As mentioned in the Introduction, the cancer journey takes place in broadly three stages.
•Soon after diagnosis, the cancer team tries to cure or limit the damage caused by the malignancy. This might involve surgery, radiotherapy, medicines or, usually, a mixture of approaches.
•During the recovery phase, you get over the worst effects of treatment and restore your physical and mental well-being. The cancer team will monitor you to detect relapses.
•During the maintenance phase, you take steps to prevent or delay a recurrence, prevent additional malignancies and reduce the risk of other preventable diseases, such as a heart attack, osteoporosis and stroke.6
This book has focused mainly on the first of these stages. My The Holistic Guide for Cancer Survivors (see Further reading) places more emphasis on the second two stages, but this chapter will briefly consider the next steps in the cancer journey. These are only broad outlines – the prognosis varies considerably from person to person.
Palliative care
Despite impressive and continuing advances in treatment, there is, unfortunately, little hope of curing most advanced or metastatic cancers, so your cancer team might offer palliative care. This does not mean the end of your cancer treatment. On the contrary, palliative care aims to minimize symptoms, side effects and suffering while optimizing your quality of life, your ability to reach as many of your goals as possible and make the most of your relationships. Palliative care covers your emotional, spiritual, mental and social as well as physical well-being, and evolves as your needs alter. This means that you and your family need to keep the cancer team up to date with how you feel. They will ask, but do not be afraid to be proactive about discussing your symptoms, needs and difficulties before they do.
Depending on your symptoms, general health and well-being, and the type and severity of your side effects, your cancer team might suggest additional ‘supportive’ treatments. Always tell your GP or cancer team if you experience pain – changing your painkillers usually helps. If not, cancer medicines, surgery, radiotherapy and other treatments might shrink or remove some metastases that cause pain. The cancer team might suggest drugs to tackle specific symptoms or side effects, such as nausea, diarrhoea or constipation. Never take any medicine – even one generally available without a prescription – without speaking to your cancer team first.
No two people experience advanced cancer in the same way, so doctors and nurses individualize palliative care to meet your wishes and needs. You can, for instance, decide where you would like to receive care – at home, in hospital or in a hospice. This can be flexible – you might consider spending a few days in a hospice to give your carers at home a break. These are important decisions and there is not space to consider palliative care fully here. Speak to your cancer team or contact the cancer charities for more information and help.
Social support
Support from family, friends and other groups can help people adapt to life with cancer. Religious groups offer social and practical as well as spiritual support. A study of 200 people with cancer found that religion provided ‘mental support and strength’ and increased their confidence that their health will recover. In addition, religion helped people cope with cancer-related stress ‘positively and optimistically’, reduced anxiety and helped them face uncertainties about the disease’s progression.107
In another study, researchers analysed 9,267 women’s social networks within approximately two years of their being diagnosed with breast cancer. The researchers considered five elements of social networking: spouse or partner; religious ties; community ties; friendships; numbers of living first-degree relatives. Over an average of almost 11 years, socially isolated women were about two-fifths (43 per cent) more likely to experience a recurrence of their breast cancer than socially integrated women. In addition, deaths from breast cancer (64 per cent) and total mortality (69 per cent) were about two-thirds higher and deaths unrelated to breast cancer were more than four-fifths (82 per cent) higher in socially isolated women.108
So why does a social network help you cope? Religion, close family and friends can create a sense of community and belonging, which can bolster your mental and physical resources and offer social, practical and emotional support. Your partner’s, family’s and friends’ practical and emotional support can be invaluable if you are, for example, trying to drink less alcohol, quit smoking, take more exercise, change your diet or take medicines as prescribed. Your partner, family and friends can help you adopt a healthy lifestyle, ignore bad moods triggered by the disease or lifestyle changes, boost your motivation, watch out for issues – including fatigue, anxiety and depression – and encourage you to see a doctor when you feel unwell or seem to be taking a turn for the worse or developing side effects.
Develop relationships that preserve or enhance your emotional well-being and bolster your ability to cope; disengage from those that are counterproductive. After all, social networks that cause profound stress are hardly good for your mental or physical health. In some cases, such as your family, you might not be able to remove yourself from the network, but you can probably find ways to limit its negative influence.
Meanwhile, partners, family members and friends need to tread the fine line between ‘nagging’ – even with the best intentions – and ‘support’. Support helps and reinforces their loved one’s efforts to tackle unhealthy behaviours. Control – trying to persuade a partner to adopt healthy behaviours when he or she is unwilling or unable – can reduce the likelihood that the person will make the changes and can undermine his or her mental health.
Residual symptoms
Residual symptoms are common among cancer survivors. For example, persistent difficulty swallowing, dry mouth or poor absorption of nutrients can make eating awkward and lead to weight and muscle loss, among other things.36 A dietician (ask your GP or a cancer team for a referral) can suggest ways to tackle any lingering nutritional difficulties.
Fatigue, depression and other mood disturbances, trouble sleeping, pain and cognitive issues seem to be particularly common among cancer survivors.90 Indeed, a third of cancer survivors reported that their symptoms were as bad a year after their diagnosis – when they were not receiving treatment – as at the start of their cancer journey.90 Furthermore, between a fifth and a third of cancer survivors experience fatigue at least five years after their diagnosis or the end of treatment.90 Some people, for reasons doctors do not fully understand, seem to be especially likely to develop long-term cancer-related fatigue. Urinary, gastrointestinal and sexual symptoms can persist for years after treatment of pelvic cancers ends too. People who survive breast cancer might endure chronic lymphoedema (see page 111).1
Sometimes symptoms arise months or even years after treatment ends, such as osteoporosis following endocrine (hormonal) therapies, and heart disease after certain types of chemotherapy or radiotherapy. Similarly, patients less than 40 years old treated with radiotherapy or chemotherapy for Hodgkin’s lymphoma, non-Hodgkin’s lymphoma or testicular cancer are five times more likely than healthy people to develop congestive heart failure, which typically arises more than ten years after treatment ends.1
The long-term psychological effects
Apart from the chronic illnesses caused by the cancer or its treatment, people might experience difficulties dealing with the psychological and emotional fallout from the cancer years later.
Being diagnosed with cancer forces you to confront your mortality, even if the malignancy is not terminal. You might need to adjust your lifestyle or body image – such as following surgery – for the rest of your life. You might need to change or leave employment, especially if you have marked cancer-related fatigue.90 Not surprisingly, cancer survivors and their families often shoulder a considerable long-term psychological burden.
Fears that the cancer will recur can dominate some survivors’ lives after remission. The longer you are cancer free (‘in remission’), the more likely it is that you are cured. For most cancers, the risk of recurrence (relapse) is relatively small after remission lasts five years. Nevertheless, cancers occasionally occur long after this. About 1 in 200 breast cancers relapse more than 10 years after the initial diagnosis, for example – one woman had a recurrence of her breast cancer 27 years after the malignancy was first found.109 Very occasionally, Hodgkin’s lymphoma can recur 15–30 years after diagnosis, even following a supposed cure.2
It is easy to become preoccupied with watching for signs that the cancer is progressing or recurring. Ironically, this increases the likelihood that you will notice – and worry about – an innocuous symptom. A stomach ache might signal that the cancer has seeded a gastric metastasis – but it is more likely to be indigestion.83 As mentioned above, anxiety and depression can cause physical symptoms, such as muscle spasms and pain. Equally, though, brain metastases, some medicines and uncontrolled pain can cause anxiety and depression. Essentially, therefore, while you should be vigilant, try not to worry excessively or become preoccupied but also never ignore a change – always check with your cancer team.
Even if you do not need palliative care, managing cancer does not end with the last chemotherapy infusion or the final radiotherapy session. You might need to take medicines for several years, perhaps even the rest of your life, to stop the malignancy recurring. You might experience long-term symptoms or difficulties. You might have to pick up the pieces psychologically after dealing with the diagnosis or the trauma of treatment. You will need to develop a plan individual to you that, typically, includes:12, 36
•follow-up visits with your cancer team;
•changes that help you live with or overcome residual symptoms;
•optimizing your general health and lifestyle, including dietary advice to reduce the risk of a recurrence (a personalized dietary and exercise programme can also help rebuild muscle strength and correct symptoms such as anaemia);
•improving your mental and spiritual well-being;
•watching for recurrence and new cancers.
A last word
I will leave the last word to William Osler – one of the greatest doctors in the eighteenth and early nineteenth centuries. Osler reported the case of a patient bedridden with metastatic breast cancer. The malignancy had spread to her spine, other breast and right eye. Two years later, Osler reported: ‘She drove a mile and a half to the station to meet me and drove me to the station on my return.’ Osler said the case – and others like it – ‘are among the most remarkable’ in medicine – they illustrate that ‘no condition’, not even cancer, ‘however desperate, is quite hopeless’.71