At the same time as you need to deal with it, your family needs to deal with it as well. There’s no easy way of telling them that you have advanced disease and what it is. – Nina
Telling friends and family that you have metastatic breast cancer is not easy. Even explaining what metastatic breast cancer means can be difficult. As well as your own emotions, you have their reactions to deal with. You may find it hard to answer their questions, or to raise subjects that are important to you but which they seem reluctant to talk about.
If you have a partner, they may have been with you at the time of your diagnosis. If not, they will probably be the first person you tell. As your partner is likely to be the person who supports you, it is a good idea to be completely honest from the start.
Changes to your relationship are inevitable. The challenge of living with a life-limiting illness will often bring couples closer together but it can also drive them apart. While you might be feeling guilty about needing more care and support, or worrying about becoming a burden, your partner might be feeling equally worried about letting you down, or guilty about thinking about a life without you. These kinds of emotions are not easy to talk about, but the more you communicate, the better your chances of feeling like a team. It can often be helpful for you partner to have someone they can talk to about their own concerns at this time. There may be social workers or psychologists at your treatment centre, or your partner’s GP may be able to refer them to a psychologist or other counsellor. Your partner can also use the BCNA telephone support service.
The thought of telling your parents about your diagnosis can be very daunting. Depending on their age and individual circumstances, they may already be coping with their own medical problems and may even have been relying on you to help them live in the community or supported care.
It is devastating for a parent to hear that their adult child has a potentially life-threatening illness, and could die before them; it is against the natural order of things.
I was living in a different state and my mother was very elderly, so I asked my sister to tell her about my diagnosis. I knew how sad and shocked she would be. I then spoke at length to Mum on the phone. One of the first things she said to me was ‘Daughters are not supposed to die before their parents’, at which we both dissolved into floods of tears. – Becky
Your parents do not have to be told about your diagnosis immediately – it is not an emergency. You may choose to share information about your diagnosis in stages and give them updates if your condition changes. Remember that your parents’ attitude to cancer may date back many years, or even decades, so it is important to check their level of understanding and let them know about advances in treatment.
It can be helpful to think about local support and people they can talk to after you tell them about your diagnosis, particularly if you have to break the news by phone.
My parents were in their early 70s when I was diagnosed with metastatic breast cancer. Before I rang to tell them, I rang their minister (they are regular church goers), explained who I was, that I lived a few hours away and that I had been diagnosed with advanced breast cancer. I asked him to visit them in the near future. After phoning my parents with the news, I sent an email to them and to my siblings explaining the diagnosis, treatment plan etc., so that they all got the correct information. I explained that they were welcome to ring me, but hoped they would understand if I was not up to talking. – Denice
You might decide not to tell your parents about your diagnosis – perhaps because your relationship with them is complex or you don’t believe they could cope. You need to do what feels right for you – and, of course, you may come to think about this differently over time.
Tips for talking to your parents
- Provide clear, concise information that is easy to understand
- Be prepared to repeat information
- Be prepared to explain to them the advances in breast cancer treatment over the years, and that some people can live for many years
- Give them copies of BCNA brochures such as She has secondary breast cancer – how can I support her?
- If they use the internet, send them links to some reliable websites
- If you have brothers or sisters or other family members who are nearby, ask them to spend some time with your parents to provide support, or even be there to help break the news if they are able.
For many people, the most distressing concern is their children. We all want to protect our children from pain and sadness and the thought that this diagnosis will hurt them can cause enormous grief. It is hard. You don’t deserve it and nor do they. However, you can make a difference to how this affects your children and there are things you can do to make this easier for them.
Family and friends could respond to you in unusual ways. I had to remind myself to be patient with them. They were in shock on hearing my news too. – Hui-Lin
Even when you are talking to adults, you may not always get the reaction you hoped for when you tell them that you have metastatic breast cancer.
Worrying about what is going to happen and the fear of losing you can affect how family and friends relate to you. Your diagnosis may also make them think about their own mortality. Often, people with the very best of intentions have no idea what to say. They may be so afraid of saying the wrong thing and upsetting you that they don’t say anything at all, and so seem to withdraw from you at the time you need them most.
You may need to take the lead in talking about how you feel and what you want or need. It might seem unfair that you should have to worry about other people’s emotions when you are struggling with your own, but once they see that you are not your cancer, that you are still the same person they have always laughed and joked with, complained to and talked to about the future, your relationships are more likely to continue to flourish.
Some people have such negative preconceived ideas about my illness and prognosis. Everyone expected me to die very quickly after my diagnosis. The only one that was positive was my medical oncologist and luckily he was the only one who got it right!
Family and friends sometimes would like me to participate in something that I just don’t have the energy for. It’s hard for me to explain this to them without them starting to worry about me. Except for the walking stick, I look pretty okay, which makes it difficult sometimes. Some people just don’t get it.