ONCE YOU HAVE finished all your hospital treatments, friends and family may expect you to go back to normal, as you are now ‘cancer-free’. However, we found that this period is often harder to deal with than the treatments themselves, especially as you are no longer seen regularly in the hospital, and are living with the fear of recurrence.
Breast cancer follow-up care anywhere in the UK, whether NHS or private, follows evidence-based National Institute for Health and Care Excellence guidelines (see Chapter 6). These recommend that you should have an agreed care plan, with joint care between your cancer team and your GP.
In the UK, everyone should be seen by a doctor or a breast care nurse at one year after diagnosis, and again at five years. If you have had chemotherapy or been involved in a clinical trial, you may also be seen regularly by your oncology team over the first five years. Your doctor will examine you to look for signs of recurrence. If you aren’t happy with the appearance of your breasts, now is a good time to discuss with your surgeon whether another operation might be able to improve things. They will ask you how you are coping with the side effects of your treatment, such as hormone therapy, and discuss how long you should keep taking it for. They may also do a holistic assessment, where they ask about all the other parts of your life that can be affected by cancer, such as money, relationship issues and your mood. The results of this assessment will be fed back to your GP, along with an agreed action plan.
Your GP will not invite you for a check-up. However, as an NHS patient, you can go to your GP at any time if you need medication, are worried about a symptom or simply feel you’re not coping. Your GP probably knew you before you got cancer, and will want to share your joy and relief after treatment ends. He or she can supply you with sick notes if you’re not ready to return to work, and will be well placed to support you if you’re not coping emotionally. If you’re nervous about seeing your GP (for example, if you don’t know them well), make a list of the things you want to discuss and put the most important ones at the top. GP surgeries usually have practice nurses who offer appointments, and you may find the nurse has more time for you and is more approachable.
If you still have a breast on the other side, you will have yearly mammograms for five years. When they finish, if you are over 50 you will go into the NHS Breast Screening Programme and be invited for mammograms every three years. If you are under 50, you will continue to have mammograms every year until you enter the Screening Programme. If you are over 70 and are no longer routinely invited for screening mammograms, you can self-refer for a mammogram every three years.
If you had dense breasts when you were diagnosed or your cancer wasn’t seen on a mammogram, research has shown that mammograms are still the most effective way of screening your other breast, because most new breast cancers are easy to see on a mammogram. Your breasts normally become less dense with hormone therapy and the effects of the menopause. If your breasts are still dense or your mammogram is hard to interpret, your doctor may then recommend an MRI.
Most breast units in the UK offer open-access follow-up or are moving towards that option. This means you can phone up the breast care nurse if you have a problem and she will arrange for you to be seen in clinic. This is often quicker than going to see your GP and getting a new referral, though you may prefer to do it that way. In sum, if you have a problem between your booked appointments, you have two choices: see your GP or call your breast care nurse.
There are two ways that breast cancer can come back – either as a local recurrence in the breast tissue, skin or axillary lymph nodes, or as a distant recurrence in your bones or organs. Distant recurrence is the same as secondary breast cancer (see Chapter 23). When you have finished treatment, you should be told what the signs and symptoms of local and distant recurrence are. Breast Cancer Care have a good leaflet that explains this in more detail. It is effectively up to you to police yourself and to learn what is normal and not for you.
The symptoms of a local recurrence are similar to the symptoms of primary cancer (see Chapter 2) or can show as a lump in or near your scar. You may also notice a red raised area like a spot or an ulcer if the cancer comes back in your skin. However, surgery and radiotherapy can make your breast feel hard or lumpy, and it can be hard to know what is normal after treatment. If you have any concerns, ask your GP to refer you back to the breast clinic. Local recurrence is normally treated with surgery first (see Chapter 7).
The symptoms of distance recurrence (secondary breast cancer) are explained here. Jo Taylor, a patient advocate with Stage 4 breast cancer, produced this excellent infographic (see here) which summarises the symptoms of secondary breast cancer:
If you have any of these symptoms, see your GP or call your breast care nurse and ask to be seen quickly. We know from experience that in the first few months and even years after treatment, every little twinge is anxiety-provoking. Your symptoms may have a simple explanation, but your doctor will probably arrange some tests to make sure. We cover the treatment of secondary breast cancer in Chapter 23.
While you are having breast cancer treatment, you have a lot of hospital visits, appointments and tests. Once you have finished treatment, this all stops. Understandably, after all the attention and emotional trauma of the initial treatment phase, it is common to feel abandoned and anxious rather than relieved or exhilarated when your doctor waves you goodbye and says, ‘See you in four years.’ This is the time when you really start to come to terms with your cancer diagnosis, and what living with cancer is actually like. You probably have lots of questions, such as:
● Am I the only person who feels like this?
● Who is going to check up on me?
● How will I cope at home and at work?
● Where can I get support?
There are no rules about what you should or should not feel. A survey of 800 breast cancer survivors by the charity Breast Cancer Care found that just over half of people with breast cancer struggled with anxiety after the end of treatment. More than a quarter described life after the illness as ‘tougher than the illness itself’, and nearly one-third had symptoms of depression (e.g. overwhelming sadness, tearfulness or difficulty seeing the positive side in anything). Anxiety can be particularly bad when you’re coming up to your next check-up (‘scanxiety’). The stress of waiting to find out your scan results can be unbearable.
The Breast Cancer Care survey identified three top issues for women immediately after completing treatment for breast cancer: fear of the cancer coming back (80 per cent), fatigue (79 per cent) and lack of body confidence (52 per cent). Only 1 in 10 of women felt ‘positive and ready to move on’. Indeed, some breast cancer survivors use the term ‘collateral damage’ to refer to the knock-on (and sometimes permanent) effects that cancer has on their body, self-esteem, relationship, job, and so on.
Dr Peter Harvey, a cancer psychologist, has written a very useful summary of the emotional and physical roller coaster of cancer treatment called ‘After the treatment finishes – then what?’:
It is a widely-held belief … that the treatment of an illness is meant to make you feel better. One of the many paradoxes of cancer is that, more often than not, the treatment makes you feel worse. This is not surprising – we cut and possibly mutilate, inject you with poisonous and powerful chemicals, subject you to dangerous rays all in the name of treatment. The aggressiveness and power of the treatments are a necessary response to the power of the disease, of course, but this very power takes its toll in other ways. These interventions place enormous physical strains on the body. There is often little time to recover from one treatment before the next one starts. The treatments themselves may make it difficult for you to sleep and eat properly – two important parts of the body’s defence and recovery system. Some of the treatments drain your energy and resources to such an extent that it’s as much as you can do to put on the kettle. Add to this the emotional turmoil – the dealing with the impact and implications of the diagnosis, the uncertainty, the upheaval, the additional burden that you feel that you are imposing on family and friends, the loss of so many aspects of your routine. Emotional stress can be as energy consuming as any physical activity. After all that, is it any wonder that you feel wrung out and exhausted, without resources or reserves?
Don’t be too hard on yourself if you don’t feel as good on the inside as you look on the outside. Your physical symptoms will gradually settle down over the next couple of months, but the emotional side effects – the fear of your cancer returning, waking up each day wondering if this is the day it comes back, worrying whether your winter cold is actually a recurrence – can take years to resolve. All of these thoughts and feelings do get better in time (trust us – we’ve been there). However, it may be hard for your friends and loved ones to understand your turmoil. In their eyes you don’t have cancer any more, and life should return to normal.
It may help to stop thinking about getting ‘back to normal’ (that is, returning to exactly the same state you were in before you got cancer) and instead think about ‘adjusting to a new normal’. Let’s face it – life has a different meaning now, doesn’t it? Some things have become unimportant. Some things have gone forever. Other things have endured and even strengthened. Your ‘new normal’ can include, for example:
● New and different friendships.
● A different body image (that takes time to learn to love).
● Difficulty doing things you used to do, both physically and mentally.
● Emotional scars from the trauma of treatment.
● A different relationship with your partner and/or children.
● A different attitude towards your job.
● Accepting that you are unable to have children.
You may not like your ‘new normal’ as much as the life you had before cancer. You may grieve the body you had (or even the marriage you had) before cancer came along. As hard as this is, you can’t turn back the clock. Life goes on. It just takes time to adjust, and some people need a lot longer than others.
Make sure you look after yourself. As we said in Chapter 18, eat a healthy diet and do some regular exercise, especially as these can both reduce the risk of recurrence. Find ways to relax, either alone or with others. If you think that a more structured programme of group support is what you need right now, sign up for one of the ‘Moving Forward’ courses offered by Breast Cancer Care. These usually run for half a day a week for four weeks. They offer factual information but also a strong and positive group psychology for tackling the next stage in your life.
While symptoms of moderate anxiety and depression are common during breast cancer treatment and in the immediate aftermath (see here), they usually lessen as the months go by. Rarely, people can develop post-traumatic stress disorder (PTSD) – sometimes months or years after their cancer treatment. An excellent account of PTSD (and some good tips on how to cope with it) can be found on Steve Pake’s blog. Steve had a different cancer but his insights about PTSD are applicable to breast cancer:
I arrived at work on a seemingly ordinary day on Thursday, May 21st, but found myself unable to think or concentrate at all. I felt a lot of nervous energy and anxiety building, but didn’t know why. I had also started having cancer-related nightmares in the previous week, as if to predict something rotten coming. It turned out that this particular day was my last two days of chemotherapy, four years ago, and I remember those days all too well. I was so afraid that the chemo wasn’t going to work, wondering if I was still going to die or not, and I was tired of being poisoned almost to death and feeling like complete hell. The only thing that stopped me from ripping off my lines and running away were an extra few doses of [a relaxant drug], and its induced haze and false calm. All of these fears and emotions had been buried, but here they were, suddenly coming to the surface four years later. I was right back in that oncology infusion room again as if it were happening now, and I was absolutely terrified. I went to a quiet and secluded corner at my office where nobody was likely to find me, and there I sat with hands trembling and my head between my knees as the tears started falling.
People say to just not think about these things, but they don’t realize that I’m not thinking about them, consciously at least. It’s from our sub-conscious. It’s thinking about it, and causing us to re-experience these memories as if they were happening on that very day. The same powerful emotions of extreme fear, that fight-or-flight adrenaline, and the instinct to run away, right now, came out.
If this sounds like what you’re going through, you should seek professional help. PTSD is very distressing but it is often very treatable (for example with cognitive behavioural therapy). See your GP or mention it to your oncology team.
A lot of people feel grateful for all the care and attention they have received and want to give something back to help others. This may be as simple as donating money to your local breast unit or taking part in a sporting challenge to raise money for a cancer charity like Macmillan, Breast Cancer Care or Breast Cancer Now. There are also lots of small events all over the UK such as the popular ‘Race for Life’, and it can be great fun to go along with your family and friends, dressed in pink from head to toe. It may also give you a new-found appreciation for your body; what it is capable of dealing with and what it can do for you now. Look after it – you only have one.
We did a 100km women-only bike ride through the night to raise money for women’s cancer charities, wearing pink feather boas and tutus. It was amazing to be surrounded by thousands of women affected by cancer. We raised over £2,000 between us, and the event as a whole raised over £1 million in one night.
Being diagnosed with breast cancer is life-changing – not just for you, but for your family and friends as well. It can feel like you’re on a roller coaster with no way of controlling what’s happening to you, but it’s not all negative. Although our lives are completely different now, in a small way, they are better than they were before. We have made so many new friends, we appreciate just what our bodies can to do for us, and we have learned that spending time with our loved ones is what gets us through each day. We hope that we’ve empowered you to understand what is happening to you, and given you the strength to cope.