Beating cancer is not the end of the story. At the inaugural Cancer Survivor’s Summit this September, delegates learned that having a proper survivor care plan can make the difference between living a joyful and fulfilled life or being mired in anxiety and financial difficulties after treatment.
Today many cancer experts agree that Survivor Care Plans are an essential part of the treatment and care of their patients. A proper care plan can improve survivor’s long-term health and well-being. And without them, too many cancer survivors are “lost in transition” after they finish treatment.
“Most cancer surivivors are looking forward to leaving the cancer behind and regaining a sense of normality in their lives,” says Dr Jill Harris, an oncologist at CancerCare, one of the leading private oncology groups in South Africa. “But making the transition into the period after treatment, can bring new, unexpected challenges, including long-term side effects and ongoing medical costs.”
Dr Harris was speaking at the Cancer Survivors’ Summit, a new forum for cancer survivors that was hosted by CancerCare in association with the Cancer Alliance, a group of 22 Cancer NGOs. More than 1000 cancer survivors, medical professionals and caregivers from around the country attended the inaugural event in Cape Town this September.
Guest speaker at the event, Professor Melvyn Freeman, Chief Director: Non-communicable Diseases at the Department of Health said that survivorship is a neglected phase of the cancer care path, and there are few guidelines dealing with follow-up care. “Surviving cancer is a process of psychological graduation involving personal growth,” he commented. He added that government is in the process of finalising its national policy framework on cancer in South Africa.
Dr Harris explained that there is an urgent need to standarise and improve post-treatment cancer care. She says that, in her experience, there are three areas that survivors and their carers should consider as a starting point. She calls them the “Three F’s” of Care Planning for Survivors”.
- The Financial Burden
About three in every 10 people who recover from cancer, face financial struggles that cause ongoing mental and physical difficulties, according to research published in Cancer. It found that many cancer survivors avoid or delay medical care, miss follow-up visits and discontinue medications due to anxiety about costs.
These financial difficulties are associated with a reduction in their quality of life related to their physical and mental health, including a higher risk of depression and psychological distress. They are also more likely to worry about a recurrence of their cancer compared with survivors who do not have financial problems.
Before selecting treatments for cancer patients, Dr Harris advises oncologists to consider offering more economical options, but with similar outcomes. Treatment costs also need to be discussed with patients and they need to be involved in the decision-making process with regard to their therapy.
- Fear of Recurrence
Feeling anxious and frightened about the cancer coming back is common among cancer survivors, especially in the first year after treatment. For some people, this fear may affect their ability to enjoy life and make plans for the future. Living with this fear has been described as a “shadow over your life“.
A study presented at the European Society for Radiotherapy and Oncology (ESTRO) 3rd Forum, known as the CAESAR study, conducted in more than 6000 long-term survivors found that 13% of cancer survivors experience moderate-to-severe fear of their disease recurring, regardless of their prognosis or how long ago the diagnosis was made.
The findings point to the need for psychological support for cancer survivors, especially women, as well as those individuals who are socially isolated or aged under 60 years—all of whom face triple the risk for severe fear of recurrence compared with other cancer survivors.
In addition to this Dr Harris feels that survivors should look at doing a genetic test to determine their susceptibility to relapse, if they qualify for this. The results can impact on the care of cancer survivors substantially – even long after their initial oncology treatments, and can also lead to testing and initiation of clinical care for their relatives.
According to the National Cancer Institute in the US persistent fatigue is a long-term adverse effect experienced by 30% to 40% of patients cured of cancer and may persist for years following cancer treatment. While the cause of this among cancer survivors is not yet fully understood, accumulating evidence suggests that an imbalance between the “fight and flight” response and the “rest and digest” system, chronic inflammation, an imbalance in the mitochondria—the “energy factories” of the cell—could cause chronic fatigue.
Exercise training interventions have been shown to be some of the more successful treatment options in addressing cancer-related fatigue. Dr Harris believes the combination of exercise and cognitive therapy—that focuses on how thoughts, beliefs and attitudes affect feelings and behaviour—and coping skills training are a good strategy for survivors battling with fatigue.