- There is no single agreed definition of what the term “cancer survivor” includes.
- Generally, it refers to someone who has had initial treatment and is either in remission or living with cancer.
- The population of cancer survivors continues to grow with an aging population and improved treatments. In developed countries, over 50% of cancer patients now live 10 years or more.
- Many “survivors” don’t like the term as it tends to be loaded with meaning. No alternative has been agreed upon.
- Cancer survivors face a myriad of emotional and physical challenges after treatment ends, with some studies indicating that 45% of survivors consider the emotional aspects of cancer harder to deal with than the physical aspects.
- The fear of cancer recurrence is a source of anxiety for many survivors.
- Lifestyle factors such as diet and exercise are associated with lower rates of recurrence.
What is a “cancer survivor”?
There is no one agreed definition of what it means to be a cancer survivor. Some organizations cast the net very wide, defining a survivor as anyone living who has cancer currently or previously had cancer. Some even go further to include those who have been affected by a cancer but have not had the disease themselves. These definitions are in our view too wide as they capture those recently diagnosed with cancer and who are having treatment as well as those who are in the terminal phases of the disease and not expected to live much longer (not to mention those who have never had the disease). Including these groups seems to contradict the word “survive”.
"There is no single agreed definition of what a cancer survivor is"
In our view, a better definition is given by the UK’s National Cancer Survivorship Initiative – a cancer survivor is someone who:
- has completed initial cancer management and has no apparent evidence of active disease; or
- is living with progressive disease and may be receiving cancer treatment but is not in the terminal phase of illness (last six months of life); or
- has had cancer in the past.
Cancer survivorship statistics
Cancer survivorship is directly linked to [cancer treatment] –better treatments lead to better outcomes and more survivors. In developed countries, the number of people surviving cancer for 10 years or more is now above 50% and has doubled in the last 40 years. This is largely due to better treatments and earlier detection (cancer is much easier to treat when caught early and when it is confined to a single location).
However, this overall improvement belies a more complex picture. While huge progress has been made for some cancer types (e.g. breast, prostate, testicular), there has been much less progress in others (e.g. pancreatic, brain, lung).
Thus, while a considerable amount of progress has been made, there is still a long way to go before cancer is eradicated (e.g. polio) or controlled (e.g. HIV).
Issues with the definition of cancer survivor
Many who meet the definition of survivor do not like the term. The reasons vary but for many the word indicates a harrowing experience that one merely survives and seems to ignore the fact that many actually thrive with or after cancer. We have some sympathy for this given our strong view that there is actually a lot patients can do to re-empower themselves after a cancer diagnosis (see our Video Series for more on this). We encourage patients to take an active response to their cancer, and the Curve.life project aims to help them do just that.
Another area of criticism is that the term potentially ignores the huge variation in experience that cancer patients have. At one end of the spectrum are those in a non-life threatening situation who are cured with relatively minimal interventions. At the other end are those who endure years, sometimes decades, of treatments with very serious side effects. Those at this end of the spectrum, very understandably, often feel their survivorship is of a different kind to those at the other end.
There is also a cultural idea of a survivor that many find unhelpful. That is that the ideal survivor is brave and committed to “fighting” or “beating” the disease, to “never giving up”, to accepting all suggested treatments no matter the impact on quality of life. These “heroes” of cancer get social status and respect. It puts the onus of overcoming cancer on the patient, the implication being that this is something entirely within the patient’s control and something they can fail at. This adds pressure to patients during a difficult time and is therefore unhelpful.
The opposite viewpoint is, however, also unhelpful – that there is nothing patients can do to impact the course of disease (in medical terms this means impacting outcomes). Under this narrative, all the patient can do is focus on improving quality of life and leave treating the disease entirely to their doctors. Although we are sympathetic to the reasons that lead to this viewpoint, it is not supported by the scientific literature, which indicates that there are things that patients can do that will either help their doctor led treatments work more effectively or act directly against cancer. In other words, there are things patients can do to improve their position. In statistical terms, this means getting to the right tail of the bell curve.
We are not suggesting for a moment that patients are solely responsible for their outcomes, rather that a combination of lifestyle changes and carefully selected complementary therapies can have an impact. The extent of that impact will vary enormously from patient to patient and it is nearly impossible to predict in advance what if any impact these interventions will have. All we can say, based on the latest science and our collective experience in treating thousands of patients, is that it is worthwhile taking an active approach to treatment and recovery. Our Video Series focuses on helping patients / families achieve this.
There is a lot patients can do to help themselves after diagnosisFind out more here
The needs of cancer survivors
Cancer survivors face a number of challenges not associated with treatment. These are often most acute after primary treatment ends and patients find themselves outside of the system and trying to get back to normal life. Their medical needs are both psychosocial and physical.
On the psychosocial side, some patients struggle emotionally from the trauma of having to deal with a life-threatening disease. Rates of anxiety and depression tend to be higher among cancer survivors versus than the general population. This is partly driven by the fear of disease recurrence, which is a possibility for many cancer patients. Indeed, doctors talk in terms of remission rather than cure, meaning that they can’t detect cancer in the body, but it may still be there.
Anxiety levels increase when the symptoms of common ailments (colds, flu etc) reveal themselves, as they inevitably do. Most patients also need to return for periodic checkups, which typically involve a barrage of tests and then an appointment with the specialist. This is a time of acute stress for most cancer survivors, and unfortunately acts as a semi regular reminder of the previous trauma. Indeed, the emotional issues that cancer brings are often considered to be more difficult to cope with by cancer survivors than the physical issues. In one survey, 45% of respondents said this was the case, a startling figure.
It’s clear therefore that cancer patients and survivors ought to work to reduce stress. Although this is primarily to improve quality of life, there is also some emerging evidence that mental state may affect outcomes, particularly in late stage patients. This is discussed further in our Video Series.
There are also significant physical issues that cancer survivors face, which are most acute following treatment and tend to lessen over time. Almost all (94%) cancer survivors have some physical issue after treatment. Fatigue is common, as well as lymphedema and pain. Cognitive impairment is also common following many chemotherapies.
Cancer survivors often feel abandoned by the medical system once they finish treatment and the endless trips to the hospital come to a stop. It’s clear that there is a significant gap in care here and more needs to be done.
The importance of lifestyle for cancer survivors
Here at Curve.life we help patients increase their personal odds of feeling better and living longer by focusing on the things that patients / families can do to help. Curve’s videos and other supporting information are relevant both during treatment and afterwards.
This means that lifestyle factors, particularly exercise, diet and stress management, are as important to those going through treatment and those who are post treatment. This is because a good diet and exercise are associated with lower rates of recurrence. You can read more about cancer fighting foods here and learn about the benefits of exercise in our Video Series.
Cancer survivors’ networks
Many cancer survivors find connecting with others who have shared similar experiences helpful. There are many hundreds of different support groups.
In the US, the American Cancer Society provides a helpful tool for finding local support groups. In the UK, Macmillan has a s similar tool.