THERE IS NO right time or right way to tell someone you have breast cancer. There are no rules about who needs or deserves to know, or how soon you have to tell them. It is your decision who finds out and when. This section draws on (among other sources) a great blog called ‘the small c’, written by a woman who initially kept her cancer diagnosis relatively quiet while she went through treatment.
Why tell anyone at all? First and foremost because it will help you to get emotional support from people who love you and they can also take on practical tasks when you’re not feeling your best. Sharing the news with others may be an important step towards going beyond ‘denial’ and accepting your cancer diagnosis. It is also lovely to get messages, cards and flowers from friends and family, and know that you’re not going through this alone.
Liz told her immediate family and friends on the day she was diagnosed, and then told the world via Twitter the next morning. She didn’t want to hide the fact that she had cancer, and she felt it would be fairly obvious once she lost her hair. She suddenly had a large network of friends to talk to online during the lonely days spent at home during chemo.
On the other hand, you may not want to tell everyone immediately, because you are still coming to terms with the news yourself. You may not be ready to deal with questions from well-wishers, such as ‘Do you need chemo?’, when you don’t yet know yourself how your cancer is going to be treated, and you may not want people discussing your private business among themselves. You may just want to tell a small, hand-picked ‘cancer circle’ (or even just one ‘cancer buddy’) who will be there for you through the good times and the bad, and be able to laugh with you about the embarrassments and ironies of cancer treatment. We hope that if you handle your cancer in a way they wouldn’t have done themselves, they will keep quiet because they respect your choices.
Whenever you tell people you have cancer, you will undoubtedly hear advice from people who mean well, but seem to do more harm than good. They may recommend a magic cure or diet, or tell you about their friends and relatives who have died from breast cancer. None of this is helpful. In our experience, you have to go through your own treatment journey before you are ready to hear about that of others. It’s may be easier to simply say ‘Thank you’ and then ignore their ‘helpful’ advice rather than try to explain how upset you are.
Perhaps against her better judgement, Trish kept her cancer diagnosis from her two sons (aged 26 and 23 at the time) until she had had her mastectomy and finished chemotherapy. The rationale at the time was that ‘the timing was bad’ (one son was travelling abroad and difficult to reach; the other was about to take university exams). Looking back, the main reason for delaying telling them was probably that she didn’t have enough spare emotional energy to support them as well as dealing with her own reactions. When she did tell them, they were relieved to find that the treatment had gone well and her prognosis was very good. But they told her they would have preferred to have known from the outset.
Another reason not to tell people is that you may have to support them, because they can’t cope with the fact that you have cancer. This can often happen with parents and older relatives. As you learn more about your cancer diagnosis and come to terms with it, you may find yourself doing emotional work to reassure others that your death isn’t imminent, that chemotherapy isn’t that bad, and so on. It’s important to keep some emotional energy to build and maintain your own comfort zone.
Our advice is to do what feels right for you at the time, which may not necessarily be what a friend or relative thinks you should do.
Here are some tips based on our experience and the advice we gleaned from websites when we were struggling with this challenge:
1. Decide upfront how much information you want to share, and don’t be pressurised to say more.
2. Try out different approaches until you find what works for you (e.g. face-to-face or email, ‘factual’ or ‘emotional’ emphasis). The first time will be awful, but it gets easier as you tell your story more and it gains coherence in a way that makes sense to you.
3. Find an appropriate time and place to share your news. You need a time when you won’t be interrupted to make phone calls and send emails, or perhaps arrange to go for a walk or meet in the park.
4. Write out what you want to say about your breast cancer (maybe one or two paragraphs), so you can copy this into emails and letters, or read it out over the phone. You might say only that you’re having treatment for breast cancer and leave it there, or you might want to share all the treatment details. If you’re not telling everyone, make it clear who you are telling and what level of confidentiality you would like people to follow.
5. If people want to hear more details about your cancer and ask questions that you don’t know the answer to, refer them to the Breast Cancer Care and Macmillan websites, which have excellent information leaflets and advice. It’s not your job to explain all the technicalities to everyone.
6. Once you have told someone, there will usually be a silence while they let the news sink in, and they may start to cry, which can then make you cry. Telling people you love that you have cancer is a very emotional thing to do. It is even harder if you have to tell them you need chemo, and harder still if you’re breaking the news that your cancer has come back. They will be upset, and you need to be prepared for this. It may be easier to tell one close friend or family member, and then ask them to tell the rest of your friends and family.
7. One of the first things people will ask is ‘What can we do to help?’, and you won’t have a clue because you have (hopefully) never had cancer before. Try to come up with a list of things beforehand. It may be as simple as sending a daily text to say they are thinking about you. You could ask people to walk with you every day, to keep an eye on your partner while you’re having treatment and take them out for a drink, or help out around the house by filling the freezer with food, doing the laundry or helping with pet care or school runs. It’s also important to remind people that you are still ‘you’ – you are not just a cancer patient and you (perhaps) still want to be included in all the gossip, meet up for coffee and be invited to parties.
8. Think about how you want to update people on your progress. You may choose to send periodic emails, or even write a blog (there are several websites, such as Wordpress, that are free to use). A middle ground is to use a website such as CaringBridge, a private site where your blog can be seen only by the people you share it with.
We were lucky – most of the people we told were wonderful. After their initial reaction of shock (swearing, crying and more swearing!), they were able to support us and our husbands when we needed it. We hope that the people you tell are just as sensitive and supportive. However, not everyone is that lucky, and you may come across the following negative reactions.
Some people will avoid you or withdraw completely. They may stop returning texts or phone calls, and may avoid you at work. Perhaps they just don’t know what to say or worry that they will say the wrong thing and therefore end up saying nothing. Alternatively, they may find it distressing to see you sick, upset or in pain (they may have looked on you as a parent figure or mentor, and unconsciously saw you as invulnerable). They may start thinking about their own mortality and whether they might get cancer which may all be too much for them.
If you want to stay in contact with someone who has blocked you, first start by acknowledging that you feel hurt, angry or rejected. Putting your reaction aside, here are some suggestions:
● Try phoning or emailing them. Tell them it’s not easy, and that you wouldn’t know what to do or say if they got cancer, but you still want to see or hear from them.
● Ask them to do little things to help you (see here), so they can feel useful and involved without having to think too much.
● Ask them if they want you to send them some information about breast cancer treatment and survival to reassure them that you’re not going to die tomorrow.
● Ask one of your other friends or relatives to talk to them and see if that helps.
Sometimes you may have to accept that this person cannot deal with your cancer diagnosis at this time in their life. This can be upsetting, especially if the person was close to you before your diagnosis. Remember, you’ve done nothing wrong and they are staying away for their own personal reasons, however unfathomable that may seem to you.
A newly diagnosed cancer is a talking point – but few of us want to be that talking point. As ‘the small c’ says on her blog:
I didn’t want to be talked about. Fact is, bad news travels fast. And some people are always going to gossip. ‘Hey, did you hear? Such and such has cancer.’ While I wanted empathy, prayers and love, I also wanted people to believe I would be OK, not that I was going to die from my cancer. Adding to the difficulty, I also understand that some people who I care about, and who I’ve trusted with confidential information, might need emotional support too, and will be inclined to reach out to other people, including people who I might not want to share the information with.
Friends may need to talk about you when you’re not there to help them cope with your diagnosis. You can ask them not to talk about you with people you don’t know or people you haven’t told, although it is impossible to stop gossip. When you do tell people, be explicit about who knows what. This is especially important if you are delaying telling children or certain relatives. It can be harder to hide a cancer diagnosis if you are having chemotherapy, or need palliative care or hospice treatment. That may be the time to send an email simply explaining what is going on, that you aren’t well enough to answer questions and will provide updates in the future. Giving your friends and family a regular update via email or a blog can also help them keep a handle on reality.
It is almost inevitable that somebody (with the best of intentions) is going to say something really crass. There really isn’t much you can do to stop them, so maybe this is a time when a sense of humour is called for. The following statements are examples of things people might say to you. Have a laugh about them, and brace yourself for the time when someone says something even worse to you!
‘Live in the moment.’ / ‘Be strong.’ / ‘Fight hard.’ / ‘Keep your chin up.’ / ‘Don’t give up.’ / ‘Think positive.’
‘It could be worse, you know.’
‘Everything happens for a reason.’
‘At least it’s not on your face where everyone could see the scars, besides you don’t really need your breasts anyway.’
‘Gosh, I thought chemo was supposed to make you lose weight.’
‘My uncle/cousin/friend’s mother had cancer and they died.’
‘Smile – you’re getting a free boob-job!’
Enough said. Just keep a tight hold of that sense of humour!
While we were writing this book, Trish received the following email, out of the blue, from someone who had been following her on Twitter. We reproduce it with his consent.
My mother was recently diagnosed with breast cancer, which has spread quite far. We’re hopeful, but cautious at the same time. Why I’m contacting you, though, is because I just don’t know what I can do for her, how I should act around her, what I should talk about with her when I visit her in hospital. I live in [town A] and she is in [town B, 200 miles away], so I’m up there every second week or so to see her. I guess my question is: how did you want people to treat you? I know this is such a highly personal thing, and every person with cancer will differ. I’ve been trying to carry on as ‘normal’, and pretending like it’s just another visit, filling her in on details on my life and my friends, the things we would talk on the phone about. I don’t want to skirt around the issue, but I don’t want her cancer to be THE issue.
There are no rules when it comes to how to act towards a family member, or indeed any close friend with cancer. Like the writer of the above email realised, every cancer patient is different. People need or want support in many different ways, and if two people you know got cancer, they may each cope in very different ways. How on earth are you meant to know what to do? This wasn’t covered in school.
We replied with the lessons we’ve learned from experience, and our tips are summarised below.
As the writer did, accept that there will be an awkward tension between behaving ‘normally’ and dealing with the elephant in the room, their cancer. Most people ‘muddle through’ using a combination of intuition, common sense and basic humanity.
Even though you may live with them, send them daily texts and regular cards to brighten up their day. There’s nothing nicer than getting a ‘just thinking of you’ card in the post instead of a bill.
Ask your relative if there are things you can do to help – from sorting out a will to taking charge of the food shopping, from helping set up a blog or giving them a hug. They will know what they want and need from you.
It’s okay to laugh and joke about what is happening. You have to have a sense of humour. Cancer can be pretty black at times, and laughing about it helps everyone.
Your relative may not be interested in the finer points of their treatment and prognosis and want to leave everything to the doctors, whereas you may want to know every little detail. Try to respect their wishes, and not interfere with how they are handling things. Their doctor cannot talk to you about their treatment without their consent. If you are feeling angry or impatient with one aspect of their treatment, try not to show it.
Remember that your relative is not just a cancer patient. It’s important to talk to them about everything you used to. It’s incredibly tiring when the only thing anyone wants to talk to you about is your cancer. One way to handle this is to say to them ‘I’m not going to bring up your cancer unless you mention it, and then I’ll know you’re ready to talk about it.’
At some point, they may want to talk about the ‘elephant in the room’ – the fact that they might die because of their breast cancer. Most people who are diagnosed with cancer imagine their death and their funeral, and it’s important to acknowledge this if your relative wants to bring it up.
Don’t tell your relative to ‘cheer up’. Unless you’ve had cancer you can never really know what it’s like to deal with the emotional strain on you and your family. If they’re sad, just listen to what they have to say without passing judgement or trying to ‘solve’ their problems.
Don’t ask too many questions. They may be sick of constantly repeating their story, or they may want to keep some details private. Being a family member does not automatically entitle you to know everything that is going on.
Finally, don’t compare your relative with the person they were before cancer. Cancer treatment can at times be uniquely exhausting and disheartening, depending on the treatment they need. We were very fit, and we tolerated chemotherapy well, but we both had days when we literally couldn’t get out of bed. Fortunately, no one said to us ‘pull yourself together’ on those darkest days.
Deciding whether to tell your children that you have breast cancer is not easy, especially if they are young. Deciding how to tell them can be even harder, since you will need to pitch the message at an appropriate level for your child’s age and maturity. There’s no right way to do this. Remember that you are an expert in your own children and in the way you communicate that works for you as a family. That personal knowledge is at least as important as what we have written here. You may not want to tell your children at all. However, children can be remarkably perceptive and will almost certainly pick up that something is different.
There are many excellent books written by cancer charities and several mums who have had breast cancer that can help you. Your breast care nurse will be able to recommend some to you. We came across an excellent free online resource called ‘Talking to Kids about Cancer’ produced by a public health group in Victoria, Australia, which you can download for free: www.cancervic.org.au/downloads/resources/booklets/talking-to-kids-about-cancer/Talking-to-Kids-About-Cancer.pdf
Use the same principles covered earlier in the chapter about telling friends and family. You may want to do this face-to-face instead of over the phone if possible.
Teenagers and older children are likely to pick up that something is wrong and may worry more than if they knew the truth. If you don’t tell them and they find out by accident from a friend’s parent or a teacher, they may feel betrayed and have difficulty hiding the fact that they know what is going on. It may also be hard if you have younger children as well, and you tell your teenagers but ask them not to tell their younger siblings. On the whole, it is probably better to share your cancer news with your older children sooner rather than later. That way you can support them, answer their questions and help them cope as you go through treatment.
You could try doing a ‘dress rehearsal’ with your partner, but you can’t predict how your children will react, and if you have several children, each may react differently. Again, you could try writing down what you want to tell them, as well as a list of things you don’t want them to know, so that it can be clear in your head when you come to break the news.
Your breast care nurse may be able to give you a leaflet or a book that you can give to them, and you can point them to safe websites, such as Breast Cancer Care and Macmillan, so they can satisfy their own curiosity. This is safer than a random Internet search in the middle of the night, although it’s worth acknowledging that they may do this as well. Answer their questions honestly, even if the answer is ‘I don’t know’. Be honest about your own feelings, and give your children a chance to tell you how they are feeling. When you are feeling weak, tired, nauseous, miserable, antisocial, angry and so on, remind your children that your physical state and/or mood is not because of something they have done (or failed to do).
There is a great book written for teenagers called Eek! My Mummy Has Breast Cancer written by Emma Sutherland, who was 12 when her mum was diagnosed.
It is probably sensible to let someone at their school know. The senior leadership team may have an opinion about which teacher(s) should be told, and whether to share the news with your children’s friends or not. You can pass on the leaflets that your breast care nurse gave you to your children’s teachers and/or friends. If you think your children are struggling, professional counselling might help, which your GP could arrange. Older children can also speak to their GP about how they are feeling in strict confidence and you will not be entitled to know what has been discussed.
Young children and toddlers will not understand much of what is going on, so you need to keep things simple. You could start by saying ‘Mummy is poorly’ every day until you think they understand. It can be hard to answer their questions in language that they can understand, and it may be worth working out how you are going to describe surgery, radiotherapy or chemotherapy first, and getting close friends and family on board with the same child-friendly terms. Your children may want to act out some scenarios or draw pictures rather than talk around a table. Ask them (for example) to do a drawing of mummy and talk about it, or everyone could play going to the cancer clinic.
However you tell them, your children are likely to find the news upsetting and unsettling. Keep reminding them that you love them, and that this is not their fault (young children sometimes worry that it is their fault for being naughty). Spend as much time with them as you can, even if it’s just watching TV. Reassure them that someone will always be there to look after them. This may be obvious to the adults involved, but may need spelling out to young children.
We recommend Gillian Forrest’s charming story book for young children, Mummy’s Lump, which is available as a free download from Breast Cancer Care: www.breastcancercare.org.uk/sites/default/files/publications/pdf/mummys_lump_2015_web.pdf
Children are creatures of habit, and they don’t like it when their routine is disturbed. If you just need surgery and radiotherapy, then the disruption will be minimal, probably just for a couple of weeks while you recover from your operation. If you need chemotherapy, there will be a big upheaval. Holidays and birthday parties may need to be cancelled, sleepovers at home are no longer allowed because of the infection risk, although the kids may enjoy choosing and eating takeaways if you are too poorly to cook. They may feel like a lost parcel as different friends and neighbours chip in to help with school runs. Make sure that everyone helping you knows what your children have been told, to avoid confusion.
Explain that these changes are temporary (unless you have secondary cancer when there may be a permanent change at home), and that you will plan fun things for when your treatment has ended. Allow room for negotiation if you can (that ‘inessential’ weekly activity may be your child’s necessary escape from a traumatic situation). Ask friends whether they could give your child regular quality time (or commit to getting them to that inconvenient activity once a week). Talk to your children about what they did while you were away having treatment. Get them to take photos and videos so they can share parts of their experience with you. Reassure them it’s still okay to have fun and enjoy themselves while you are feeling ill.
If you are feeling rotten, you may not pick up signs that your child is not coping. Ask your child’s teacher and their friends’ parents to let you know if they have any concerns. They may have mood swings, and alternately feel guilty, confused, angry, sad or just unable to express what they feel. They may also ‘regress’ and start to behave as a much younger child (or even a baby). If you are finding it hard to watch your children struggling to cope, you can often get support from online forums and from Breast Cancer Care’s ‘Someone Like Me’, who can put you in touch with other mums.
In the UK, after a cancer diagnosis you are legally protected from unfair treatment at work. As long as your employer knows you have had cancer, they have to support you through your treatment and are not allowed to discriminate against you, although the amount of sick leave you are entitled to will depend on your contract of employment. The people you tell at work are also required by law to keep your personal information confidential from your other work colleagues. The Macmillan website gives more detail on this (see here).
It is up to you whether you tell your employer about your cancer. If you are only away from work for a couple of weeks, no one may realise that you have had cancer and you may want to keep it that way. Your employer may still need to know that you have been unwell or need to attend further appointments or have additional tests. It may help to tell them in advance how often these appointments are likely to be, even if you don’t say what they are for.
It will be harder to disguise several months away for chemotherapy, so we advise you to be up front with your employer about this. When you are first diagnosed, returning to work may be the last thing on your mind, but you should anticipate that you will be tired and need a phased return with reduced hours and/or a lighter workload for at least the first couple of weeks. If you feel you can talk to your employer in advance, tell them that you will keep in touch and start planning your return to work when you’re ready.
Your legal protection does not take away the emotional and practical awkwardness of discussing cancer with your employer. Macmillan has produced an excellent guide, called ‘Finding the words’, to help you with this challenge. Make notes of any meetings you have, and copy them to your manager so you both have a record of what was said. Remember if you are not feeling well, you can cancel your meeting and rearrange it for another time.
You should also read your employment contract again and check your company’s sickness policy. Find out how much sick leave you are entitled to and whether this is full-pay or half-pay. This can help you plan your return to work, especially if money worries are an issue. If you are a member of a union, you can ask them for advice.
It can be difficult to break the news of your cancer diagnosis to work colleagues. You may worry that everyone will give you pitying looks in the office, gossip about you behind your back or treat you differently. You may be the first person some of your colleagues have ever known with cancer, and they may not know what to do. If you do decide to tell people, we recommend planning in advance what you want to say, how much information you want to tell people and what you are happy to talk about. Setting some simple ground rules can make things a little easier. For example, you may want to ask someone to send an email round to key staff with these details to save you from repeating yourself.
If you don’t need chemotherapy, you should only need to take a couple of weeks off work to recover from your operation, and it is possible to carry on working around radiotherapy treatment. If you have chemotherapy, you may choose not to work. However, some people carry on working on a part-time basis, and plan work around their good and bad days or weeks. Working through chemo can give you a sense of normality, social company and a sense of purpose. You may also need to work for financial reasons (e.g. if you’re not eligible for much sick leave or you’re self-employed). If you decide to keep working, you will need to let your line manager know realistically how much you are capable of doing.
There are lots of things that may affect your return to work, such as fatigue, depression and menopausal symptoms. Essentially, you may find it difficult to concentrate and take longer to do things than you did before. You may also find you are exhausted after a full day back at work, and need a lighter day to recover. (We cover the side effects of treatments here.)
Because of side effects and the time you’ve had away, you will probably be less efficient – and less confident – than before you went off sick. Your employer is legally obliged to make ‘reasonable adjustments’ to help you get back to work, including what is known as a ‘phased return’ (e.g. perhaps going back three days a week initially, then increasing to four and then five days when you are ready), flexible start or finish times, changing your job description to remove tasks you are no longer able to do, moving you to a post with more suitable duties (if you agree), additional breaks for resting, and changing performance targets to take account of time you have missed. If you have developed a disability (such as heart failure), you may need additional measures (such as an accessible parking space).
IF YOU’RE FINANCIALLY STRETCHED AND/OR SELF-EMPLOYED
Not everyone is lucky enough to be covered by generous sickness benefit schemes. Financial worries on top of cancer are no fun. If your income is reduced or stops, you may feel unable to pay the bills and support your family. This can lead to a loss of self-confidence at a time when your self-image is already low. You may have to adjust the family budget to accommodate a fall in income.
If you run your own business you may feel under severe stress because your employees and/or family members are dependent on the business turnover continuing as normal. You may have put your heart and soul into building up your business and fear that your life’s work is in danger of collapsing. If you are self-employed and have no one else to rely on, it can be just as hard to deal with.
Again, the Macmillan website has a lot of advice including support for small businesses and the self-employed. The government, business organisations and voluntary groups offer a range of services, many of which are free. Macmillan can also help you work out if you are entitled to benefits to help tide you over.
Talk to your employer in advance so they can help you plan all this. It may take more than one meeting (or a series of phone calls, or someone coming to visit you at home or on neutral ground) to work out what you are now capable of doing in your job and what needs to be done to smooth your return.
If you’re about to have what you anticipate could be a difficult conversation with your line manager, do your research, know your rights, make a plan for what you would like to happen and write down what you’d like to cover in your meeting. You may not get everything you wish for, but at least you will have made your case clearly and reasonably.
If you and your employer put a bit of planning into your return to work, you will probably find it a positive experience. Your colleagues will be pleased to see you, and there may even be a welcome celebration! The week before you return, you could ask your line manager to send an email round to staff saying you’ll be coming back soon and are keen to get back into your usual routines. They might explain to colleagues that you’ll be working short days (or whatever adjustments you’ve agreed) for a few weeks.
The Macmillan website has lots of advice on returning to work after cancer, and you can call one of their advisors to get extra help. If your organisation has an Occupational Health Department, you should make an appointment to see them. Everything you tell them is confidential, and they may be able to help if you are finding it hard to cope at work.
There are other organisations such as Working With Cancer (see here) whose goal is to help people get back to work after any kind of cancer. They tend to work mostly with employers (for example, your employer might refer you to them for a programme of coaching), but you can self-refer for coaching to help you work through potential problems.
Trish stopped working as a GP as soon as she was diagnosed, but continued working as an academic (writing papers and books) throughout her chemotherapy and surgery, mostly at home. Her employer was very supportive and excused her from teaching duties and committee meetings while she was having chemo. Trish returned to work within two weeks of finishing chemo, but was very tired for three months so left work at around 4pm to go home and have a nap before getting up for supper. The Occupational Health Department at her university were very helpful. It was two years before she was back to her usual 12-hour academic days including lunchtime meetings and evening teaching!
Liz stopped working as a breast surgeon when she was diagnosed. She went back to work on a part-time basis one year after finishing treatment. It was a little more complicated for Liz because she had to cope with the physical and mental stress of being a surgeon, as well as the emotional stress of looking after breast cancer patients again. She still gets tired after a full day’s work.
Sharing the news that you’ve got cancer can be quite hard work, and you will inevitably encounter some unhelpful reactions from a minority of people. However, there’s more than a grain of truth in the maxim that ‘a problem shared is a problem halved’. Both at home and at work, once people know what you’re going through, friends, family and colleagues will generally come on side and try to help.
Now that you’ve shared the news, and the crying and the swearing have stopped, the next question you’re likely to be asked is, ‘What treatment are you going to have?’. At this stage, you may not know. All too often, people tell you about diets and supplements they’ve heard can cure cancer, or talk about the dangers of standard breast cancer treatments. In the next chapter, we’re going to explain why breast cancer is treated the way it is, and help you understand and interpret these so-called miracle cures so you can make up your own mind.