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Young women and metastatic breast cancer

There have been many challenges. Probably the biggest is learning to live with the reality of it all. – Chelsea

Although metastatic breast cancer is a life-changing illness for all women, young women can experience a unique set of challenges and concerns.

From a medical point of view, women with metastatic breast cancer are considered ‘young’ if they have not yet reached menopause.

If you are in your twenties, thirties or early forties, you may be facing very different issues compared with women in later stages of their lives. You might be enjoying single life, focusing on finding a partner, or partnered/married with a young family. You may just be starting out in your career, pursuing further studies, or spending time travelling. You might be saving for your first home, or living in a share house, or sharing a house with your partner. You may be thinking of having children – or not thinking about it, if that is something you planned to put off until later. You may be pregnant or caring for a young family, either with a partner or on your own.

There are many crucial changes and milestones happening in a young woman’s life. And as a young woman, a diagnosis of metastatic breast cancer may feel especially frightening, confronting and isolating. You may be worrying about issues such as:

  • How are my family and friends going to take this news?
  • How much should I tell my children about breast cancer?
  • What impact is it going to have on my relationships?
  • Can I continue to work?
  • What about my future?

This page provides some clarity to those questions. You can navigate to a section using the table of contents below. 

Emotional wellbeing and caring for yourself

A diagnosis of metastatic breast cancer can have a powerful emotional impact on you. You may feel overwhelmed at first with a sense of fear or anger at the diagnosis. As a young woman, you may feel a deep sense of grief about your opportunities being narrowed – the chance to pursue your career, to have children or grow your family, or to travel and explore. It can feel sometimes like the cancer has robbed you of hope and a future, just when you have been starting out, or hitting your stride in life. These feelings are normal and understandable.

Over time, most people come to realise that hope hasn’t gone. Your hope may now centre on long periods of disease control and feeling well, or enjoying a trip or a special event, or quality time spent with family and friends.

I see a psychologist regularly. I do Pilates and boxing, sometimes I do some meditating. I don't let little unimportant things bother me so much anymore. Your whole perspective on life changes. – Charlotte

Understanding how to care for your emotional wellbeing can help you to feel more optimistic and in control.

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Building your support network 

People with cancer like to talk to other people who are going through similar things. - Marie

Looking after your emotional wellbeing is easier if you have a strong support network. Friends, partners and family are a crucial part of that support network. Many women find that connecting with other young women with metastatic breast cancer is also very helpful.

I am 39, and having metastatic breast cancer can sometimes feel very lonely. I need someone I can talk to openly and honestly about what I'm feeling. - Kate

Connecting with women through support groups can help with building new friendships, sharing feelings with someone in a similar position and finding a different perspective. You can search for an all-ages support group in your area on BCNA's 'Find services and support groups' page.

Many women tell us that it is difficult to find fact-to-face support groups where they can connect with other young women with metastatic breast cancer. You may find it easier to connect through online groups, such as BCNA's online network.

Alternatively, the Young Survival Coalition's website specifically focuses on the needs of young women with breast cancer. Their website includes discussion boards where you can connect with other young women for support. Access the Young Survival Coalition's forums

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Relationships 

Metastatic cancer is not easy for anyone - family and friends included. There are many ups and downs along the way, and there are times when it's not easy to admit that you do need help. Many like to put on a brace face. - Kay

Relationships with partners, children, friends and family are important sources of support, but sometimes it can be hard to talk to people about your disease or how you are feeling. You might find that some people don't know what to say to you, or what they can do to help you. It is helpful to be open and honest about how you are going and what you need. 

Communicating openly with trusted people in your life, and allowing them to help you where they can, can give you more energy for doing the things that matter and that give you pleasure.

It is really important to be self-aware and know when you need to reach out to talk to someone professionally, instead of putting on a brave face for everyone around you, that everything is fine. - Ros 

Single and dating 

If you are single, you may not have 'one' person you turn to in times of need. Instead, you might draw more on your connections with parents, relatives and friends. Some women find that spending time with their parents brings the comfort and support they need. Others so value their independence that they would rather not have to rely on parents for care and financial support. For independent young women, it can be tempting to avoid asking close friends or family for help as you don't want to feel like a burden. It can be helpful to think of others' help as a 'gift', allowing others to show their support for you. 

When I need some help with feeling down or depressed, I like to have a chat with some of my close friends. - Jasmine 

If you are feeling up to it, it is nice to have regular catch-ups with close friends - even if someone just comes to visit for a chat at home. This can be something to look forward to, as it offers companionship and support.

As a single woman, new relationships are a challenge, especially having to manage information about my cancer to potential new partners. - Amy

If you are thinking of dating, it can be helpful to talk with friends and family about opportunities to meet new people. Dating or starting a new relationship can be daunting at times. You may have a lot of questions and worries, such as when and how to tell a potential new partner about your diagnosis. 

Sometimes you might find that if you are stressed or feeling down, it can make it more difficult to start a new relationship. A counsellor or psychologist may be able to work through these issues with you and help to clarify your needs and values. 

Partners

Always remember to ask how your partner is doing. - Georgia

A diagnosis of metastatic breast cancer can have a devastating impact on your partner, especially when you might just be starting a new life together, or caring for a young family. Your partner may feel helpless or uncertain about how to help, and may find it hard to express their own feelings about the situation. Sometimes partners can be afraid that talking about it will be too painful (with thoughts like, 'I have to hold it together!'). If you have young children, your partner may have added feelings of grief and anxiety about the future. 

Communicating openly and honestly is usually the best way to keep your relationship healthy. You should both feel able to express your fears and discuss your individual needs and your needs as a couple or family. Trying to keep strong feelings to yourself is hard work. 

Recognise that your partner will need space at times. Having some personal time will help your partner have more energy to be there for you. It is also helpful to schedule some regular time out for yourselves as a couple. This will help to strengthen your communication and the quality of your time together. 

There are many resources that can help you and your partner. 

  • Talk to your GP, social worker or oncologist about services and supports available to you and your partner. 
  • If you are in a same-sex relationship, it can help to seek out health professionals who are sensitive to and respectful of your situation. It is important that your partner is involved in your treatment and care. If you feel that your medical team is not supportive, then it is probably a good idea to look around for other professionals. Some couples also find it helpful to talk to a counsellor or join a same-sex support group. 
  • If you are looking for a resource to help your partner in understanding your needs, you can download BCNA's booklet She has secondary breast cancer: how can I support her? 

Sexual wellbeing and intimacy

The breast cancer journey has helped put lots of things into perspective. It has made us value each other more, and made us more open to sharing ourselves physically with each other. - Rose

Sexual wellbeing is an important part of life for every woman. Your sense of sexual wellbeing is unique to you, and it is shaped by factors such as desire, self-esteem and body image; your physical and emotional wellbeing, as well as your libido and levels of sexual satisfaction.

Sometimes you might find that physical side effects and symptoms can make it difficult to have interest in sex or to feel comfortable and confident in your body. This can include concerns such as vaginal dryness, pain and fatigue and changes to your body such as scars and loss of breast tissue.

Sometimes the emotional impacts of metastatic breast cancer can also impact on your sexual wellbeing. You may feel a loss of confidence, have concerns about your body or appearance, or feel anxious or upset. Very often, it is a combination of different factors that impact on your libido and sexual intimacy. This can place a strain on existing relationships, or make it more challenging to establish new relationships.

Many women experience these kinds of concerns, and it can be reassuring to know that you are not alone. The good news is that there are things you can do to empower yourself and manage challenges with your sexual wellbeing. For in-depth practical advice and strategies to help with building up intimate relationships after a breast cancer diagnosis, you can download or order BCNA's free information booklet, Breast cancer and sexual wellbeing.

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Parents

My parents look sad when I'm sick and it's really hard to see. I don't ask 'Why me?', but I do worry about them. - Maddy

The thought of telling your parents about your diagnosis can be daunting and upsetting. To help in the process, you might choose to share information in stages and give them updates if your condition changes. 

Depending on your circumstances and your relationship with your parents, you might decide not to tell your parents about your diagnosis until you have all the information you need. You need to do what feels right for you - and of course, you may come to think about this differently over time. You might want to talk to a health professional such as a counsellor to get some help around talking with your parents about your illness. 

Sometimes it may become necessary to move back with parents for a time so they can care for you and give some financial support. If you require additional assistance at this time, it can be helpful to connect with your GP or social worker who can link you and/or your parents to local services and supports.

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Talking to your children 

There are no easy answers on how to talk about advanced disease with your family - it's a fine line between 'protecting' your kids and being honest. - Hillary 

If you have children, especially young ones, concern about their welfare and how they will take the news of your diagnosis can be the most distressing issue of all. You will undoubtedly worry about how they will understand and accept your diagnosis and treatment. It may be difficult for you to find the right words to say to them, and to know how much to to tell them. Discussing cancer with children, and how they react and cope, will be influenced by their age and maturity.

For advice on how to tell your children about your metastatic breast cancer diagnosis, you can order BCNA's free resource Hope & Hurdles. It contains information and tips for every stage of childhood, from early childhood to adolescence. 

Understanding metastatic breast cancer: a comic for children aged 8-12 years of age can also help explain your diagnosis to your children or grandchildren. In it, the Medikidz superhero characters take two children on an adventure through the human body to learn about what happens after a metastatic breast cancer diagnosis. You can order Understanding metastatic breast cancer as a free, hard-copy comic that will be sent by mail.

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Employment and returning to work 

For many young women, work can be an important source of meaning, income and wellbeing. You may want to keep working for as long as you can because you enjoy your job or because it gives you financial security. Or you may want to give up work to concentrate on other things in life. Sometimes you may have to give up work to concentrate on other things in life. Sometimes you may have to give up work because you are too unwell. Every person's experiences and priorities are different. 

I took 18 months leave from work. I wanted my hair to have grown before I went back. I also reduced my working hours to better suit me and my family. - Ellen 
It has been hard to give up my career to focus on treatment. - Dani

Planning to return to work 

If you are planning to return or stay at work, your employer can help you by making adjustments to your work duties, or changing your hours. Although it may sometimes to feel uncomfortable to disclose a diagnosis, the benefit of telling your employer is that they can assist you in making any adjustments that are needed to help you. It is important to communicate regularly with your employer, and to agree on a return to work plan if you are returning after a period of leave. It is also important to find out about your entitlements and rights. 

Things you can do:

  • Establish a return to work plan with your employer and review it with them regularly. 
  • Look at options for flexible/part-time work arrangements. 
  • Notify employers in advance of any leave you may need to take. 
  • To assist with memory and concentration, take notes and use a calendar and diary regularly. 
  • Keep a diary of meetings, tasks, important conversations with your employer, and any leave you have taken. 
  • Some employers offer employee assistance programs. These programs provide short-term counselling and emotional support, free of charge for employees. 

BCNA's booklet Helping a friend or colleague with breast cancer contains a section particularly for the workplace that provides some helpful suggestions for managers and workplace colleagues. 

Support with discrimination and other workplace issues

Most employers are supportive when an employee is diagnosed with breast cancer. However, if you are worried that your employer is not understanding, or you are in danger of losing your job after disclosing your diagnosis, you can talk to an adviser at the office of Fair Work Ombudsman. They can provide advice on your rights and your employer's obligations, and also investigate any complaints. You can talk to an adviser online at the Fair Work Ombudsman website, or by calling 13 13 94. 

  • If you are experiencing workplace bullying or harassment, you may want to contact the Fair Work Commission, which deals with issues such as bullying and unfair dismissal. You can visit the Fair Work Commission website or call 1300 799 675. 
  • You may also consider talking to an employee or union representative in your workplace. 
  • Download Cancer Council's free booklet, Cancer Work & You, which includes some useful information on your rights, as well as some practical tips and suggestions. 

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For more information: 

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