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 – instead, they are living with cancer. Others want to put their cancer experience behind them and move on with their lives. But some embrace the word “survivor”. They feel as if their mind and body have been pushed to their limits due to the stress of diagnosis and treatment.
Cancer will impact everyone in a different way. Some common themes that people may experience after cancer include: being more appreciative of life and of themselves, feeling more anxious about their health, and not knowing how to cope after treatment ends. To put it simply, your cancer journey will not end once you have completed treatment and been declared NED (no evidence of disease). Cancer will typically have a profound impact that lasts for years, if not for the entire life of the person affected. For this reason, it is important for all survivors to have access to resources to help them navigate life after cancer.
According to the Canadian Cancer Society, there are currently more than 1 million cancer survivors living in Canada. Although this is a promising statistic which has come about thanks to early diagnosis and improved treatments, it is unfortunately also a reflection of just how many Canadians have been diagnosed with cancer.
In fact, the majority of people diagnosed with cancer today will be long-term survivors. With more cancer patients surviving, there is a need for specialized services to help survivors deal with the side effects of treatment and cancer itself, which may be debilitating at times. This is why the following sections address survivorship as well as rehabilitation.
Many Canadian studies have shown that there is a lack of access to timely information and support for survivors across the country. Our health system often focuses on the strictly medical side of cancer – but patients are not defined by their cancer, and it is important to treat them as such. Cancer can have long-term physical, psychological, and emotional effects on a person. Unfortunately, these survivorship issues are often considered to be less important than the actual treatment of the cancer.
Let’s take a moment to 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 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 refers to the period when years have passed since cancer treatment ended and recurrence seems unlikely. It is at this point that 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 phases 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 its 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, such as a loved one or a counselor.
- Practicing mindfulness of the present moment and all that is good about it, instead of focusing 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 healthcare and lifestyle choices, while being aware of and accepting the things you cannot change, can empower you to stay positive.
 “Pan-Canadian Framework for Cancer Survivorship Research”, Canadian Cancer Research Alliance, 2017. http://www.ccra-acrc.ca/index.php/publications-en/strategy-related-publications/item/pan-canadian-framework-for-cancer-survivorship-research
 “Life after cancer treatment”, Canadian Cancer Society, n.d. https://www.cancer.ca/en/cancer-information/cancer-journey/life-after-cancer/
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