Remission. Aside from cure, it’s the word that most people with cancer want to hear from their oncologist. But what does it mean, and what are its implications in the long run for survivorship?

Remission means that cancer can no longer be detected, says Marleen I. Meyers, MD, clinical associate professor in the Department of Medicine and director of the Survivorship Program at NYU Langone Health’s Perlmutter Cancer Center. However, it is important to remember that remission is not the same as a cure.

“It is very important for patients to ask their provider when they use terms like remission or cancer-free, what exactly does that mean?” Dr. Meyers says. “Patients may not know what remission means; they only know that it’s a good word. They need to understand that except for the word cure, remission does not mean that their cancer will never come back.”

Cancer Surveillance Is Important for People in Remission

As a result, patients in remission still should be followed for recurrence of cancer, Dr. Meyers says. Cancer can recur in the area where the original cancer was located or elsewhere in the body. Surveillance will be individualized depending on the type of cancer a person has.

Oncologists know that certain tumors recur within five years—either in the original area or at metastatic sites. For patients with these tumors, most of the intense surveillance, which can include follow-up scans, physical exams, or blood tests, will be carried out over those five years. Other cancers can recur after 10 years or sometimes even later, so a person may continue to have surveillance for a longer period of time.

Dr. Meyers says people in remission should be hopeful, but they also should be realistic and keep in mind that remission does not necessarily mean the cancer is not going to recur. This is particularly true when interacting with friends and family members, who often celebrate the remission with the patient. Patients should talk to their family members and loved ones and explain that while they have reached this very important milestone, they must continue to be followed for recurrence.

“Certainly, it is much better to be in remission than not. It’s a very important first step, but I think one also has to be realistic about what that means,” Dr. Meyers says. “It’s very important to continue to maintain being observed for recurrence.”

During the surveillance period, people in remission often ask for frequent scans, but it is important to follow the established guidelines to avoid unnecessary scans and blood work, Dr. Meyers says.

“I always explain to my patients what the guidelines are, and that in fact, there is no improvement in outcome if we don’t follow the guidelines,” Dr. Meyers says. “Conducting unnecessary scans and blood work can lead to a lot of anxiety, and they can lead to new biopsies and scans that are not necessary.”

Dr. Meyers encourages her patients to report to their oncologist or primary care physician any new or different symptoms that do not go away, such as a new lump, bump, or unexplained pain, that may indicate recurrence of cancer.

Remission and Survivorship Are Often Difficult Concepts

People in remission will receive a treatment summary and survivorship care plan that explains follow-up care when they complete treatment. The most important part of survivorship, Dr. Meyers says, is for patients to understand that while the treatment is completed, the cancer experience is not necessarily over. People are often left with side effects and sequelae (chronic complications) of the diagnosis and the treatment, which can include fatigue, cardiovascular disease, infertility, and psychosocial problems.

Remission and survivorship can be difficult concepts for family and friends, Dr. Meyers says. Completion of treatment can be one of the hardest periods for cancer survivors to go through. Patients become accustomed to frequent visits to the cancer center for treatment, seeing their healthcare team often and receiving care and support from them. Once the treatment is over, and they are told to return later, patients often feel as if a rug has been pulled out from under them.

“I think one of the important things that survivorship does is it teaches and explains to people that their pre-cancer life may not come back the way it was,” Dr. Meyers says. “Even if it does, it’s going to take a long time, and they have to really give themselves time and explain to their friends and family that just because the treatment is over, it doesn’t mean they feel normal. We try very hard at the end of treatment to explain this and to let people know that it may be a few hard weeks, months, or even years before they really recover as best as they can from this. And just giving them that knowledge is often enough to make a big difference.”

Dr. Meyers discusses with patients the importance of a heathy lifestyle, which includes good nutrition, such as eating green leafy vegetables and lean protein. A problem that has grown during the COVID-19 pandemic is deconditioning and lack of exercise. Exercise is known to be important in terms of overall good health as well as reducing risk for some cancers.

Screening for cancer—and not just the one that is in remission—is important for people in remission, since patients could be at risk for other cancers. Dr. Meyers recommends annual screening for skin cancer, as well as scheduling colonoscopies and gynecologic visits. Screening for non-cancer health issues is also important, since two-thirds of cancer survivors are more than 65 years old and are at risk for diseases such as cardiovascular disease.

When cancer does recur, even if it is a cancer where recurrence is expected, patients are disappointed and frightened, Dr. Meyers says. Patients need to remember that a recurrence doesn’t mean the cancer can’t be treated, she says.

“Today, many cancers that recur can be treated for very long periods of time, for many years sometimes,” Dr. Meyers says. “Even with the recurrence, the outlook is very hopeful, and people can live for a long time.”