Survivorship

Managing Late Effects of Cancer Treatment

When treatment ends, some survivors are able to close that particular chapter of their lives. They readjust to a new normal and, for the most part, don’t experience any major health issues related to their experience with the disease. Others, however, experience side effects of treatment that last beyond the end of their therapy regimen. These are known as “late effects.”

Chemotherapy, hormone therapy, immunotherapy and targeted therapy are systemic therapies, which mean, in most cases, the drugs travel through the entire body in the bloodstream. Late effects from these treatments depend on the particular drug and how your body reacts to it. Other treatment types, such as surgery and radiation therapy, generally only cause late effects in the region that was treated. For example, if your treatment involved radiation to the head and neck, you might experience dental issues that wouldn’t affect someone who had radiation to the pelvis.

Late effects are notoriously hard to predict. Some effects may simply go away over time; others may be permanent. Some might even appear a few years later without warning. They also vary from person to person and often depend on the type of treatment and the length of time it was given, as well as the individual’s age, gender and overall health.

Ask your doctor or other members of your health care team about possible late effects you may experience based on the types of cancer treatments you had. Although you aren’t able to prevent late effects, you can take certain steps to improve your health and lifestyle that will prepare you to better handle any health issues you may experience in the years to come (see Staying Healthy & Active). Like almost all side effects, most late effects can be treated more easily the earlier they’re detected. That’s why it’s so important to stay in contact with your doctor to communicate any new health concerns.

Following are some of the most commonly experienced late effects and suggestions on how you may manage them.

Bone Loss

Many cancer treatments, including chemotherapy, hormone therapy and radiation therapy, as well as medications, can cause loss of bone mass. The loss of bone density occurs when the cells that rebuild bone are not replaced as fast as they get destroyed. As a result, bones become thin, porous and brittle. Once bone is lost, it cannot be replaced. Bone loss also occurs if a person has bone metastasis (spread of cancer to the bone).

Bone mass can be measured with a bone density scan before treatment so that your doctor can compare the results to scans taken during and after treatment. This is different than a bone scan that is designed to look for cancer within the bones. Your doctor may prescribe medications or recommend external-beam radiation therapy to relieve symptoms of bone loss. When multiple sites of painful bone metastases exist, a substance with a low level of radioactive material can be injected into a vein to relieve pain.

Tips to try:

  • Get enough calcium by eating dairy products, leafy greens and beans. Get enough vitamin D3 by eating salmon or fortified breakfast cereal. With your doctor’s approval, take supplements to ensure you get plenty of both.
  • Get your vitamin D3 level checked in your blood before starting treatments. Your number should be 30 or above.
  • Maintain a healthy weight to prevent bone loss and fractures (breaks).
  • Power walk for 30 minutes three to five times a week.
  • Wear shoes that fit well, and eliminate clutter in your home to avoid falls.
  • If possible, exercise daily to help stimulate bone-forming cells.

Cognitive Dysfunction (“Chemo Brain”)

People being treated for cancer may refer to “chemo brain” when they can’t think clearly or have trouble remembering details, such as names and dates. Cognitive dysfunction is associated with chemotherapy, but it can occur in people receiving many types of treatments. Although cognitive dysfunction is treatment-related, some people don’t experience it until months or even years after treatment ends. It has also been linked to
post-traumatic stress disorder.

Tips to try:

  • Use a daily planner to keep track of events and appointments. Make a list each day of things to do. As you complete each task, draw a line through it and go on to the next task.
  • Solve crossword puzzles or number games to strengthen your mental ability.
  • Track memory and attention problems to determine when you’re most affected.
  • Don’t multitask; instead, focus on one thing at a time.
  • Practice mindfulness and yoga for 15 to 30 minutes a day.
  • Let friends and family know you’re having trouble remembering things, and ask them to help you by repeating information.

Fatigue

Fatigue, or feeling physically exhausted, is one of the most common side effects people experience, and it continues long beyond treatment for about 30 percent of cancer survivors. In fact, the American Society of Clinical Oncology issued a guideline that recommends routine screenings for fatigue, even after patients complete their primary treatment. Treatment-related fatigue occurs primarily because the body needs extra energy to repair the healthy tissues damaged by cancer treatment. Different from the fatigue that healthy individuals feel, this type of fatigue usually lasts longer, is more severe and is unrelieved by sleep. Fatigue is treatable, though, and managing your fatigue is an essential part of your health care.

Tips to try:

  • If possible, perform regular exercise, such as walking or yoga. Power walking for 30 minutes a day, five days a week has been proven to reduce fatigue caused by radiation by 71 percent.
  • Get eight hours of sleep at night. Take frequent naps, and limit them to no more than 45 minutes.
  • Save your energy for activities that are most important to you.
  • Eat a healthy diet to help promote healing and restore your energy.
  • Seek relief for other symptoms that may contribute to fatigue, such as nausea, vomiting and depression.

Infertility

The adrenal gland, thyroid, ovaries and testes are all part of the endocrine system, which is responsible for releasing the hormones that control fertility, regulate growth and stimulate puberty. Fertility issues arise when cancer or its treatments damage any part of the endocrine system, including the area of the brain that controls it. Damage to the endocrine system may cause temporary infertility (lasting months or even years) or permanent infertility. Because chemotherapy and radiation therapy are known to damage reproductive cells, people who underwent these treatments are at a greater risk for infertility, whether temporary or permanent. Higher doses and longer treatments typically result in longer periods of infertility and increased risk of permanent infertility. Surgeries to remove both testicles, both ovaries or the uterus also result in permanent infertility.

Tips to try:

  • If you haven’t been evaluated since treatment ended, ask your doctor about testing to see if your fertility was affected.
  • Explore other options for parenthood, including adoption or the use of an egg, embryo or sperm donor.

Lymphedema (Swelling)

Your lymphatic system carries white blood cells throughout the body to fight infections. When lymph nodes are removed by surgery or damaged by radiation therapy, infection or the cancer itself, lymph can build up, which can cause swelling in the area where the lymph nodes were removed, including the arms, legs, face, neck, abdomen and genitals. Along with swelling, the part of your body that is affected may feel tight or hard, and you may notice tingling, a lack of flexibility or discomfort. When lymphedema occurs months or years after cancer treatment, it is referred to as chronic lymphedema.

Tips to try:

  • Wear loose clothing or jewelry on the affected side, and carry your handbag or briefcase on the unaffected side.
  • Wear compression garments or tight bandages designed to apply pressure to the swollen area that have been specifically prescribed and fitted for you by a certified lymphedema therapist.
  • Elevate the swollen limb.
  • Ask your medical team to refer you to a certified therapist trained in ways to manage lymphedema, such as manual lymphatic drainage or complete decongestive therapy.

Neuropathy

Neuropathy is pain or discomfort caused by damage to the peripheral nervous system, which includes the nerves that control movement and feeling in the arms and legs. Symptoms include numbness, pain, burning, tingling or loss of feeling in the hands or feet. Many types of treatment can cause neuropathy. If you are taking a medication that is causing neuropathy, your doctor may switch to a different drug, change how the drug is given or prescribe pain medicines, steroids, numbing creams or lotions.

Tips to try:

  • Avoid tight clothes.
  • Wear comfortable shoes.
  • Keep your hands and feet warm, and avoid standing or walking for a long time.
  • Track your symptoms in a journal. Write down when they happen, how long they last and how intense they are so you can share the information with your health care team.
  • Ask your doctor for a referral to cancer rehabilitation.
  • Ask your doctor for medication designed to minimize severe neuropathy symptoms.

 

Considering Cancer Rehabilitation

Health care professionals work as a team to provide rehabilitation care, which helps patients improve their physical strength, including function and movement, increase their ability to care for themselves and assist in the management of pain and other symptoms. Your cancer rehabilitation team is usually supervised by a physiatrist, a medical doctor who specializes in rehabilitation, and may include several health care professionals, such as physical and occupational therapists, rehabilitation nurses, speech therapists, mental health professionals, lymphedema specialists and dietitians.

The majority of cancer survivors would benefit from some level of rehabilitation services and treatment, but very few are actually referred to rehabilitation. In recent years, however, more emphasis has been placed on making rehabilitation services more readily available for patients and survivors in need. In 2012, the Commission on Cancer (CoC), a nonprofit group overseen by the American College of Surgeons, made the availability of a rehabilitation program a mandatory requirement for a cancer center to receive the accreditation. In 2016, the same group published “Ensuring Patient-Centered Care” in its Cancer Program Standards, which included a set of policies and procedures designed to ensure patient access to rehabilitation services either on-site or by referral.

With increasing awareness and availability of rehabilitation programs, more survivors are able to successfully work toward regaining physical health, achieving mental and emotional well-being, and experiencing the relief of once again becoming more self-reliant.

 

 

Neutropenia (Low White Blood Cell Count)

Neutropenia occurs when your body doesn’t produce enough neutrophils, a type of white blood cell. Neutropenia puts your body at a higher risk for infection. Nearly half of all people receiving chemotherapy for cancer have neutropenia. If your treatment plan included chemotherapy, your doctor will likely schedule regular blood tests to monitor for it. If chemotherapy-related neutropenia occurs with a high fever, or if you have extremely low neutrophil counts, your doctor may prescribe white blood cell growth factors that stimulate the bone marrow to produce more white blood cells.

Tips to try:

  • Call your doctor if you have a fever. Your doctor will tell you how high your fever needs to be for you to call.
  • Wash hands frequently and practice good hygiene to help prevent infections.

Pain

Diagnostic procedures and treatments may cause different types of pain. After surgery, pain is usually felt in the area of surgery but tends to lessen as the body heals. The pain or discomfort caused by chemotherapy and radiation therapy can be mild to severe and may end when treatment ends. Sometimes, a hormone imbalance or treatment-related nerve damage may contribute to chronic, or persistent, pain.

Common side effects of cancer and cancer treatments, including loss of motion, lymphedema, peripheral neuropathy and osteoporosis, can be other sources of pain.

Untreated pain, even if it’s minor, can get out of hand quickly. That is why it’s so important to let your health care team know right away if you’re in pain. Some people don’t want to seem as if they’re complaining. Others may be fearful that new or worsening pain indicates progression or return of their cancer, which is not necessarily true. In all cases, though, it is very important that your health care team know what is happening. Reporting pain is the first step to feeling more comfortable and having a good quality of life.

You can help manage your pain by explaining it in detail to a member of your health care team. The more you share about your pain, the better they will be able to help you. Once they understand your pain, they can recommend one or more options for managing it, which may include pain medications, percutaneous pain techniques, targeted drug delivery, neurosurgical procedures and/or rehabilitation care.

Tips to try:

  • Track when your pain occurs, where it occurs, for how long and if anything makes it better.
  • Take pain medications exactly as directed by your doctor. This is known as medication adherence and includes taking the correct dose at specific times.
  • Consider integrative therapies, such as guided imagery, yoga, acupuncture and massage therapies.

Sexuality Issues

Cancer and its treatment often affect how people feel about their bodies and how they relate intimately to their partners. Cancer-related sexuality issues are most likely to occur in people who have had treatment directed at their reproductive organs or sexually-related body parts, like a woman’s breasts. A lack of sexual desire and reduced feelings of desirability are common sexual issues for both men and women with cancer. Many people are too embarrassed to speak up about sexual health issues; however, sexual health contributes to quality of life, so do your best to push past the awkwardness and talk to your doctor about any sexual difficulties you’re experiencing (see Reclaiming Sexual Health).

Tips to try:

  • Attend counseling and/or sex therapy (individual or couples) to help you process the emotions surrounding sexuality issues.
  • Exercise to help reduce menopausal symptoms in women and to enhance interest in sex and feelings of desirability.
  • Communicate openly with your partner about ways to be intimate other than sexual intercourse.
  • Use a vaginal moisturizer daily and personal lubricant during sex to relieve vaginal dryness.
  • Ask your doctor about medications for erectile dysfunction.
  • Redefine being “sexually active” to finding other ways to express intimacy, in addition to having intercourse.

Common Late Effects By Treatment Type

  Chemotherapy
  • Bone loss
  • Cognitive problems
  • Constipation
  • Diarrhea
  • Fatigue
  • Fever
  • Infertility
  • Neuropathy
  • Neutropenia
  Immunotherapy*
  • Cognitive problems
  • Fatigue
  • Fever
  • Skin reactions
  Radiation Therapy
  • Bone loss
  • Cognitive problems
  • Diarrhea
  • Fatigue
  • Infertility
  • Lymphedema
  • Skin reactions
  Surgery
  • Cognitive problems
  • Fatigue
  • Infertility
  • Lymphedema
  • Pain
  • Sexual issues
  Targeted Therapy
  • Constipation
  • Cough
  • Diarrhea
  • Fatigue
  • Headache
  • Shortness of breath or trouble breathing
  • Skin reactions
  *Because immunotherapy is a relatively new cancer treatment, there is not
   yet as much information available.

 

Additional Resources

 

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