Who are cancer survivors?
Different people define “cancer survivor” in different ways. Some people who have lived through cancer diagnosis and treatment don’t refer to themselves as a survivor at all, while others who were diagnosed at a later stage or who have metastatic cancer don’t believe that they are survivors – they are living with cancer instead. Some people want to put their cancer experience behind them and get on with their lives. Others embrace the word “survivor” because they feel as if they went through hell and back because of the treatment and the stress of being diagnosed with a sometimes still fatal illness.
According to the Canadian Cancer Society, there are approximately one million Canadians who have survived cancer for more than 10 years. And although this is a success story that has come about through early diagnosis and better treatments, it is also a reflection of just how many Canadians have been diagnosed with cancer, which has risen to nearly one in two.
With more cancer patients surviving, there is a need for specialized services to help survivors deal with the at times debilitating side effects of treatment and the cancer itself. This is why we have linked survivorship and rehabilitation.
Many Canadian studies have demonstrated that lack of access to timely information and support for survivors is prevalent across the country. Survivorship issues related to the long-term physical, psychological and emotional impact of cancer and its treatment seem to not be as important in our provincial health care systems as treatment.
But more about that later. First, let’s think more about survivorship.
Different organizations define survivorship in slightly different ways:
- In 1986, the National Coalition for Cancer Survivorship(NCCS) replaced the words “cancer victim” with “cancer survivor,” defining a “survivor” as someone who has been diagnosed with cancer.
- The National Cancer Institute (NCI) states that a survivor is someone who “remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease” and until the end of life.
- However, the American Society of Clinical Oncology (ASCO) does not believe that everyone identifies with these definitions of survivorship. They suggest that some people will define themselves as someone “who has had cancer” or that is “living with cancer” and that this is a unique experience for each person.
- The Canadian Cancer Society (CCS) sides with ASCO in stating that survivorship is a unique experience for each individual. However, they do define survivorship as “an experience of living through or beyond an illness” and they see a survivor as someone who:
- Was treated for cancer and now has no signs of cancer in their body.
- Has finished and is recovering from active cancer treatment.
- Is on maintenance therapy.
- Is having ongoing treatment for a cancer that is stable.
- Acute survivorship is the phase beginning with diagnosis and expanding throughout treatment.
- Extended survivorship focuses on the effects of cancer after treatment is finished.
- Permanent survivorship is another term that refers to the period when years have passed since cancer treatment ended and recurrence seems less likely. It is at this point when the long-term effects of cancer and treatment should become the focus. (ASCO)
Each of these phases is accompanied by a host of feelings and issues that are specific to each individual. You might be concerned about the cancer recurring, find yourself thinking about death and dying or experiencing financial and psychological stress. As time goes by and you enter the extended and permanent phase of survivorship, you will likely have more time to think about things and perhaps feel stressed about what has happened to you. At this point, it becomes very important to have adequate support in place and to be well informed about the cancer you were diagnosed with and the side effects of treatment. Some recommendations to help you stay positive and grounded include:
- Understanding that other than continuing to take your medications and making any lifestyle changes that might help, you do not have control over whether the cancer recurs or not. Accepting this helps more than fighting it.
- Communicating fears and worries with someone you trust, or with a counsellor.
- Practicing mindfulness of the present moment and all that is good about it instead of focussing on the past and the possibility of cancer coming back may also help.
- Trying to make healthy choices, such as active living and exercising or quitting smoking may help, but don’t criticize yourself if you temporarily relapse.
- Control what you can. Taking control of your health care and lifestyle choices can empower you to stay positive.