Having breast cancer is probably going to affect the way you lead your life, both during and after treatment. You may feel a wide range of emotions when you are told you have cancer and when you are going through treatment. The reactions of people close to you, such as friends or relatives, may also affect you.
There may be aspects of your life you decide to alter as a result of having breast cancer. Some things you may have to change, and for these you need to make some adjustments.
Practical, emotional and psychological supports are all available for someone who has breast cancer, as well as for friends, partners and other relatives, although not everyone needs this.
Talking about breast cancer
How can I find someone to talk to who has been through something similar?
There are several ways you can find support or share your experiences, feelings, hopes and fears with people who may have been in a similar situation.
• By making contact with a local breast cancer support or self-help group. Many areas have these and your breast care nurse can provide you with details of what is in your area.
Some groups are only for the person who has breast cancer but many will include relatives and friends too and there are special support groups for younger women with breast cancer.
Some groups are for women with secondary breast cancer.
Group activities vary from regular meetings, perhaps with a speaker, to social events. How often a group meets and the time of day varies from group to group. Regular telephone support groups that enable people to be in touch without having to travel, are run by Breast Cancer Care.
• By speaking to someone on the telephone. There are organisations that provide information over the phone about breast cancer and its treatment. They have trained staff who can give you the time and space to talk, as well as trying to help you to find answers to any questions. They can also help you to work out the questions you would like to ask your doctor, for example. If you choose to telephone such an organisation you don’t have to give your name. Some organisations will call you back to save you the cost of a long phone call; others operate a free phone system.
Some services also provide support by email. Most of these services will employ the same staff as the telephone staff to answer your questions. There may be a delay of a few days before you get a reply.
Increasingly organisations are exploring the use of on-line discussion boards or ‘live’ Internet talk. This does not mean you join a group unless it is a closed group and you all agree to participate; rather it is another way of receiving one-to-one immediate support and information through typing rather than talking.
• By surfing the Internet. You will find thousands of different options here. It is really important that you carefully check who is putting out the information. If it is a person who does not have a recognised qualification in cancer care but has their own experience to share, you should be aware that there is no medical back-up for the site and that what you are sharing are personal and not professionally endorsed opinions.
• By asking at the hospital where you go for treatment. Some hospitals know of local people who have been treated there or who attend clinics for check-ups, and who are willing to come in and talk with you.
• By speaking to someone who has had breast cancer. Some organisations offer ‘peer support’ – they train women, and men, who have had different types of breast cancer and who are of different ages, to offer support to other women and men who are going through a similar diagnosis or experience. This is not counselling or a formal relationship, more a supportive time you can spend either face-to-face or on the phone with someone who has been down a similar path to the one you are now on.
• By going to a cancer help centre. Increasingly, there are places that offer ‘retreats’ for people affected by cancer where you stay for a few days or a weekend. You could find out about these on the Internet or perhaps from your cancer treatment centre. Do check out carefully what they offer as some offer activities such as yoga and gentle massage while others offer cleansing diets and ‘detoxification’ methods. While the former may be fine for you, the latter kind might not be helpful depending on your treatment, progress through the treatment plan, side effects you have or might have and so on. It is always advisable to check with your oncologist before embarking on a retreat programme. Most places that offer retreats charge for their services so check the cost first. Some may offer reduced rates in certain circumstances.
I’ve got breast cancer. Should I talk about what is happening or not?
That is for you to decide. Some people choose right at the start to talk openly and honestly to their partner, other relatives or close friends or work colleagues. Through this they are able to share the feelings they experience and can gain support and strength to cope with what is happening. Other people prefer not to talk about what is going on. They may cope well with what is happening but sometimes it can be hard for others to deal with their silence. Partners, relatives and friends will have their own feelings about what is happening to you and how it affects them, and problems with communication can arise if your breast cancer becomes a taboo subject that must not be mentioned.
I want to talk about things but it’s hard to know where to start. What if I cry and can’t stop?
Many people think that if they allow themselves to cry in front of someone else they will cause greater distress to themselves and to the other person. While it can be very painful to let yourself cry ‘in public’ it can be very beneficial in the end. Bottling up feelings means they will probably force their way out sooner or later and in a way that might be less within your control. Having breast cancer is an extremely emotional experience but sharing those feelings, rather than keeping them all inside, can relieve some of the tension. It may help you to face whatever lies ahead with support and understanding from people who are important to you.
Some people say they are frightened to cry in case they can’t stop. No one cries constantly and there are no rules about when it is OK to cry and when it is not, although in some cultures some types of emotional expression are less acceptable than others.
Some people say they cry alone and that feels right for them. It can also help you if you write down some of the thoughts in your head at the time. Writing like this is another way of releasing tension and of helping you to name what you are fearful of and sad about.
This in turn can help you recognise if you would like some help to cope better or maybe to find specific ways of dealing with particular problems. Some people like to keep what they have written in the form of a journal or diary, while others may tear it up and throw it away.
It is at this time that some people contact a breast cancer support and information organisation. Talking in private on the phone to a person you don’t know and aren’t likely to meet gives you the chance to practice what you might want to say to friends or relatives. This can make it easier when you do talk with them.
I am 48 and have just been told I have breast cancer. What should I tell my children?
Children are likely to notice if you are not quite your usual self, and may feel they are in some way to blame if they are not given any sort of explanation. Exactly what you tell them will probably depend on their ages, but as a general rule it is likely to be better for the whole household in the long run if you can tell them as much of the truth as possible.
You may wish to tell it to them gradually over a period of time, or you may tell an older child more in the first instance than a younger child, although the older child may then tell the younger one anyway. If you are going to have treatment that could make you poorly, or if you are going to be in hospital, you may also find it helpful to tell your children’s teachers, so that they are aware and can help to support the child in their class.
I am in for some lengthy treatment. What should we tell the school?
It can be really helpful for the children if their teachers are told exactly what is going on. Sometimes children use school as a place where they don’t have to think about cancer and what is going on at home. No one would ever know that anything was happening. Other children act out their anxiety at school and their behaviour may change. If teachers know what is happening at home they can support the children as needed and this can relieve pressure on the whole family.
How much should the children know about what is going on with my breast cancer treatment?
This really depends on the age of the children. One of the most important things for a young child is that they feel that everything continues as normal and that their lives are the same as before. To help achieve this, it is important to maintain their routine as far as possible. Perhaps other mums at school or day care could help by picking up your children, for example, to give you some quiet time, especially if you are having daily radiotherapy or are in the middle of a course of chemotherapy.
Should I tell my teenage children what is going on with my breast cancer?
Teenage children, particularly girls, may be worried not only about their mum or dad with breast cancer but for themselves too. They may need some special time alone with you where you do some mother/father and daughter activity that gives them the time and opportunity to talk if they wish to. It can help if their closest friends’ parents know what is happening in case their teenagers raise the subject.
Whilst many teens won’t talk even if asked, they will certainly talk with their friends, perhaps using Internet chat rooms or phone calls.
I am worried about the impact my illness is having on the children. Is there any help for them?
There are organisations that offer information for families and teachers and produce booklets and information sheets. Some also provide support groups by telephone or Internet for children, including teenagers, whose parents have cancer.
If I have breast cancer, how do I know if my daughters are likely to get it?
The vast majority of breast cancers happen by chance and only a very small number of cases (less than 10%) are genetic and may run in families. Whether your daughters are at any increased risk will depend on how old you were when you developed breast cancer and whether there are any other close family members affected as well.
Even if you do carry a faulty gene, you won’t necessarily pass it on to your children, who would only have a 50:50 chance of inheriting it. If your daughters are at an increased risk, there are things that can be done, such as screening them from an earlier age, for example using MRI scans.
Next: Practical Help
