When Don Ronan, a 40-year-old Connecticut salesman and father of three, found out that chemotherapy had put his Hodgkin's disease in remission, he was ecstatic. "The CT scan showed that it was gone from my pelvis, my stomach, my bone marrow. I was cancer-free," he says. "I didn't feel broken anymore."
Ronan has made the momentous crossing from cancer patient to cancer survivor. Now he enters follow-up care, a stage familiar to almost 10 million other Americans who have beaten the disease. When cancer treatment ends, a survivor still undergoes regularly scheduled medical exams and tests to check for signs that the cancer has returned or spread to another part of the body. Doctors also screen for other types of cancers and watch for side effects from cancer treatment. During this important period, patients can work with their doctors to keep an eye out for new problems, cancer experts tell WebMD.
Surviving cancer is a blessing. "But it comes at a cost," says Mary McCabe, RN, MA, director of Memorial Sloan-Kettering Cancer Center's Cancer Survivorship Program, which develops medical and psychosocial services and educational programs for cancer survivors. While radiation and chemotherapy can offer a cure, they can also create side effects, such as fatigue or infertility -- or even new cancers a decade or two down the road. Through follow-up, "we want to make sure that we minimize the serious side effects that may occur," she says.
Follow-up Care Is Individualized
The period after cancer treatment is fraught with distinct stresses. "When patients finish therapy, they're exhausted physically and emotionally," McCabe says. What's more, there are no more treatments to go through; no more intensive contact with doctors; no more battle mentality. Instead, the follow-up period involves watchfulness, and a cancer survivor may feel dread before appointments or during the anniversary of a cancer diagnosis.
Ronan says that Hodgkin's disease, a cancer of the lymph system, changed his outlook on life. "I'm nervous about tomorrow," he says. He'll need follow-up appointments about every three months for the first two years, then less frequently. He'll also require follow-up scans.
Follow-Up Exams May Be Frequent
In general, survivors see their doctors for follow-up exams about every three or four months during the first two to three years after treatment, according to the National Cancer Institute. But follow-up schedules vary from person to person, depending on one's age, general health, the type of cancer, the treatment received, and other factors. "Different standard approaches depend on the intensity of treatment and the chance of recurrence," says Derek Raghavan, MD, PhD, who serves as chairman of The Cleveland Clinic Taussig Cancer Center.
Many, but not all, patients will require testing. That, too, is individualized. Common follow-up tests include: imaging procedures (such as CT scans, X-rays, and ultrasound); endoscopy (inserting a thin, lighted tube into the body to examine organs), and blood tests.
Many patients will receive follow-up care from their oncologist, the cancer specialist who treated them, while others will get follow-up care through another doctor, such as an internist or gynecologist.
During follow-up, doctors also check for side effects of cancer treatment. Three months out of chemotherapy, Ronan says his side effects have been limited to skin discoloration on his arms. But his doctor will also watch for effects of chemotherapy that include increased risk of infection, organ damage and infertility.
Some risks from cancer treatment can show up a decade or more later. In Hodgkin's disease, leukemia can develop five to 10 years after chemotherapy. Also, lung, breast, or stomach cancers can occur 10 or more years after treatment. In another example, women who have undergone chest radiation face increased risk of breast cancer. "They needed to have mammography done at more frequent intervals," McCabe says.
Because cancer treatment can cause pain, fatigue, swelling of limbs, sleep disturbances, premature menopause, and other problems, survivors may benefit from other forms of follow-up care, too. For example, some will need physical therapy to restore lost mobility, while others will require pain management, infertility treatment, or counseling for depression.
Get Active in Your Follow-Up Care
During follow-up, a cancer survivor's cooperation is key, Raghavan says. "It's important not to miss appointments." Follow-up also allows survivors a chance to take part in their own care and to regain a sense of control that they lost during treatment. They may want to ask their doctor the following:
- How often should I come in for follow-up appointments?
- Which follow-up tests do I need? How often?
- What symptoms should I watch for? Which ones might show that cancer has come back?
- Whom should I call if I see these symptoms?
- What can I do to relieve pain related to cancer treatment?
- Do I need to see any other doctors?
- What are the potential long-term effects of my cancer treatment?
- Where can I get reliable information about my type of cancer?
Knowledge is power, so Raghavan strongly urges survivors to read up on their cancer. "Educated patients are much better consumers. They should go online to reputable sources that have good information."
Bob Hammer agrees that patients must be active on their own behalf. When the 37-year-old California man had a recurrence of testicular cancer during his follow-up phase, he got savvy fast. When his doctor suggested surgery that would render him unable to have children, Hammer turned to the Internet.
"You should do a lot of investigating and ask lots of questions," he says. "Make sure you're comfortable with what's being recommended. It's not a foregone conclusion that you have to do what the doctor says." Armed with information, he switched to a new doctor who successfully treated him with chemotherapy. Had Hammer listened to the first doctor, "My 2-year-old Joshua wouldn't be here today," he says.
Symptoms Worth Reporting
During the follow-up period, it's crucial for survivors to tell their doctors about any physical and emotional changes, McCabe says. According to the National Cancer Institute and the American Cancer Society, cancer survivors should report the following:
- Any symptoms that create concern that cancer has come back
- Pain, especially pain that does not go away or occurs in the same place
- Lumps, bumps, or swelling
- Unusual bleeding, rashes, or bruises
- Fever or cough that doesn't go away
- Physical problems that are troublesome or affect daily function, such as fatigue, weight gain or unexplained weight loss, difficulty sleeping, or loss of sex drive
- Emotional problems, such as anxiety or depression
- Other medicines being used, as well as vitamins, herbs, and complementary or alternative treatments
"Patients shouldn't place all responsibility on follow-up visits to identify recurrences, new cancers, or complications of treatment. In fact, patients are often the first ones to notice that something is wrong. They must act, McCabe says, especially if they're worried that the problem could be cancer-related. "Between visits, if there's something that causes you concern, either a psychological problem or a physical problem, you should call and make an appointment," she says. "That isn't something to leave until the next routine checkup."