Ringing the bell and then falling off a cliff … life after cancer

In developed countries, an increasing incidence of, and decreasing mortality from, cancer is leading to burgeoning numbers of people living with a personal history of cancer¹. In the USA in 2016, it was estimated that 15.5 million people were cancer survivors, a number which represented 4.8% of the population. This number is expected to increase to 26.1 million by 2040. In 2016, 67% of survivors had survived at least 5 years, 44% had survived at least 10 years, and 17% had survived at least 20 years from the time of diagnosis². In Australia, it has been estimated that currently one in 22 people has a personal history of cancer, but by 2040 one in 18 Australians will have been diagnosed with cancer during their lifetime. By 2040, more than half of Australian cancer survivors will be aged 70 years and older, and the most common cancers they will have survived will be breast, prostate, colorectal, and melanoma³. The prevalence of a specific type of cancer in the population is a function of the cancer incidence (including detection through screening) as well as the cancer-specific mortality once it is identified and treated⁴.

What is the significance of ‘ringing the bell’? Originally started in the USA, the ringing of a bell at the completion of cancer therapy has now spread to other countries⁵ and involves both children and adults completing their cancer treatment⁶. The ringing of the bell is a public act performed by the cancer survivor but witnessed and acknowledged by members of the treatment team, family, and friends. Although the act of bell ringing is marked by joy and celebration, the completion of cancer treatment can involve a complex mix of emotions. It symbolizes the end of one journey (intensive treatment such as chemotherapy or radiotherapy) but also represents the beginning of another journey, that of living with a personal history of cancer.

At the start of that second journey, although an individual may be ‘cancer free’, it does not mean they are necessarily free of symptoms related to the cancer or its treatment. According to a UK online survey of people living with cancer, two in five of those who had finished treatment in the previous 2 years were living with moderate–severe pain or discomfort⁷. The same report described people not feeling that they had sufficient support once their acute treatment finished, and they likened the experience to having ‘fallen off a cliff’. Fear of recurrence is the single most important unmet need of cancer survivors⁸ and drives the desire for comprehensive health surveillance through the dual pressures of risk aversion and anticipated regret⁹. At the end of their intensive treatment, cancer survivors need medical follow-up, but by whom and how often? This is a source of anxiety. Cancer survivors perceive their specialist oncologists to be too busy to attend to small issues but they worry that their primary-care physician does not have sufficient cancer expertise¹⁰. However, as a result of a range of forces, a relative shortage of oncologists is predicted in the future (at least in the USA¹¹). Hence, it is likely that more follow-up care will need to devolve to family physicians so that oncologists can provide acute cancer care in a timely fashion.

People living with a personal history of cancer have plenty of concerns other than their survival. Cancer survivors in the UK accessing a helpline were 25 times more likely to talk about financial stress than about death¹² and the financial pressures are complicated. People may face prejudice from employers who see a person with a history of cancer as a liability, and financial institutions may be reluctant to provide them with services such as insurance. In order to reduce the likelihood of unfair discrimination, France and Belgium have recently adopted laws aimed at facilitating access to mortgages and insurance for cancer survivors. Under the French law of ‘Droit a l’oubli’ (the right to be forgotten), applicants for loan-related insurance need not mention their history of cancer if at least 10 years have elapsed since their treatment¹³. This 10-year time frame is being regularly reviewed on the basis of up-to-date cancer survival data, with low-risk cancers being moved from a 10-year to a 5-year time frame. The 5-year list now includes early breast cancer. In Belgium, companies have to justify a decision to refuse insurance on the basis of a specific risk or a premium more than 75% above the standard rate. This is forcing insurance companies to be aware of the most recent data on cancer survivorship in order to be able to justify their decisions.

These legal approaches are consistent with the outlook for some cancers being such that survivors now have essentially the same life expectancy as people their age who have not had cancer and so are more likely to die of causes other than their cancer. Women are much more likely overall to die of heart disease than breast cancer. Increasingly, this also applies to women with a history of early breast cancer, although this may be distorted in the case of breast cancer where some forms of treatment are cardiotoxic¹⁴. Therefore, it makes sense for health-care providers to spend time with cancer survivors to assist them to minimize their risk of cardiovascular disease, including smoking cessation, maintaining a healthy weight, and being physically active¹⁵. Although there is a dearth of evidence related to the value of screening for recurrence in terms of reducing mortality, collusion between the anxious patient and the physician wanting to allay that anxiety may result in the performance of unnecessary and unhelpful tests in the post-acute treatment period. Health-care providers are challenged with the need to manage patient anxiety while using evidence-based guidelines in their care. Over and above the costs of initial cancer treatment, long-term cancer survivors use health services much more than people without a history of cancer¹⁶. Health-care providers cannot ignore the health economic consequences which will accompany an aging population where a personal history of cancer will be increasingly common.

There is still a lot we do not know about long-term cancer survivorship. We need to ensure resources are put into studying the long-term consequences of newer cancer therapies where information about long-term side-effects is lacking. More generally, we need to use patient-centered approaches to study the experience of cancer survivors and research centers need to collaborate so that we can collect data as quickly as possible¹⁷. According to the Office of Cancer Survivorship at the National Cancer Institute in the USA, the definition of cancer survivorship should include family members, friends, and carers¹⁸ who can also be profoundly affected by the cancer journey. Future research into long-term cancer survivorship should include studying ways of optimizing the long-term health and well-being of carers as well as the person who was diagnosed and treated.

Conflict of interest

No potential conflict of interest was reported by the author.

Source of funding

Nil.