When you receive a cancer diagnosis, one of the first things you usually want to know is whether your cancer can be cured and how long you will live.
Although the predicted course of the disease differs for everyone—depending on the type of cancer, how far it has advanced and how aggressive it is—developments in medicine mean that more people can live longer with cancer, even if the cancer will never be cured.
“For some people, cancer is a chronic illness that they’re managing,” says UNC Health social worker Rose Wilson. “There is a mental shift from curing the cancer to identifying what it looks like to live with it. What living well with cancer looks like will be different for every person, but most are looking for a way to keep the cancer properly controlled.”
We talked to Wilson and UNC Health oncologist Jared Weiss, MD, about the physical and emotional considerations of long-term cancer care.
Identify Your Goals and Priorities
After a diagnosis of cancer, you’ll work with your care team and loved ones to identify what’s important to you in terms of treatment and quality of life.
“With a cancer that can be cured, our favorite goal is curing it,” Dr. Weiss says. “With an incurable cancer, we want to suppress cancer for as long as possible and preserve quality of life.”
Everyone will have different concerns and goals when it comes to quality of life. In general, people want more time, but they don’t want that time to be marked by unpleasant side effects or pain.
“What’s best for quality of life can depend on the aggressiveness of the cancer,” Dr. Weiss says. “Historically, we would have used the most aggressive treatment available, usually chemotherapy, to treat the cancer, but there were more side effects. Now we have other treatments, and we also know that some cancers don’t require any immediate treatment. With something like adenoid cystic carcinoma, we could do watchful observation, and someone might be able to go 10 years without treatment.”
Oncologists work with each person to consider the efficacy, risks and side effects of treatments, keeping in mind the person’s goals for quality of life. Thanks to advances in cancer treatment, these options might include targeted therapy or immunotherapy. For some people, these options can be extremely effective at controlling cancer with minimal side effects.
A therapy that’s been effective for years may stop working at some point, though.
“The energy of a person shifts physically and psychologically as treatment progresses,” Dr. Weiss says. “When a treatment stops working, some people still feel good and have a plan B treatment they can consider. Others may be ready to shift their focus to comfort care. We prioritize the person’s values, consider how they feel and educate on what’s possible for next steps.”
Stop Thinking of Cancer as a Battle or Fight
Dr. Weiss and Wilson say that the framing of cancer in popular culture complicates living with cancer long term.
“There is a portrayal of cancer in movies and television that’s overly simplistic—you’re either fighting for your life or dying with grace,” Dr. Weiss says. “Those are extremes, and people who are not as familiar with the cancer journey may think that’s the way it works.”
Adds Wilson, “Even with people who have curable cancer, we do a lot of work to disrupt the idea that cancer is a battle won or lost. Cancer is not something you win by being stronger or smarter. Your primary job is to show up and make appropriate treatment decisions with the tools available to you at the time.”
Reframing cancer in this way can be difficult; a win-lose situation is a narrative that most people understand, and it can be frustrating and scary to find acceptance in a situation that is more nuanced and complicated.
“There is not a one-size-fits-all path or a road map to living with cancer,” Wilson says. “Identify what supports you need to be engaged and present and feel supported physically and emotionally, but that’s going to be very individual, and it’s going to change based on how you’re being impacted by the disease at that moment.”
Those changes are why it’s useful to know your values and goals for quality of life.
“You build a new normal after a cancer diagnosis, and there will be many new normals along the way, with different phases of treatment,” Wilson says. “At some points, you’ll have more decision-making power, and at other points, the decisions may shift. It’s hard to adjust to losing control, so it’s important to focus on what’s in your control and what’s not at any given moment.”
Tend to Other Areas of Your Life
When your cancer is controlled, you can expect to have regular monitoring, including labs and imaging.
“I want to find a problem before the person can feel it, so that’s why we’ll do regular scans to see if treatments are working or if the tumor is growing,” Dr. Weiss says. “It gives us more of an opportunity to adjust treatments.”
Even with regular monitoring, you may have fewer visits with your oncologist, and that can be a significant transition.
“When you’re used to having multiple appointments a week, there is a sense that you’re taking care of your cancer,” Wilson says. “When those fall off, and you’re only seeing your oncologist every few months, or every year, there can be an increase in anxiety. You may worry about a lack of someone checking in on you and ensuring you’re OK.”
Dr. Weiss and Wilson suggest that when you’re not in active treatment, you can focus more broadly on your health.
“During cancer treatment, it’s easy to ignore other conditions,” Dr. Weiss says. “Not everything that affects a person’s health is cancer.”
Wilson recommends that you reconnect with a primary care doctor if you stopped seeing one during cancer treatment.
“It can be really helpful to have someone to triage [assess] symptoms and worries that aren’t through the lens of an oncology team,” she says. “It’s also good to get care at a place other than a cancer hospital.”
Finally, try to enjoy daily activities without worrying about the cancer.
“There are times when a family’s world has to pivot around treatment, but it’s important to feed other parts of yourself,” Wilson says. “Prioritizing other parts of life benefits stamina and well-being, for both the patient and the caregiver.”
Seek Support
To deal with the mental and emotional issues of chronic cancer, you may wish to speak to a therapist, a clergy member or a support group. National cancer organizations have “buddy programs,” in which both patients and caregivers can be paired with someone who understands the concerns of a particular cancer.
“It’s helpful to have a community and talk to someone who gets what it’s like to live in this world,” Wilson says. “I do caution people to not jump into a lot of online support groups or internet forums. It can really overwhelm your social media feeds and affect how you’re receiving information.”
At some stages, you may need to put limits on how much others talk to you about the disease.
“It’s OK to text a friend that you’ll be seeing and say that you don’t want to talk about cancer,” Wilson says. “Part of this process is being aware of what your needs are in a given phase and articulating those boundaries.”
If you have young children, you may need specialized support; a therapist or counselor, for example, can be a sounding board for the nuances and uncertainties of your chronic cancer care. UNC Health’s Parenting with Cancer Clinic offers parents the chance to meet with a psychologist and a lawyer to discuss how to best support children in the process and prepare for their future. Talking about cancer with children depends on their age, but in general, Wilson says to be honest and direct.
If you have questions about living with cancer, talk to your doctor. Need a doctor? Find one near you.