Getting Well After Cancer

When cancer treatment ends, the period of transition brings with it new exploration into how cancer has affected you both physically and emotionally. While some survivors emerge from treatment with few physical effects but struggling emotionally with spiritual and existential questions, others may experience just the opposite­—pointing out yet again that each survivor is unique in his or her experience. Transition may also be a time of searching for meaning in the cancer experience and for new attitudes toward living that include embracing lifestyle or other core changes.

Each cancer survivor will have a unique set of physical reactions determined by the kind of cancer, its location, and treatment choices. These issues range from loss of body parts that necessitate prosthetic replacements, to disabilities resulting from surgery or treatment that may need ongoing attention.

According to a study by the American Cancer Society, there are some physical issues that are more prevalent for survivors as a whole. In 2008, the ACS released findings from its nationwide survey of more than 15,000 survivors who were one, three, six, or 11 years post-diagnosis at the time of enrollment.

Kevin Stein, PhD, director of the quality of life and survivorship research program for the behavioral research center at ACS, says that, while the majority of survivors are doing well a few years post-treatment, a subset of around 30 percent continues to struggle with a number of emotional and physical problems. Two of these issues, pain and fatigue, continue to plague some survivors even 11 years after diagnosis.

Pain >

More than 50 percent of survivors report pain that lasts beyond the expected healing phase, or longer than six months, which defines it as chronic pain. Untreated pain directly affects a survivor’s quality of life and ability to function.

Chronic pain can arise from several sources, such as nerve damage caused by a tumor or treatments such as surgery, chemotherapy, or radiation. In the past few years, awareness and treatment of chronic pain have increased, and the field of palliative care, the medical specialty focused on the relief of pain, stress, and other debilitating symptoms of serious illness, has now become a recognized subspecialty.

If you experience pain, the first step is to determine its source since health care practitioners have a variety of tools in their arsenal against pain, including opioids, topical medicines, nerve blocks, and alternative treatments such as acupuncture.

Lauren Shaiova, MD, director of the department of pain medicine and palliative care for Metropolitan Hospital Center in New York City, says every person has individual variability in how pain pathways are affected by medications, and it may take time to reach a balance of pain relief and manageable side effects. She recommends survivors consult with health care professionals trained in pain management and palliative care.

Fatigue >

Although fatigue may vary in intensity, approximately 90 percent of patients are affected by treatment-related fatigue, making it a more common symptom than pain or nausea. Many of the causes of treatment-related fatigue, including anemia, low thyroid function, decrease of muscle mass, sleep disturbances, and emotional distress, can be identified and treated with medication, nutrition, exercise, or all three.

Cancer fatigue is real and it's different than what healthy people feel at the end of a long day.

For some survivors fatigue persists for months or years after therapy ends, leading to a distinction between fatigue that resolves in response to rest and cancer-related fatigue as a late effect that does not.

Wendy Harpham, MD, author and non-Hodgkin lymphoma survivor, says that post-cancer fatigue has been her most challenging survivorship issue. “Cancer fatigue is real and it’s different than what healthy people feel at the end of a long day,” she says.

“And, unlike usual tiredness, post-cancer fatigue is not relieved with a good night’s rest, but rather becomes a chronic challenge of balancing work and life to function. It very much affects quality of life, but it can be managed with physical measures and with attitude.”

To manage cancer-related fatigue, Harpham recommends getting a full medical evaluation at each stage of survivorship, and optimizing nutrition, exercise, sleep, and emotional and spiritual support.

Other Physical Concerns >

Ongoing physical issues may include lymphedema, swelling that occurs as a result of removed lymph nodes; sleep disorders such as insomnia or difficulty staying asleep; or “neuropsychological” impairments such as loss of memory, difficulties with language, or lack of concentration.

What was once a series of confused symptoms among survivors is now recognized as a condition called “cognitive dysfunction,” which survivors refer to as “chemobrain.”

Some survivors complain of losing an edge required to do any kind of multitasking in daily routines. What was once a series of confused symptoms among survivors is now recognized as a condition called “cognitive dysfunction,” which survivors refer to as “chemobrain.”

After studying the phenomenon in the late 1990s, neuropsychologists came to the conclusion that breast cancer survivors treated with adjuvant chemotherapy have a higher risk of this kind of cognitive dysfunction than those who did not have chemotherapy, and that the impairment was unaffected by anxiety‚ depression‚ fatigue‚ or time since treatment.

While researchers are the first to admit they don’t know exactly what causes chemobrain, their discussions are leaning toward frontal lobe issues that are the same as those seen in regular aging. However, this is still an understudied field.

So far, studies indicate that erythropoietin, a natural substance created by the body to increase red blood cells, might protect brain cells from the effects of decreased oxygen. This information has led researchers to think that erythropoietin may be able to protect brain cells from the toxic effects of chemotherapy, which is being further explored. Also under investigation are techniques survivors can use to improve cognitive function.

The good news for survivors who underwent chemotherapy treatment is that chemobrain seems to get better with time.

Life after cancer treatment can be emotionally complicated, with each person experiencing a unique mix of emotions depending on individual beliefs, experiences, and support system. You may experience feelings of guilt, sadness, or anger. You may have issues around body image, particularly if there were physical changes as a result of your cancer. Your perception of how others see you may change as well.

Cancer can result in huge losses, which may be as tangible as a breast or another body part, or as intangible as your vision of the future. Grief is a natural response to these losses and may encompass a wide range of emotions, including denial, anger, and acceptance.

Spiritual distress may cause you to redefine previously held values and goals—or provide motivation for seeking new understanding. Another possible reaction may be emotional numbness, which finds you shutting down to protect yourself from any more feelings—or unable to feel at all.

“Cancer is associated with the other big C: loss of control. It causes anxiety because you don’t know what caused you to have cancer, and you don’t know what to do to keep it from coming back,” says Julia Rowland, PhD, director of the Office of Cancer Survivorship at the National Cancer Institute.

Anxiety can sometimes grow into fear, and several different types of fear might be present: fear of an unknown future, fear of alienation, or fear of recurrence.

The fear of recurrence can be triggered by a number of specifics: a follow-up appointment, the feeling that your medical condition is no longer closely monitored, or an unusual ache or pain.

Studies have shown that fear of recurrence can continue for years. Indeed, an American Cancer Society study indicated that of the approximately 30 percent of survivors who continue to have some long-term emotional effects even 11 years post-diagnosis, fear of recurrence tops the list.

The fear of recurrence can be triggered by a number of specifics: a follow-up appointment, the feeling that your medical condition is no longer closely monitored, or an unusual ache or pain. For most survivors, fear of recurrence diminishes over time, but its resolution varies significantly among individuals.

Cancer survivors may also experience sadness, a feeling of unhappiness in response to unexpected changes or stressful situations, or a loss that is considered a normal response to a cancer diagnosis.

Depression, on the other hand, is a clinically diagnosable disease that consists of a feeling of pervading sadness that lasts for longer than two weeks. Depression can go undiagnosed in cancer survivors because many of the emotional symptoms of cancer are similar to depression, and some people assume it is part of the cancer experience.

However, up to one-quarter of people with cancer have clinical depression, with symptoms such as anger, irritability, difficulty concentrating, feelings of helplessness or despair, the inability to experience joy, loss of interest in usual activities, muscle tension, dry mouth, trembling, restlessness, difficulty sleeping, and suicidal thoughts. If these symptoms persist over a long period of time, seek the help of a mental health professional.

In fact, a 2008 study by the Dana-Farber Cancer Institute in Boston indicated that 26 percent of early-stage ovarian cancer survivors had mental health scores that suggested post-traumatic stress disorder (PTSD), with symptoms that included nightmares, flashbacks, upsetting thoughts, difficulty sleeping or communicating, and avoiding situations that remind the person of cancer.

One irony for some survivors is finding what is called “post-traumatic growth,” the positives that follow a traumatic experience that can range from personal strength to a newfound appreciation for life. As one survivor said: “Cancer destroyed my former life and everything I once had. What it gave me was time to read, study, write, and grow spiritually. It made me a better human being.”

The National Center for Complementary and Alternative Medicine (NCCAM) at the National Institutes of Health defines integrative medicine as combining conventional treatment with complementary and alternative medicine (CAM) for which there is evidence of safety and effectiveness. While CAM refers to both complementary therapies (those used in conjunction with conventional medicine) and alternative therapies (those used instead of conventional treatment), the only therapies discussed here are complementary.

Defined by NCCAM as “a group of diverse medical and health care systems, practices, and products that are not generally considered part of conventional medicine,” CAM therapies are used by 38 percent of American adults overall, with up to 88 percent of people with cancer using at least one.

Cancer centers that identify themselves as “integrative” combine and coordinate treatments from conventional medicine and CAM for which there is scientific proof of its effectiveness. Complementary therapies are used by both those in treatment and those who have ended treatment.

NCCAM divides CAM therapies into the following categories:

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 Mind-body medicine uses techniques designed to enhance the mind’s capacity to affect bodily function and symptoms. Included in mind-body medicine are prayer, mental healing, and creative outlets such as art, music, and dance.

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 Biologically based practices in CAM use dietary supplements or herbal/natural therapies that are as of yet scientifically unproven.

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 Manipulative and body-based practices in CAM include chiropractic medicine, massage, and naturopathy (a philosophy that favors a holistic approach with natural remedies).

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 Energy therapies involve the use of biofield therapies, including techniques such as chi gong, Reiki, and therapeutic touch, which affect energy fields that purportedly surround and penetrate the human body, and bioelectromagnetic-based therapies, which involve the unconventional use of electromagnetic fields, such as pulsed, magnetic, or alternating-current or direct-current fields.

Before beginning any CAM therapy, it’s important to know if the particular practice has any licensing criteria, what it is, and how to find a good practitioner. Go to the NCCAM website at nccam.nih.gov for help.

Studies show that such exercise programs can reduce anxiety and depression, improve mood and ability to concentrate, boost self-esteem, and reduce symptoms of fatigue.

Several clinical trials have assessed the effect of exercise interventions on quality of life and other psychosocial outcomes in cancer survivors. The exercise programs in these trials were primarily three days of moderate to vigorous activity per week that was progressively increased in duration to approximately 45-minute sessions during a period of three or four months.

These studies show that such exercise programs can reduce anxiety and depression, improve mood and ability to concentrate, boost self-esteem, and reduce symptoms of fatigue.

Although some survivors can adopt an exercise program on their own, local gyms, YMCAs, or other workout facilities can help provide professional support as well as community. A physical therapist is the appropriate resource if you have injuries, pain, or specific post-surgical issues, such as lymphedema or amputation. Exercise physiologists receive college training and are certified by various professional organizations to develop individualized exercise programs. Personal trainers are also popular choices if you want to increase your fitness and activity levels.

The American College for Sports Medicine and the American Cancer Society created a cancer exercise trainer program to certify trainers to work with the special needs of cancer patients and survivors. You can search for a trainer close to you at www.acsm.org. Also, the YMCA and Lance Armstrong Foundation have initiated a program at select YMCAs to educate trainers to work with cancer patients and survivors. Check with your local YMCA to see if they have launched a “LIVE­STRONG at the YMCA” program in your area.

Recommendations on the type, frequency, duration, and intensity of exercise should be individualized to your age, preference, previous fitness activities, type of cancer, type of therapy, and other illnesses you may have. Certified trainers and your health care provider can help you determine your individual exercise plan.

Like dropping a stone into a pond, a cancer diagnosis sends a ripple effect throughout a family. Partners, family, and friends, like the patients, can be physically and emotionally affected by the diagnosis and experience. Don’t assume that the need for communication ends once the intensity of treatment is over.

Keeping the lines of communication open is important in overcoming the challenges in any relationship, and the need for good communication becomes stronger with the additional challenges that appear when confronting cancer.

For couples, Laurel Northouse, RN, PhD, nursing professor and co-director of the socio-behavior program at the University of Michigan Comprehensive Cancer Center, emphasizes communicating openly and effectively.

She says hiding feelings because you think you are protecting someone, which is called “protective buffering,” leads to a situation in which “they’re not being honest about how they’re doing, and so everybody steps on eggshells to protect the other.” By hiding feelings and not communicating openly, Northouse says, they limit the opportunity to get real support from one another.

In addition to sharing thoughts and feelings, good communication also involves active listening, which doesn’t mean always saying, “everything will be OK.” It may help to set aside time each day or week to sit down and talk with each other free of distractions and interruptions, which also means not interrupting the other person to reassure them if they begin talking about something uncomfortable.

Don't assume that the need for communication ends once the intensity of treatment is over.

One survivor said it took a few sessions with a counselor to get her husband to agree to “just listen” and not try to “fix” as she talked about her fear of recurrence, explaining that it was expressing her fear that allowed her to control it.

While Northouse encourages couples to be open about their feelings, she cautions against dumping on the other person. “That’s not being open in the effective sense,” she says. “That’s not helpful because that could be overwhelming for the other partner to hear.”

One caregiver explains that having a therapist or counselor in the room helps because they can ask questions and help guide the communication. “You just mention things you might not have otherwise because they ask you a question you hadn’t thought to pose quite that way.”

Tips for Effective Communicating

Here are some tips from Cancer.Net and the ACS on effective communication:

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 Start slowly. Discussing truly important issues is difficult, so don’t rush.

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 Don’t guess or assume what your partner is feeling or what something means. If you aren’t clear about something, ask for clarification.

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 Be honest. Understand that being honest does not mean being blunt, tactless, or unkind. It means discussing things openly and sharing feelings and emotions.

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 Seek help from a trusted person outside the family to guide difficult conversations. If communication doesn’t improve, consider getting help from a couples’ therapist, counselor, or social worker.

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 Practice active listening. Concentrate on understanding what your partner is saying, rather than thinking about what to say next.

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 Take turns talking and don’t interrupt each other.

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 Focus on one topic at a time and avoid criticism and blaming.

A return to an active lifestyle when treatment ends is determined by general health and ability, but experts say that the benefits of exercise should encourage survivors to resume an exercise program as soon as possible—and for those who have never exercised, to begin. In the past decade, numerous studies have pointed to physical activity as the way to improve mental and physical functioning after cancer treatment. Other studies suggest physical activity may be important for reducing the risk of recurrence and extending survival for some cancer survivors.