The final day of treatment or the moment a scan shows no signs of disease are joyful major milestones for patients battling with cancer. But unfortunately, they rarely signify the end of cancer-related health issues. The emotional and physical impacts of cancer can continue for years afterward which may come as a surprise to both survivors and their loved ones. Here’s a deeper look at what many survivors face, along with tips for coping with some of the hurdles.
When treatment wraps up, many survivors feel like they aren’t actively fighting their cancer anymore, leaving them with the sense that their body is defenseless. That, combined with seeing their doctors far less often, can lead to big fears of recurrence, according to the American Cancer Society (ACS).
“I have a high chance of my cancer coming back in the first five years, and I’m still at risk for it returning,” says Jim Scott, who was diagnosed with bladder cancer in 2015. Scott says he often worries about getting sick again and becoming a burden on his family.
For some patients, fears get especially high when they have upcoming scans, according to ACS. Sometimes doctors recommend performing periodic imaging tests to ensure the cancer hasn’t returned. These tests bring a patient’s sickness to their top of mind, which can cause anxieties to bubble to the surface.
Survivors may also feel sadness because they don’t recognize their bodies anymore after all they have been through. “Maybe they had a tumor that needed to be removed, or a lumpectomy on their breast, or are now sterile after having testicular cancer. Their bodies are just different,” says Karen Winkfield, MD, PhD, a radiation oncologist specializing in health equity and community engaged research. “And that can really impact self-esteem and be hard on mental health. With a body that doesn’t feel like their own, many survivors feel particularly anxious, especially around romantic relationships,” Dr. Winkfield adds.
This was the case for Gina Costa, who was diagnosed with breast cancer in 2012 and underwent a double mastectomy. But support from her husband helped her come to view her scars as signs of life—not a defect. “The fact that my husband accepted me both before and after reconstruction surgery really helped me sustain myself during that time,” she says. “He let me know that he loved me for my inside, not my outside.”
Since there is often no visible sign of anything going on, others may assume survivors are “back to normal,” causing them to feel like they ought to be coping better than they are. The problem is, there is no going back to how things were pre-diagnosis. Many don’t know what their post-treatment life is going to look like, and it can take a while to figure that out, according to the National Cancer Institute (NCI). And survivors may feel uncomfortable bringing up any of this with their friends or family members, causing them to feel isolated and depressed.
“People aren’t always open or transparent about how they’re doing,” says Dr. Winkfield. Why isn’t it talked about? “There can be a lot of fears, myths, and misunderstandings around cancer and what causes it, which can stop people from talking about the disease, even within families,” says Dr. Winkfield. “For example, some believe it’s an automatic death sentence, and others may consider it a curse for past sins.”
Some survivors may also notice tension in their personal relationships. They may end up feeling like their friends and family members are avoiding them because they don’t know what to say. In some cases, people in their life may mistakenly feel support is no longer needed after treatment, which may cause survivors to feel abandoned. On the other hand, some may feel overwhelmed by loved ones who can be a bit smothering and overly helpful, according to the Mayo Clinic. Either side of the coin can lead to high levels of stress.
And then there are people who mean well but have unhelpful reactions to your cancer diagnosis. “I remember going back to work after my surgery, and people were crying when they saw me like I was going to die,” says Costa. “I felt my anxiety come up and had to take a step back and say those are their feelings, not my feelings.”
While they’re necessary, many cancer treatments and surgeries can have lasting physical effects on the body. “This is such a big deal that can impact so many things,” says Dr. Winkfield. “You don’t have to look sick for physical health issues to linger from your body having cancer, going through treatment, and recovering from toxicities related to the therapies.”
The most common physical issue facing survivors is fatigue. This is not the typical kind of tiredness felt after a few bad nights of sleep. It’s more severe and has a more significant impact on quality of life. Survivors may also develop heart problems, swelling in arms and legs related to the removal of lymph nodes, and even the emergence of additional cancers throughout their body months or years after the end of treatment, according to The Cancer Atlas, a website focusing on the impact of cancer around the world, created in partnership with the American Cancer Society.
There is also the physical difficulty of adjusting to a post-treatment body. For Scott, who had his bladder removed, that involved getting used to an entirely new way of going to the bathroom. “It was quite a challenge to get used to my new bladder—it took about a year,” he says. “In hindsight it went by quickly, but at the time it wasn’t so easy.”
As pervasive as these issues are, there is a path forward for survivors. Being prepared ahead of time and having the right tools in place to deal with any problems that arise can make all the difference.
It’s normal for cancer survivors to face struggles, but these tips from the cancer community may help you get through the tougher days:
Visit YourCancerStory.com to find educational information, inspirational stories, and support across all phases of the cancer journey.