When it comes to talking about cancer, a lot of emphasis is placed on prevention, early detection, and breakthrough therapies. One place the spotlight rarely shines is on the daily lives of survivors. This group of brave men and women is not a small population. There are close to 17 million cancer survivors in the United States, according to the National Cancer Institute (NCI)—a number that continues to grow as more cancers are caught early and treatment options improve. But what does it really mean to be a survivor? While no two stories are exactly the same, some shared threads run through their experiences.
The most common way to define a survivor—and how organizations like NCI do it—is to include anyone who has been diagnosed with cancer. That includes those actively going through treatment as well as those who have completed it. “Some people say being a survivor starts after treatment, but what does that mean?” says Karen Winkfield, MD, PhD, a radiation oncologist specializing in health equity and community engaged research. “Is it the last day of treatment? Six months afterward? From my perspective, once you have a diagnosis and begin that journey, you’ve moved into survivorship.”
That is definitely how Jim Scott saw himself when he was diagnosed with bladder cancer in 2015. “When I was initially diagnosed with cancer, my wife, two sons, and daughter-in-law were in the room with me,” he says. “The doctor said I had cancer, the room got quiet, and I looked around and said ‘Wait a minute! I’ve got cancer but cancer doesn’t have me!”
But not everybody wants to be called a survivor. “It can imply that something has happened to them—like they’ve survived a hurricane—and can make them feel like they have no control,” says Dr. Winkfield. “Some people prefer saying they are living with cancer or that they are a cancer thriver, it just depends.” When in doubt, she recommends asking the person what they prefer.
The word “survivor” implies a battle has been won, with no more challenges left to face. But that’s not the reality for cancer survivors. According to a study in the North Carolina Medical Journal, they are twice as likely to report emotional health issues, including stress and anxiety, as people who have never had a cancer diagnosis. And this remains true even post-treatment.
One big source of anxiety: Constantly wondering if the cancer is going to return. Because patients see their doctors a lot less often than they did during treatment, they can feel a lot of uncertainty about the future, according to NCI. “For most patients, there will always be a thought in the back of their heads about recurrence,” says Dr. Winkfield. “They feel an ache and wonder if it might be cancer.”
This is definitely true for Scott, who underwent successful treatment after his cancer diagnosis. “I was told I had a 70 percent chance of it coming back in the first five years,” he says. “I mostly stay positive, but I am concerned about getting cancer again and what it would do to my family.” On top of fears over recurrence, survivors can also feel guilt that they survived, worry about discrimination at work, and stress about new relationship problems that weren’t there before, according to NCI.
Some cancer survivors also face body dysmorphia. “This is especially true if you had surgery as a part of your care,” says Dr. Winkfield. “Your body is different than it was before, and those changes can really impact self-esteem and, if you had something like breast or testicular cancer, your sexuality.” On top of that, some physical health issues can linger long after treatment is done.
Making these issues harder for survivors to deal with is the fact that most don’t feel like their doctors prepared them for what was to come. They end up wishing they had been better informed about how to handle the long-term effects of cancer treatment, according to research conducted by the National Coalition for Cancer Survivorship (NCCS) and the Association of Community Cancer Centers (ACCC). And because survivors often have no outward signs of what they are going through, it’s easy for others to just assume everything is fine. “People may expect survivors to just keep doing what they’ve always done or be the same person they always were,” says Dr. Winkfield. For many, that’s impossible. Cancer can forever change who you are.
While being a survivor can feel incredibly lonely, it doesn’t have to be that way. “Some people have no interest in joining a support group, but others can find it really helpful to have other survivors to talk with,” says Dr. Winkfield. “It comes down to who they are as an individual and how the support group functions.” This is a key step Scott has taken to help him stay positive. “Family and friends are very important, but there are things you can only talk about with other cancer survivors,” he says. “You see that other people are doing okay, and you can really discuss your feelings.” To find one, NCI recommends survivors look into cancer support groups offered by their hospital, speak to other survivors for recommendations, or visit their online database.
Another way Scott has helped create a community around himself is to become an advocate and educator. “I have traveled the country speaking about my journey with cancer to clinicians and patients—anyone who will have me,” he says. “I’m also on an advisory panel for Black Men’s Cancer Action Council—it’s all therapy for me.” Helping others on their cancer journey can give survivors a sense of purpose, according to Dr. Winkfield. “It’s not a good thing to have cancer,” she says. “But if you’re willing to use your experience to inform and help others, it may allow you to make some good things happen from an otherwise bad situation.”
Want to learn more about survivorship? Visit YourCancerStory.com to find educational information, inspirational stories, and support across all phases of the cancer journey.