Younger women with secondary breast cancer

Medically speaking, we tend to describe ‘younger’ women in terms of the menopause. ‘Younger’ women are usually classed as those who have not yet been through the menopause and are typically in their 20s, 30s and 40s.

Although secondary breast cancer is a devastating diagnosis for women of any age, as a younger woman, you may well be facing very different issues compared to women at later stages of life. You may be enjoying the independence of single life or dating. You may be looking after a young family or planning to start one. You may be focused on your job or career ahead, buying a house or paying the mortgage and looking forward to many holidays and happy life events. Undergoing constant treatment and having so much uncertainty about the future can make it feel like all of your priorities and plans are suddenly forced to change. It may feel like lots of life decisions must suddenly be made much sooner than you had ever anticipated.

Receiving this diagnosis at a younger age can also be an incredibly isolating experience. When meeting other women with secondary breast cancer, you may find that they are often older than you. Other people may also find it hard to believe or accept that you can have a life limiting diagnosis at such a young age. This can be extremely frustrating.

Here, we provide a range of information which may help you to deal with some of the issues faced by women diagnosed at a younger age.

We also have a range of stories of younger women with secondary breast cancer, based on real life experiences, within our Case studies section.

Family life

The time following your diagnosis may be a period of much readjustment for you and your family. Juggling what might already be a hectic family and work life alongside the physical and emotional demands of your cancer and treatment can feel impossible.

Readjust. You may welcome the normality of carrying on as usual with things like the school run or your work commute but try and be realistic with what you are able to do and the energy supplies you have. Making adjustments to the family routine and who does what and when can help you all to establish a new, more realistic ‘normal’. Sharing out tasks and responsibilities, for example, or having more relaxed routines around treatment cycles can help you all to feel better able to cope.

Ask for and accept help. This does not mean you are losing your independence or not coping. Your loved ones, whether your partner, children or other family members will want to help and may find it a comfort to be able to do something useful and practical for you. In accepting help, you may feel more able to continue as normal.

Communicate. Telling your family how you are feeling and what you are going through can help to open up the channels of communication for everyone. Rather than worrying one another, this may in fact help you all to feel supported and able to talk through worries together.

Telling your children about your breast cancer can seem like the hardest thing to do. However, children can be very perceptive and may sense when something is wrong. It is often best to be open and honest to prevent them form imagining the worst. It can be less frightening for them to know what is going on and to be able to trust that you will be honest with them. This can be true for young children right up to teenagers. Each family situation is unique, however, and you will know your children best. There are lots of resources available which are designed to support families in discussing cancer with young children. See our Support for others section for further information and guidance on how you can support family and loved ones to support themselves. It can be harder to find supportive resources for older children. Schools are also often able to provide support for pupils who are struggling emotionally so it is a good idea to speak to them early on and ask for extra support if you think this might help. This is particularly important if your child has upcoming exams. Letting your child’s school know what is happening will allow them to put the appropriate support and measures for extenuating circumstances in place.

See our section on Support for children and teenagers, which includes guidance and resources to support parents in telling their children about secondary breast cancer.

Macmillan also have a wide range of information and guidance on their website related to talking to children and teenagers about cancer.

Single life & dating

If you are single, you may find it difficult to know who to turn to when times are hard or when there is bad news. There may not necessarily always be that ‘one’ person who you know will be there. For some women this is no issue at all and they feel able to seek support from close family and friends. For others, they may struggle between wanting to maintain their independence and also needing support, whether emotional, financial or practical. However, building a support network around you can in fact help you to feel more in control and to maintain your independence. Asking a friend or family member for support, whether coming along to an appointment or helping you on a difficult day, can help you to recharge and rebuild your emotional strength. Valuing your independence does not necessarily have to mean going at it alone. Catch up with and confide in close friends – they will value spending time with you just as much as you value their support.

If you are dating, knowing how much to share with a new partner can be very difficult. You may choose to be up front about your secondary breast cancer straight away, or prefer to get to know this person a little before letting them into this very personal part of your life. You may worry that this will change how they feel about starting or continuing a relationship with them. However, it can be difficult to progress in a relationship together without total honesty.

You may also find it helpful to read our section on Relationships, sex & intimacy.

Fertility

Fertility can often (though not always) be an important concern for younger women faced with a cancer diagnosis.

You may have always known that you don’t want to have children, in which case being faced with lots of information and questions about your fertility because of your age may feel irrelevant and frustrating. Don’t be afraid to let your doctor or nurse know that this is not a focus for you.

Before your diagnosis, you may have had vague or definite plans to start a family or to have more children at some point in the future. Being diagnosed with secondary breast cancer may have suddenly caused you to question these plans or to make a decision sooner than you had intended.

You may feel that having a baby is no longer the right decision for you and that you need to focus on your own health and treatment. This may be a difficult decision to come to, especially if you had always expected to have a family at some point in the future. It may help you to reach out and access some psychological support to help you to process the emotions you are going through. Please visit our section on Psychological well-being for further information & guidance.

However, you may still very much wish to have a baby at some point in the future. This does raise a number of major challenges in secondary breast cancer, since treatment is usually continuous and doctors normally advise women not to get pregnant whilst undergoing treatment as it can affect the baby’s development.

Another important consideration is the effect of your previous and ongoing treatment on your fertility. For younger women who haven’t gone through the menopause, several of the treatments used in breast cancer can affect their ability to become pregnant (their fertility).

Getting realistic and expert advice

If fertility and family planning is an important concern for you, it is important for you to discuss this with your doctor. They will be able to provide you with realistic information and advice that is suited to your situation.

The Royal College of Obstetricians and Gynaecologists recommend that pregnancy in secondary breast cancer should be advised against due to the risks of stopping or delaying treatment [1].

However, this is a decision for you to make in discussion with your doctor and in consideration of your own situation and all of the relevant information.

Work

Your job or career may feel like a huge part of your identity. It may be something that you have worked hard to achieve and have plans to continue for many more years. The thought of being forced to give up work may raise a range of emotions, from worry and fear to sadness and grief.

If you are able to continue work, you may still have some difficult decisions to face. When it comes to opportunities for promotion or further development, you may be struggling to decide whether this would be time and energy well spent, whether you will be able to cope or whether you will be taken seriously. If you feel able to, seek advice from your employer or trusted colleagues. Your cancer does not mean you cannot continue to pursue your ambitions but you may find it has caused you to re-assess your work-life balance or pace of work.

Get support. Make sure that you are getting the right support at work. There are lots of things that your employer can do to support you and help you to continue to work around treatment and hospital visits. Seeking professional financial advice can also help you to make decisions about your pensions and savings which may suddenly seem much more relevant and important for you and your family.

Do what is right for you. There is nothing to say that work can’t or shouldn’t be a priority following a diagnosis of secondary breast cancer. You and your family may be financially reliant on your income. Money aside, this may be where you want to focus your energy and an important part of carrying on with life.

See our section on Employment & finances for further support and guidance.

Dealing with uncertainty

When faced with the uncertainty that comes with a diagnosis of secondary breast cancer, it can be hard to know whether to live for the moment or to try and look ahead. At a young age, it can be very difficult to come to terms with the potential loss of a future you had planned for.

It may help to focus on the present day and live for the now rather than planning too far ahead or worrying about the future.

On the other hand, some people may find it helpful and comforting to plan ahead, to make sure that they continue to do the things they want to do or to make sure that practicalities such as financial arrangements are organised.

There is no right or wrong way of doing things.

Allow yourself to do whatever feels right for you and your family and don’t be afraid to reach out for psychological support if you find yourself struggling.

See our section on Psychological well-being for further information and guidance.

Connecting with other young women

You may find it helpful to speak to and share experiences with other women of a similar age who are going through what you are going through.

Some charities and services run support groups and events for younger women with breast cancer. Breast Cancer Now run support groups across the UK for women (of all ages) with secondary breast cancer. They also host annual two day events called ‘Younger Women with Secondaries Together’, providing a space for younger women to share their experiences of secondary breast cancer, to get support and to hear from a number of speakers on a range of relevant topics. Accommodation, meals and refreshments are all provided free of charge. To find out when the next event will be held in your region (or the region closest to you), please contact secondaryservices@breastcancernow.org or call 0345 077 1893.

Breast Cancer Haven also hold support groups for younger women diagnosed with breast cancer. Though these are not specific to women with secondary breast cancer, it may be useful to meet others of a similar age and discuss shared concerns or experiences. You may also find that other younger women with secondary breast cancer attend. All of Breast Cancer Haven’s support groups are listed on their website. Click on the region closest to you and scroll to find their ‘Younger women’s support group’. If you have any concerns about attending, contact the front desk team of your local service via their support group page to ask for further information.

Some Maggie’s centres, located across the UK, hold support groups specific to secondary breast cancer. Visit their website to find a centre near you and explore the wide range of support on offer.

The Young Survival Coalition is an international organisation based in America which provides information and support specifically for women under the aged 40 and under who are living with breast cancer. Their website has various features allowing young women to connect with each other, from a discussion board and private Facebook group to a ‘virtual hangout’. They also share information and discuss topics via their Twitter page

The Younger Breast Cancer Network (YBCN) is a network of younger women diagnosed with breast cancer who come together to share their experiences on Facebook. YBCN was started by one young woman who, when diagnosed at the age of 36, felt isolated and scared. You can read more about her story here. Their Facebook page is home to a wide range of private chats where young women discuss topics such as research and living with secondary breast cancer. They also share a range of information and support via their Twitter page.

Macmillan have an online forum specifically for younger women with breast cancer, called ‘Breast cancer for the under-50s’ whilst Breast Cancer Now have an online forum for ‘Younger women and families’.

Further information

The Young Survival Coalition website has a wide range of information for younger women diagnosed with breast cancer, including a section on living with a metastatic breast cancer. Their ‘Metastatic Navigator’ guide aims to answer the questions which younger women with secondary or metastatic breast cancer might have.  

Breast Cancer Network Australia also have a section on their website providing a range of information and advice for young women diagnosed with metastatic (secondary) breast cancer.

Shine Cancer Support are a charity who provide a wide range of online and face to face information and support, specifically for young people who are living with cancer.

Page last updated: April 2020