here are used in this booklet; others are words you are likely to hear used by doctors and other health professionals who will be working with you. If there are any other words in this booklet that you dont understand and they are not listed here call the Cancer Council Helpline on 13 11 20. acupuncture A type of complementary therapy where fine needles are inserted into the skin at specific points to try to relieve pain and other symptoms. advanced cancer Cancer that has spread (metastasised) and/or is unlikely to be cured. anaemia Having a low number of red blood cells in your body. This is measured by a blood test and treated with iron tablets or a blood transfusion. analgesia A drug that relieves pain. anti-depressant Medication to help relieve the symptoms of depression. Sometimes also used to treat some types of pain. cancer survivor Anyone who has finished their active cancer treatment, whose doctor has told them that their treatment has been successful and that they are free from any signs of cancer. check-ups Medical appointments after treatment has finished. These appointments may also be called follow-up. chemotherapy The use of special drugs to treat cancer by killing cancer cells or slowing their growth. Chemotherapy can also harm normal cells, but they are usually able to repair themselves.
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complementary therapies Therapy used alongside medical treatment to help manage symptoms and side effects. diagnosis The process of finding out about a persons illness by considering their signs and symptoms, medical background and results of diagnostic tests. depression Prolonged very low mood. Feeling sad, having no energy and being unable to change how you feel. fatigue Feeling extremely tired and lacking energy. fertility Ability to have children. follow-up Medical appointment to follow your progress after treatment. hormone-dependent cancer A tumour where cell growth is influenced by hormones. hormone treatment Treatments for hormone sensitive cancers, including breast cancer and prostate cancer, to block hormones that may cause a cancer to grow, or to shrink a tumour. menopause The end of menstruation. Usually it happens in women around the age of 50, but illness and some medical treatments can cause an early menopause. menopausal side effects Side effects from menopause such as hot flushes, sweating, putting on weight and feeling anxious. These happen because the body is getting used to lower levels of sex hormones (oestrogen and progesterone). metastases Also known as secondaries. Tumours or masses of cells that develop when cancer cells break away from the original, primary cancer and are carried by the lymphatic and blood systems to other parts of the body. Metastases are named for the organ they
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came from: prostate cancer that spreads to the liver is secondary prostate cancer, not liver cancer. morphine A strong and effective drug for pain relief that is used commonly to treat people with cancer who have pain. primary cancer Where the cancer started. At some stage, cells from the primary cancer may break away and be carried to other parts of the body, where secondary cancers may form. radiotherapy The use of radiation, usually x-rays or gamma rays, to destroy cancer cells or injure them so that they cannot grow or multiply. Radiotherapy can also harm normal cells, but they are usually able to repair themselves. recurrent cancer A cancer that grows from the cells of a primary cancer despite previous treatment. Recurrent cancer may appear some years after the primary cancer was treated, depending on the type of cancer. reflexology A type of complementary therapy. The therapist massages and puts pressure on specific points on your feet, similar to acupuncture points, which is said to help unblock energy. statistics Collecting and analysing data to make comparisons and see patterns in research results.
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Index
acupuncture 47, 48, 56, 60, 63, 77, 79 advanced cancer 1, 46, 77 anaemia 42, 77 anti-depressants 46, 57, 58, 61, 77 anxiety 25, 41, 55, 59, 61 body image 8, 17, 51 Cancer Connect 19, 45, 49, 72 Cancer Council Helpline 1, 19, 22, 33, 39, 41, 45, 48, 49, 54, 61, 62, 63, 64, 66, 67, 68, 71, 72, 73, 74, 77, 81 Cancer Council Victoria 76, 81 cancer nurses 1, 33, 61, 71, 74 Cancer Support Groups 26, 73 check-ups 20, 21, 22, 24, 25, 26, 27, 28, 77 chemo brain 49, 50 chemotherapy 45, 49, 54, 77 childcare 67 cognitive problems 49 complementary therapies 48, 60, 61, 62, 63, 70, 76, 78 constipation 34, 47 depression 10, 17, 41, 46, 55, 58, 59, 60, 77, 78 diagnosis 1, 6, 16, 22, 31, 35, 66, 72, 78 diet 35, 38, 57, 60, 69 drinking 41, 62 eating 11, 35, 38, 41, 42, 59, 62, 69 exercise 11, 18, 35, 38, 39, 43, 44, 47, 50, 57, 60, 69 fatigue 17, 18, 24, 39, 41, 42, 43, 51, 62, 78 fear 9, 10, 13, 21, 25, 26, 28, 30, 32, 51, 52, 72 fertility 41, 49, 55, 61, 78 follow-up 20, 21, 22, 24, 27, 69, 77, 78 hormone-dependent cancer 57, 78 hormone treatment 52, 54, 58, 78 insurance 64, 65 legal advice 66 lymphoedema 41, 62 menopause 23, 52, 54, 55, 56, 57, 58, 78 morphine 46, 79 mouth problems 41, 62 pain 17, 24, 29, 39, 41, 42, 45, 46, 47, 48, 51, 52, 53, 62, 70, 77, 79 pain relief 45, 46, 47, 51, 53, 79 recurrent cancer 27, 30, 31, 56, 79 sexuality 8, 41, 49, 51, 52, 53, 54, 56, 73 side effects 6, 8, 9, 16, 17, 18, 20, 21, 22, 23, 24, 25, 30, 40, 41, 43, 46, 51, 60, 61, 62, 78 smoking 35, 36, 44 statistics 31, 32, 79 superannuation 64, 65 support services 1, 19, 49, 71, 72 survival rates 31, 32 symptoms 17, 22, 24, 27, 29, 30, 33, 34, 39, 54, 55, 56, 57, 58, 59 UV radiation 36, 37 websites 75 weight 34, 38, 41, 48, 52, 59, 62, 78 work/employment 8, 17, 18, 19, 24, 41, 49, 50, 58, 65, 66, 67
80
life after cancer
Your comments
We would appreciate your feedback on the information in this booklet. Please complete and return to: Cancer Information and Support Service Cancer Council Victoria 1 Rathdowne Street Carlton Vic 3053 or contact cis@cancervic.org.au or call the Cancer Council Helpline on 13 11 20 Are you a cancer survivor or a carer of a survivor?
Was the information helpful? If yes, what was most helpful? If no, what else would you have liked to know about?
Any further comments
Cancer information in other languages
for other languages please call 9209 0169. tell us which language you speak and an interpreter will help you talk to a nurse. to speak to a nurse in english, call 13 11 20. internet: for information in a range of languages please visit our multilingual website at: www.cancervic.org.au/other_languages
For free cancer information and support from a qualified cancer nurse call the Cancer Council Helpline on 13 11 20 or visit www.cancervic.org.au
Monday Friday, 8.30 am 6 pm (cost of a local call) Multilingual information service also available
1 Rathdowne Street Carlton, Victoria 3053 Facsimile 9635 5270 enquiries@cancervic.org.au

Life After Cancer: A Guide For Cancer Survivors

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Life After Cancer: A Guide For Cancer Survivors

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Life after cancer

A guide for cancer survivors

a guide for cancer survivors