When you’ve been diagnosed with cancer, everything changes. “After a cancer diagnosis, you see the world through a different lens. You can’t turn back,” says Elyse R. Park, PhD, MPH, a psychologist at Mass General Cancer Center’s Cancer Survivorship Program and creator of the Mind Body Program for Cancer Survivors. “The way you see things is forever changed.”
That change can bring challenges, to be sure. But there is often a lot of good on the other side, too. Here’s what to expect as you look toward cancer survivorship.
When are you considered a cancer survivor? That’s partly up to you. The National Coalition for Cancer Survivorship uses the term “survivor” to mean anyone who has been diagnosed with cancer. That means you can describe yourself as a survivor from the first moment of diagnosis.
But many people find that definition confusing, Dr. Park says. “When you’re newly diagnosed or receiving active treatment, your focus is often different.”
Often, people don’t feel like “survivors” until later. For many, that label feels right after their initial treatment ends. In some cases, those people have reached a point where they are cancer-free. Sometimes, they call themselves “cur-vivors,” Dr. Park says. In other cases, people are living long-term with cancer, sometimes taking treatments to manage their illness as a chronic disease. Some of those people refer to themselves as “meta-vivors,” she adds.
In other words, there’s not one right way to describe yourself as a cancer survivor. If you’ve been diagnosed with cancer, you can choose the term and timeline that feels right to you. It’s also okay if you never want to use that term.
As cancer screening and cancer treatments have improved, more and more people are living their lives after a cancer diagnosis. According to the National Cancer Institute, there were 18.1 million cancer survivors in the United States as of January 2022—making up 5.4% of the population. Experts predict that number to grow to 22.5 million by 2032.
That’s a lot of cancer survivors—and no two will have the same experience, Dr. Park says. After cancer, people can experience physical side effects from the disease itself or from treatment. Those side effects can vary widely, including pain, fatigue, sleep issues, sexual health troubles, or infertility. They may experience difficulties with joints, tissues, and organs. Problems with learning, memory, and attention are also common.
The physical side effects—and how long they last—depend on the type of cancer and type of treatment you had. “Some are short-term, and some are longer-term,” Dr. Park says. “But there are resources available to help you manage them.”
Emotional side effects are also very common for people who have survived cancer. And they don’t always show up when you’d expect. “Psychologically, the toughest part of having cancer doesn’t often happen until many months after the initial treatment,” Dr. Park says. “Suddenly the structure of the cancer treatment isn’t there, and people are returning back to their lives. They might be doing well physically, but feel terrible emotionally,” she says.
If that happens to you, try to remember it’s a normal part of the cancer experience. And it can help to know what to expect. Emotional difficulties after cancer often fall into several categories:
Relationships with friends and family members can also change a lot after cancer. “It’s really common that people are disappointed by their support system. There might be someone you thought you could depend on, and you found out you couldn’t,” Dr. Park says. If you catch yourself dwelling on that disappointment, try to focus on the good instead: Who could you count on? Who stepped up when you least expected it?
There are a lot of reasons it can be hard for someone to be there for a loved one with cancer. They might be scared or stressed or have practical challenges like work demands. Instead of focusing on what they didn’t do, consider the things that might have kept them from stepping up.
Cancer can impact relationships in other ways, too—especially romantic relationships. If your partner was your primary caregiver during treatment, it might be hard to regain a romantic relationship. Your sex life might be affected by physical changes to your body (and your feelings about those changes). Such changes can be hard to navigate. If you have trouble talking about these things with your partner, a relationship counselor or psychologist could help.
Cancer survivors can face a lot of ups and downs as they move forward from their diagnosis. But you don’t need to ride that rollercoaster alone. Talk to your doctors, nurses, and hospital social workers to find the help you need. “There are so many resources for supportive care needs, including lifestyle programs, psychological treatments, and help for sleep, physical side effects and sexual health,” Dr. Park says.
And don’t be afraid to ask for help with other health behaviors, she adds. She often works with patients who are trying to quit smoking after a cancer diagnosis. People with cancer are often embarrassed or ashamed to ask for help quitting tobacco, alcohol or other substances, she adds. But judgment-free help is available. “Don’t feel ashamed about working on health behaviors,” Dr. Park says. “There’s no survivor template on how to be healthy. You get the opportunity to figure that out yourself.”