Understanding and Managing Long-Term and Late Effects

For most patients, the actual treatment for cancer will be short-lived. Generally, the longer the cancer experience — from the first suspicious symptom to the final treatment appointment — the longer the time needed to recover from the physical and emotional ripple effects.

The post-treatment picture can vary substantially, depending on the type of cancer and treatment, and the long-term prognosis. For example, some cancer types might require ongoing treatment or follow-up surgery, such as reconstructive procedures, leaving the patient cancer-free, but not free of cancer’s effects.

Some patients have lingering physical and emotional effects that began during treatment and continue afterward. Called long-term effects, these can include pain, neuropathy (nerve damage), lymphedema (swelling of the extremities), anxiety, sleep disturbances, cognitive dysfunction and fatigue.

Others might have issues related to cancer or its treatment that emerge months or years after treatment has ended. These so-called late effects include such issues as secondary cancers, infertility and heart, bone or lung problems.

While both adult and pediatric cancer survivors experience late effects, more is known about survivors of pediatric cancer because researchers have gathered long-term survival data for those cancer types for more than 20 years. Research into late effects experienced by adult survivors is complicated by the fact that
as people age, they develop other medical problems, or comorbidities, making it more difficult to determine if the problems are related to prior cancer treatment, aging or an interaction between the two.

Examples of late effects are that one class of medications, known as anthracyclines, as well as the drug Herceptin (trastuzumab) for HER2-positive breast cancer, can cause damage to the heart.

These are some other problems that can occur:

• High blood pressure caused by drugs that target the vascular endothelial growth factor ( VEGF).
• Lung damage from chemotherapy and/or radiation therapy to the chest.
• Osteoporosis or joint pain due to chemotherapy, steroids or hormonal therapy.
• Brain, spinal cord and nerve damage manifest- ing as hearing loss or increased risk of stroke, due to chemotherapy or radiation.
• Dental problems due to chemotherapy, bone-protective drugs or radiation.
• Vision problems due to steroids or some targeted therapies.
• Digestive disturbances due to chemotherapy, radiation or surgery.
• Lymphedema, a pooling of liquid in limbs or other body parts due to surgery or radiation to the lymph nodes
• Peripheral neuropathy, nerve damage in the hands and feet from chemotherapy, which can cause numbness, weakness or pain

The damage is usually dose-dependent: The more of a drug a patient has, the more likely he or she will have a problem. Radiation presents another heart risk, since beams aimed at the chest to fight lymphoma, breast or other cancers can also reach the heart and lungs. Radiation can weaken or scar the heart muscle or damage its valves. It also can accelerate coronary artery disease, creating rough spots in the lining of the arteries where fatty plaque can accumulate.

MENTAL CHANGES

Foggy, unfocused thinking before, during or after chemotherapy, sometimes lasting months or years, is often referred to as “chemo brain.”

Chemo brain can involve trouble with memory, focus, details, common words and multitasking. High doses of chemotherapy are particularly associated with the problem, although other risk factors include lack of sleep, depression, anxiety, stress, medications, pain and its treatments, older age and other health conditions.

Treatments for chemo brain can include psychostimulant medications and memory and attention training.

Other ways to help counteract chemo brain include keeping a daily planner, doing word puzzles, getting enough sleep, getting physical exercise, eating vegetables, following routines and avoiding multitasking.

Accepting your new normal and explaining it to friends and relatives can help, too.

SEXUAL SIDE EFFECTS

Some cancers and their treatments can have a significant effect on both sexuality and fertility, and knowing about these possibilities in advance can help patients and their doctors prepare for and choose therapies.

In addition to fear and worry, treatments can interfere with sexual activity. Patients may feel nauseated or fatigued from treatment, or may have physical problems or pain that interferes with sex due to treatment or its effects on hormones. They also may feel sensitive about changes in their bodies caused by surgery or other treatment.

Communication with your partner and choosing alternative forms of closeness can be important in supporting a sexual relationship in the face of these challenges.

In men, some treatments may cause erection or ejaculation problems. Some men experiencing these effects may benefit from supplements, medications or other treatments recommended by their doctors. Before getting therapy for cancer, men should talk to their doctors about the treatment’s anticipated effects on their fertility, and ask if they should consider preserving sperm if they want to father children after treatment.

For women, surgery and other treatments can affect physical appearance and sexual function. For example, hormonal changes may cause menstrual cycles to decrease or stop, and this can result in vaginal dryness and pain during sexual activity. Lubricants and other treatments or procedures should be discussed as options for these problems.

Because some treatments can cause problems with fertility, women who may want to have children after treatment should talk to their doctors about options for preserving their eggs.

SECONDARY CANCERS

If cancer returns, it is considered a recurrence of the primary cancer. When a survivor receives a diagnosis of a new primary, it might not be connected to treatment for the first diagnosis, or it might be a secondary cancer — one caused (or whose risk could have been increased) by treatment for the initial cancer.

A second cancer can occur for a variety of reasons, most unrelated to past cancer treatment. For example, it is well known that breast cancer survivors with BRCA mutations are at higher risk for ovarian and other cancers, and current or former smokers who have survived other cancers have an increased risk of lung cancer.

Researchers know that many patients who received a secondary cancer diagnosis experienced high doses of radiation to certain areas of the body or particular types of chemotherapy. For example, radiation is known to be a risk factor for breast cancer in women who had radiation to the chest area.

Researchers have also concluded that some late effects tend to occur within a specific time period. For example, leukemia and other blood cancers caused by some chemotherapy drugs tend to develop within several years of treatment. By contrast, the risk of developing a new solid tumor continues to increase even 10 years after therapy.

Some survivors of breast cancer who underwent mastectomy and then reconstruction using textured breast implants have developed a blood cancer called breast implant-associated anaplastic large cell lymphoma (BIA-ALCL). A specific product line associated with this condition has been recalled, but patients planning reconstruction should receive a written warning from their plastic surgeons spelling out the risks associated with implants, and should confirm that these doctors are familiar with BIA-ALCL and how to treat it.