She has secondary breast cancer. How can I support her?

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1 She has secondary breast cancer How can I support her?

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3 What is secondary breast cancer? Secondary breast cancer is when cancer cells have spread from the original tumour site in the breast to other more distant parts of the body. Terms such as advanced breast cancer, metastatic breast cancer, secondary tumours, and secondaries are all different ways of describing secondary breast cancer they all mean the same thing. The original cancer in the breast is known as primary or early breast cancer. If breast cancer does spread, it is most likely to be found in the bones, liver or lungs, although it can sometimes be found in the brain or other areas. It may affect one, or more than one location at the same time. Even the best treatment for early breast cancer doesn t always remove every cancer cell. Most commonly, secondary breast cancer develops from cells that were left behind. Other times, cancer cells start to travel around the body before the tumour in the breast is found and treated. In this case, if it is already large enough to see on a scan, secondary breast cancer may be diagnosed at the same time as the primary breast cancer. Sometimes, less commonly, a secondary tumour is the first to be found and diagnosed. Most women who are diagnosed with secondary breast cancer have already had a breast cancer diagnosis in the past. For a small number of women, the diagnosis of secondary breast cancer may be their first cancer experience. Either way, hearing that someone close to you has secondary breast cancer can be devastating news that may be difficult to understand and come to terms with. It can bring up many emotional responses ranging from disbelief, to anger, to fear. 1

4 Not so many years ago, when women were told their breast cancer had spread to distant parts of their body, they would accept that their life would be soon over. Now, with improved treatments and better management, some women are living with secondary breast cancer for many, many years. For those who have the good fortune to respond well to treatment, secondary breast cancer can be managed more like a chronic illness, which might flare up from time to time, but offers extended periods of wellness in between. Women with secondary breast cancer may be facing years of various active treatments. These usually involve chemotherapy, radiotherapy and hormone therapy, but may also include other types of treatment, depending on the location and extent of their cancer. Many women will have very long periods of wellness, with little or no treatment some for many years. Others will reach a stage where there are no further active treatment options available. Treatment and care they receive will then be aimed at keeping them comfortable towards the end of their lives. Once experienced, secondary breast cancer will be part of a woman s journey for the rest of her life, and no two journeys are the same. Your support will help her to face the hurdles, and to enjoy her life with hope and happy times. I don t want sympathy. I want respect, understanding and support, encouragement to keep life as normal as possible. Angela Dealing with your own feelings Whatever your relationship, before you start to think about how to help a woman close to you with secondary breast cancer, you may want time to absorb the information and think about what it means to you. You may want to talk about your thoughts and feelings with a close friend or family member. Secondary breast cancer impacts the whole family and friends. 2

5 How can I support her? Emotional support People often find it difficult to know what to say, or feel unsure of how to respond when someone close to them has cancer. Some fear saying the wrong thing but many women say that the worst thing people can do is to avoid them. The best approach is to just be yourself. Secondary breast cancer is confronting, but it is not contagious. After my diagnosis, there appeared to be a wall of silence and I felt a real pressure not to speak of my experience. Beverley Don t be frightened to talk about it. It is a terrible thing to happen but if people ignore it you feel worse, more isolated. Jan When I was first diagnosed, I felt people were avoiding me and ignoring the fact that I had a life-threatening condition. I realise that it can be uncomfortable but you often just need a shoulder to cry on. Kay Every woman s experience of secondary breast cancer is unique, as is the way she lives with the disease. Initially she will be facing some very difficult emotions, challenging decisions and tough times. People say you cope so well and are so strong but what they see is not how it always is. At times I am terrified sometimes I put on a mask. Judy 3

6 Try to understand that there may be days (or even hours) when she feels down and teary (particularly if she is menopausal!) and that s when she may just need a hug. When she s up and happy, join in with her. Helen Women with secondary breast cancer fluctuate from feeling extremely well to very unwell, depending on their treatment, the stage of their disease and how this affects them both physically and emotionally. There will probably be particular days following treatment such as chemotherapy or radiotherapy when they feel more unwell than others. Also, certain times of the day may be better than others. Some women may feel nauseous first thing in the morning; others might feel exhausted in the evening. You could ask whether there are usual good and bad times, and arrange your support accordingly. It helps to be understanding if arrangements have to be changed at the last minute. Offer encouragement, support and match the woman s mood. If she is positive about the situation, be positive with her as it is often hard to deal with the sadness of family and friends. Lisa 4

7 Be patient, stay in touch. Initially there may be nothing to do but be there. There is more to life than cancer. At first I felt as if I was in shock, later I experienced grief and loss and now (two years later) I have moved from that stage. Now my diagnosis is part of my life. Treatment is part of my life. To date it has not been so bad. Barbara I have lots of friends who tell me I look well, that my wig makes me look younger, that they want me to come and see them etc. All these thoughts and comments become very important when sometimes you feel near death s door. Jill Don t be afraid of asking how she is feeling but don t talk only about the disease. Diana If you re able to, let her know she can call you and that you re happy to come over whenever you re needed. Phone her, but be aware that at times even talking may tire her. Often women lie awake at night worrying. If you don t mind taking her calls in the middle of the night, let her know. She may welcome your visits, but it s usually best to check how she is feeling beforehand. Don t arrive with sick or noisy children, and don t visit her if you are unwell yourself. Tell her that you love her. Buy her nice things like perfume, clothes, jewellery things that make her feel beautiful. Lyndal 5

8 Practical support Well-meaning friends will often say just let me know if there s anything you need but most people won t ask for help. Acts of support that come out of the blue are most helpful. Instead of a general offer of help such as cooking food sometime just deliver it. Same with help around the home then it doesn t feel such a burden asking others to do things. Lisa Any help you can give will be valued and remembered. This can be minding children, cooking meals or meeting for a coffee. It is sometimes hard to ask for what you need, so it is good to just show up with some frozen meals or a cake. Diana You could offer to take her shopping, or to the library, or if she s not up to it, get a list from her and do the shopping, or collect books for her. If she has children, you could offer to take them to and from school, or social or sporting events. She may be grateful if you looked after them for an afternoon or a day, or had the children overnight occasionally. She might appreciate it if you walk her dog, wash her car or water her garden. If you can, go to doctors or treatment appointments with her. Sometimes having someone waiting for you, or being there to take notes, can be a big help. But, if the woman doesn t want anyone with her on a particular day accept it. Helen 6

9 She may welcome some help with sorting out medical bills, Medicare and health fund claims a task that most people find tedious and time consuming. The most important thing that family and friends can do is to give this woman a feeling of being cared for and thought about. My sons are both very supportive the one who doesn t live with us rings up most days and this sort of contact is very helpful. Other family ring regularly or visit, often with a special meal or biscuits and friends do the same. I think these loving gestures are very important. Jill Hospital food can become boring, and her tastes may alter during chemotherapy treatment. Take some of her favourite food in to her in hospital especially if she s not enjoying the meals. A disruption to the usual routine may be a welcome relief to her. Ask her if she would be interested in having some fun. Perhaps organise a trip to the theatre or cinema, dinner with friends, a picnic or walk or simply visit with take-away and watch a movie together. Send a bunch of flowers or send a card just because you want to and because you re thinking of her. Sometimes offering some quiet companionship hits the spot a stroll by the lake, a Sunday afternoon drive for an ice-cream. Helen Many women say that people are very supportive when they are first diagnosed, but the support drops off over time. Secondary breast cancer is a journey, with varying periods of illness and wellness. Offering ongoing support, even during times of wellness, will be very much appreciated. 7

10 What s not helpful Women with secondary breast cancer are often given the strong message by others that they should always be positive. This message might not be helpful. It may make it hard for her to talk to you about how she really feels. Slap anyone who says be positive. That s their reality not yours! Judy If she shows anger, despair and resentment, this is quite normal, although it could be hard for you to deal with. She will get upset from time to time, which is very normal. The best you can do is to listen. Saying everything will be okay probably won t help she may even feel that you are dismissing her feelings. You might ask her what can I do to help you right now? She may just want you to listen. I encourage you, my friends and family, to talk to me, ask how I feel and be prepared to listen. It is not necessary for you to talk just be there. Cry with me do not say that everything will be okay. Alex Ask how she is and go with her flow as to how much detail she wants to tell you but do ask. Lyndal 8

11 It is common for those close to the woman to feel powerless and to search desperately for ways to be helpful, or to find the all elusive cure. Offering information about the latest cure or treatment you ve heard about is not usually helpful. Nor are suggestions that she should dramatically change her lifestyle or diet. Please don t share every invention and cancer cure you ve seen on TV, heard about on radio, read in a magazine or newspaper I don t want to know! Don t tell me I should take more vitamins, eat more broccoli/ spinach/whatever I am a big girl now and I can decide what I take and what I eat. Helen So many people would ask me probing questions about my treatment and prognosis and wanted my reassurance that I would be okay. It was exhausting to provide that support when I needed support myself. Questions like How long do they give you? infuriated me. The unspoken words were How long til you die? All I wanted was reassurance and prayers. Anne 9

12 Particularly for partners In the early phases your partner may want your help with making decisions about her treatment. Usually there is time to consider the range of treatment options, and even consider a second opinion if she wants one. Try to maintain a normal lifestyle and plan treatments around normal activities if possible. Go with her to some appointments, especially those first consultations with oncologists, radiologists, etc. Accept that at times she may not be coping as well as she normally does. Keep informed. Do not deny the situation. Support each other, be realistic. Marion Quality time is an important priority for women and their families and friends. As a partner, your time may also be taken up with your work and other commitments. With your partner, you might consider who could help your family with the more day to-day tasks such as ironing, cleaning and cooking. This may help you to focus on supporting your family in a more productive way, like spending time with your children. If you and your partner need help ask for it. Friends are usually not sure how to help, and most would appreciate being asked to help out in a practical way. Your GP, a breast care nurse or hospital social worker may be able to assist with information on childcare or household help. It is easy to get caught up in the routine of treatment, especially if the stresses of family life or work life continue. Spending time as a couple having a coffee together or a weekend away can give you both time to unwind and connect. Make sure you build in special experiences around her cancer treatment regimes. These can usually be modified to accommodate personal plans. Planning a weekend away or a family holiday together gives you both something to look forward to and it is important that you make time to enjoy your life together. Don t forget to take lots of photos. 10

13 Some couples are able to discuss their personal feelings with each other. Talking about their concerns gives couples the opportunity to support and comfort each other. Most women are concerned about how their partner is coping. Many express relief if their partners do share their feelings with them. It might be useful to think about the right time to talk, perhaps when added pressures are not distracting you. This may be on a weekend away, when the children are staying with friends or when you re taking a walk together. Be strong but it s okay to share how scared you are. Helen It is okay to be honest. Do not feel you have to step on eggshells to avoid conflict. Be real in your relationship. Nicola Some couples find relationship counselling can help them to share their feelings and come up with strategies for dealing with the disruption that secondary breast cancer brings to their relationship and their family. Your GP can refer you to a local counsellor. It is a good idea to think about what you need, as a partner, to help you get through the tough times. You may simply need to take time for yourself, particularly if you re feeling overwhelmed. Do seek your own counselling or at least find someone to talk to. You are going to go through a roller-coaster ride with your loved ones and it is not going to be easy for you either. Do not expect to be able to cope with everything all the time. Nicola 11

14 Support and information for partners, family and friends Where to find support for yourself For more information about secondary breast cancer, visit If you would like to speak to someone about how you are feeling and coping, your GP can suggest options for you. The Cancer Council Helpline ( ) is a free confidential national service for people with questions or concerns related in any way to cancer. You can talk to a specially trained cancer nurse who will also tell you about support programs and assistance schemes available for your loved one, your family, and for you as a friend or relative of a woman with secondary breast cancer. Cancer Australia s website has a section for partners of women with breast cancer, which was written by men, but is helpful to all partners, family and friends of women with secondary breast cancer. When the woman you love has advanced breast cancer is a helpful CD especially designed for male partners, however, it is useful for others supporting women. Phone or for a copy. Mensline ( ) provides telephone counselling for men through their 24-hour telephone service. The website is very helpful for teenagers experiencing a range of emotions while dealing with their mother s breast cancer experience. 12

15 More from Breast Cancer Network Australia The Inside Story, a supplement to Breast Cancer Network Australia s free quarterly Beacon magazine, focuses on issues related to women living with secondary breast cancer. Anyone can subscribe phone , visit or beacon@bcna.org.au Hope & Hurdles is a comprehensive pack of information designed for women living with secondary breast cancer. Women can order their copy by phone or online Breast Cancer Network Australia s online network has online groups for women with secondary breast cancer, and for partners and supporters. Join the online network if you d like to connect with others in a similar situation: Thank you for your patience, the chats, the reminiscences, cuppas, tears, laughs and hugs when I needed them. I thank you all for your individual support on this journey. Meg Breast Cancer Network Australia thanks the women with secondary breast cancer who provided the direction, quotes and photos for this brochure. 13

16 Breast Cancer Network Australia 293 Camberwell Road Camberwell Victoria 3124 Australia