Surviving cancer

With half of all people with cancer still alive a decade or more after diagnosis, cancer is in many respects becoming a long-term condition, and cancer survivors a growing sector of the general practice patient population

According to Cancer Research UK,¹ there were 352,197 new cases of cancer diagnosed in the UK in 2013. Slightly more men than women were affected. In men, just over half of cancers involved prostate, lung or bowel. In women the big three were breast, lung and bowel, also responsible for just over half of all cancers diagnosed. Half of all cancers are diagnosed in patients over the age of 70: cancer can occur at any age, but it is mainly a disease of older people (only 1% of cancer survivors are aged less than 17).² In 42% of cases, the cancers are thought to be theoretically preventable, using current knowledge about risk factors.

The thought of getting cancer scares people, and it is not just people who have had a cancer before who are scared of getting it again. A community survey in the UK of over 13,000 people aged 55 to 64 not known to have cancer found that 59% said they feared cancer more than any other disease, and 52% said they would rather not even think about cancer. Women worry more than men.³

In 2014 there were 163,444 deaths from cancer in the UK.¹ This means that each year there are many more diagnoses of cancer than deaths from cancer. Cancer kills people, but usually not straight away: half of patients diagnosed with cancer will survive for more than 10 years.¹ Some cancers have a worse outcome than others: for someone who is diagnosed with lung cancer, the chance of being alive 10 years later is only 5%, but for testicular cancer there is a 98% chance that you will be alive 10 years after the diagnosis. Survival after a cancer diagnosis also depends on the ‘stage’ of the cancer: how big it is and whether or not it has spread. For example, as we saw in the article on malignant melanoma last month, if the lesion has been fully excised and there is no evidence of spread then the chance of being alive after 5 years is 90%; if there has been spread to brain, lungs or skin, then this chance reduces to as low as 20%.⁴ Early cancer is detected more commonly than late stage cancer. It is important to diagnose cancer as early as possible.

All this means that there are a lot of people out there who have been diagnosed with cancer and who are still alive. According to Macmillan there are 2.5 million of them in the UK.⁵ Add to this all their family and friends, and there can be few families in the country who are not affected. Putting this number in context, the number of cancer survivors is not as great as the number of people with type 2 diabetes (3.5 million) or cardiovascular disease (7 million) but rather more than epilepsy (600,000) and atrial fibrillation (835,000 in England): these are all important issues for primary care.^6–9 Also, as cancer is mainly a disease of the elderly, patients with cancer will often have one or more other chronic illnesses: 58% of people aged over 60 have at least one chronic illness,¹⁰ and so may already be known to their general practice nurse (GPN). As people get older, and treatments for cancer and other long-term illnesses gets better, patients who have survived cancer are likely in the years ahead to be an increasing part of GPN workload. Better treatment does not necessarily save work.

WHAT CAN BE DONE?

In 2007, the Department of Health, in association with NHS Improvement and Macmillan Cancer Support launched the National Cancer Survivorship Initiative (NCSI). In 2010 they published a ‘vision’ for cancer survivorship, setting out the changes necessary to improve the wellbeing of cancer survivors, followed in 2013 with a justification for the proposals.²

The NCSI proposals for change are all plausible (in my view), and should be of benefit. However, the proposals are all time consuming, quite aside from the costs of implementation. At a time when the NHS is taking a more severe financial bashing than at any time in the last 35 years, implementing NCSI will mean removing resources from somewhere else. Where this ‘somewhere else’ might be is not clear, although NCSI suggests that supporting patients in self-management where appropriate could save two outpatient appointments per patient per year.

The NCSI is very keen on Care Planning. Care Planning is sensible and ought to work, and has been advocated as a good thing to do in a wide range of patient management situations. However, the final report from the CAPITOL project,¹¹ run by the universities of Manchester, Cambridge and York, concluded that there is scant evidence that Care Planning does patients any good in a healthcare context and that, in addition, the process is not much liked by either healthcare staff or patients. It is made more complicated because there is not complete agreement about what Care Planning actually is and what form it should take, but whatever form it takes it requires extra time over and above normal care.

The NCSI report² hardly mentions primary care at all, which is strange: since primary care meets 90% of patient healthcare needs, it could perhaps be reasoned that a patient with a problem that might be related to their cancer would turn first to a GPN or a GP for advice. However, it does suggest that patients who survive for 1–5 years with non-cancer complications could be supported through increased GP management of co-morbidities.

So what did the NCSI recommend?

INFORMATION

As in all situations where a diagnosis of a serious illness is made, patients want to know what is happening to them, and how it has been concluded that they have cancer. This process must start at the point of diagnosis, with understandable information which is personalised for the individual patient. A diagnosis of cancer is ‘bad news’ in the sense that the consultation skills required for the delivery of bad news should be used. A consultation following the confirmation of a cancer diagnosis will take time, not because the medicine is complex (though in fact it often is) but because patients are not very receptive when their head is full of the recent knowledge that they have cancer. For similar reasons, information may need to be delivered repeatedly and on separate occasions. Clinical Specialist Nurses are key players in this. In addition there are several websites that can be consulted for patient information: some, such as Cancer Research UK,¹² cover all cancers, while others, such as Melanoma UK,¹³ offer advice on individual cancers. It is recommended that patients should be given an individual written report of their cancer, its diagnosis, and the treatment options available.²

When cancer is diagnosed, it is usually felt that treatment should get underway without delay. There are, however, always options, including the option to do nothing. Cancer treatments are generally pretty horrible. Operations may be disfiguring and painful, and may be hazardous especially for a patient who also has other ongoing medical problems. Chemotherapy and radiotherapy only work because they kill cancer cells slightly more quickly than they kill the rest of the body. These treatments are better than they used to be, but none are completely free of side effects. A common adverse effect of chemotherapy is hair loss, a way of announcing to the world: ‘Hey, I have cancer’, something that many people would wish to avoid.

A diagnosis of cancer often results in a steamroller effect where it is assumed that your patient is compelled to go along with the treatment recommended by the latest guidelines. Treatments may be presented as inevitable, and options only fleetingly discussed. However, your patient will have priorities as well, and ideas, concerns and expectations should be respected even if they do not allow guideline-consistent medical care. You will only find out what these priorities are if you ask. The prolongation of life at all costs may be less important for an individual patient than the avoidance of medical toxins. It may also mean that as a GPN you have to contact the cancer specialists to tell them what your patient wants, since many patients are scared to voice their feeling themselves and need someone to act as advocate (or even referee) on their behalf. All this is not conceptually difficult: it is called informed consent and is a basic ethical principle.

Other information may be needed about available financial benefits, and fitness to work during and after treatment.

REHABILITATION

Rehabilitation may start before treatment, so-called ‘prehabilitation’, to make sure your patient is in the best condition to survive the treatment. This will include optimising the treatment of any other conditions and having due regard to any medicines that might need to be stopped or started – examples here would be the patient on warfarin who is to have surgery, or the patient found to have high blood pressure which needs to be stabilised before treatment can continue. However, the ‘uncontrolled hypertension’ trick is one that you will have come across previously as an excuse to remove patients from treatment waiting lists – and hence time-targets for treatment. The game is played like this: a secondary care clinic tells a patient they have a serious illness and needs hospital treatment, then takes the patient’s blood pressure, which is (understandably) high; a letter is sent to the practice informing them that the patient has been removed from the waiting list, and requiring proof of blood pressure control before reinstatement; patient has a blood pressure check in primary care and it is found to be normal, but the patient has to be re-referred.

It can be assumed that our secondary care colleagues will pay due attention to patient checks and follow-up after treatment, so far as resources allow: you may encounter a concerned patient who was advised at a secondary care clinic to re-attend after a month only to be told when trying to book the appointment that the clinic in question was already fully booked.

There is also a need to maximise the benefits of treatment through lifestyle and other changes. Luckily the generic lifestyle advice recommended for cancer survivors accords with the advice you might offer to anyone who wants to make some changes and become healthier. Less luckily, the advised changes always involve stopping doing things that give pleasure, or starting doing things that cause pain. To the patient convinced he is facing a death sentence, it is understandable if he wants to maximise the pleasures that remain to him in his last years.

Diet

A lot of cancers could be prevented if people ate a healthy diet, maintained a healthy weight and drank less alcohol.¹⁴ Limited evidence is also accumulating that healthy eating and weight management can counteract some adverse effects of cancer and reduce the risks of recurrence.² Unfortunately, there is a growing gap between the cost of healthy and ‘normal‘ foods.¹⁵

Achieving a healthy weight is a way of reducing the disability that any illness, including cancer, can cause. Mobility impaired by breathlessness or pain is generally eased by not having to carry around a few kilograms of additional body weight.

Exercise

The evidence supporting the value of increased activity in patients with cancer is quite impressive. Of course, some patients will be limited by the cancer or its treatment, but even doing a bit is better than doing nothing at all. Benefits include:

• Fewer complications after anaesthetic or surgery
• Improved physical function and cardiovascular fitness
• Reduced anxiety and depression, and improved self-esteem
• Probable reduced risk of cancer recurrence – already demonstrated for breast, colorectal and prostate
• Reduced risk of developing other conditions
• Improved independence
• Need to use health services less²

Improving levels of activity does not necessarily involve joining a gym or indeed – heaven forbid – wearing Lycra. It is also important that your patients do not feel that if something goes wrong with their cancer, then they are to blame for not making the recommended lifestyle adjustments.

CONSEQUENCES OF TREATMENT

Any patient who consents to treatment for their cancer should be fully informed about the possible side effects as well as the benefits of that treatment. Unfortunately in the hurly-burly of the early stages of diagnosis and investigation, people may either not be told about the drawbacks of the treatments, or else become so fixed on the reality of their plight that the information is not recalled. This is a further good reason to issue a written treatment plan to every patient diagnosed with cancer. Also, the problems that patients have after treatment which need secondary care intervention are commoner than was previously realised.² As an example, the risks of treatments for breast cancer are shown in Box 3.

The chance of treatments causing problems is usually expressed in terms of ‘risk’ – it is usually not possible to predict with complete accuracy which patients will have which problems. An ability to correctly interpret the risks of healthcare treatments is not a skill which everybody has, and that includes healthcare professionals.¹⁶

An important variation of this is seen in the adults who had cancer as children. This group are four times more likely than the average population to develop another primary cancer when they become adults. In particular, childhood radiotherapy to the lower abdomen significantly increases the subsequent risk of colorectal and genitourinary cancers.¹⁷

TERMINAL PHASE

When cancer is diagnosed, the common fear is that there will be an inexorable (and possibly rapid) downhill path to death. Death may indeed be the conclusion, but usually not until several years after diagnosis. If and when this terminal phase is encountered, then this will throw up the probability of fresh tests, and possibly surgery and different treatments. Once cancer has occurred, there will be an enduring anxiety that it might return or spread, an emotional burden that may be difficult to bear.

The need for information during life with cancer is not static, but alters with time. New concerns will arise that have not been considered previously. The situation, and so the outlook. may change. More treatments require a fresh pursuance of informed consent. So giving information after a diagnosis of cancer is a continuing and evolving task for healthcare professionals. It is highly possible that these new information requirements will first come to the attention of primary care because of better accessibility: seeing a GPN requires a phone call, but seeing an oncologist usually requires a more complex process unless access can be secured through the Clinical Nurse Specialists. So when a patient is concerned about a new worry or a new symptom, it will often be a GPN or a GP who is turned to in the first instance.

At the point where further treatment of the cancer is no longer possible, or no longer desired, this does not mean that the job of the healthcare professional is over. There is always the option of symptomatic support, which should be both medical and psychological. The transition to Palliative Care is another step on the treatment pathway and again requires discussion, the provision of information, and the achievement of shared understanding and consent. Morphine is a wonderful drug for alleviating all manner of symptoms encountered during terminal care, but for many patients the introduction of this medication is the strongest possible signal that they are about to die.

CONCLUSION

In the future there will be more people on the practice list who are living with a diagnosis of cancer. There has been a lot of attention given to the early detection of cancer over the last 35 years, and modern treatments are better: there are more cancer survivors because we are getting better at doing our jobs. Cancer has a particularly feared reputation among our patients. As a GPN you may well be in regular contact with many of these patients, because of their cancer and also because they are likely to have other things wrong with them as well.

Much cancer care involves giving our patients the information they want to become fully involved in their management. Specialised secondary care clinics, Clinical Nurse Specialists and Multi-Disciplinary Teams can only provide so much support. The traditional consultation virtues of listening to your patients and trying to understand their point of view remain a crucial part of their care.

REFERENCES

1. Cancer Research UK. Cancer Statistics for the UK. http://www.cancerresearchuk.org/health-professional/cancer-statistics

2. NCSI. Living with and beyond cancer: taking action to improve outcomes. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/181054/9333-TSO-2900664-NCSI_Report_FINAL.pdf

3. Vrinten C et al. The structure and demographic correlates of cancer fear. BMC Cancer201414:597 DOI: 10.1186/1471-2407-14-597. https://bmccancer.biomedcentral.com/articles/10.1186/1471-2407-14-597

4. Melanoma UK. Statistics. http://www.melanomauk.org.uk/about_melanoma/statistics/

5. Macmillan Cancer Support. Statistics Fact Sheet. http://www.macmillan.org.uk/documents/aboutus/research/keystats/statisticsfactsheet.pdf

6. CKS. Diabetes – type 2. Incidence and prevalence. http://cks.nice.org.uk/diabetes-type-2#!backgroundsub:3

7. British Heart Foundation. Heart Statistics. https://www.bhf.org.uk/research/heart-statistics

8. CKS. Epilepsy. Prevalence. http://cks.nice.org.uk/epilepsy#!backgroundsub:2

9. CKS. Atrial fibrillation. Prevalence. http://cks.nice.org.uk/atrial-fibrillation#!backgroundsub:2

10. The King’s Fund. Long-term conditions and multi-morbidity. http://www.kingsfund.org.uk/time-to-think-differently/trends/disease-and-disability/long-term-conditions-multi-morbidity

11. Care planning in the treatment of long term conditions – final report of the CAPITOL project. http://hrep.lshtm.ac.uk/publications/Care%20planning_final_Bower%20et%20al_7%20Mar%2013.pdf

12. Cancer Research UK. http://www.cancerresearchuk.org/home-page

13. Melanoma UK. http://www.melanomauk.org.uk/

14. WCRF/AICR. Policy and Action for Cancer Prevention. Food, Nutrition, and Physical Activity: A Global Perspective (AICR, 2009).

15. Jones NRV, Conklin AI, Suhrcke M, et al. The Growing Price Gap between More and Less Healthy Foods.

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0109343

16. Lloyd AJ. The extent of patients’ understanding of the risk

of treatments Quality in Health Care 2001; 10 (Suppl I):i14–i18

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1765734/pdf/v010p00i14.pdf

17. Reulen RC, Frobisher C, Winter DL et al. Long-term risks of subsequent primary neoplasms among survivors of childhood cancer. JAMA. 2011 Jun 8;305(22):2311-9. doi: 10.1001/jama.2011.747.