Cancer Survivorship

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Cancer survivorship begins at diagnosis, the moment the battle with cancer begins, and continues through cancer treatment and beyond. A cancer survivor is anyone battling cancer: the person with cancer, a spouse or partner, a child, a friend, a parent or a caregiver.

The above definition is that of the LiveStrong Organization at (www.livestrong.org). The following information is drawn from this source as well as the following: MD Anderson Cancer Center (www.mdanderson.org), NCCC (www.nccc.org), Medicine Net (www.medicinenet.com) and Mayo Clinic (www.mayoclinic.com).

The Three Stages of Cancer Survivorship

Living with cancer refers to the experience of receiving a cancer diagnosis and any treatment that may follow. During this time, patients will undergo treatment and may be asked to join a clinical trial to study new cancer therapies. Patients and their caregivers may be offered services to help cope with emotional, psychological and financial concerns.

Living through cancer is the period following treatment in which the risk of cancer recurring is relatively high. Many patients are relieved that treatment is over, but anxious about no longer seeing their cancer doctor on a regular basis. During this stage, patients typically see their cancer doctor two to four times a year depending on their circumstances.

Living beyond cancer refers to post-treatment and long-term survivorship. While two out of three survivors say their lives return to normal, one-third report continuing physical, psychosocial or financial consequences. During this stage, most survivors go back to the care of their primary physician. Ideally, they will have developed a long-term health care plan with their cancer doctor to be implemented by their regular doctor.

In addition to the physical effects of cancer, survivors can experience significant and varied psychological, emotional and spiritual impacts. Many of these affect quality of life and can show up many years after treatment.

Some of the most common issues that I have helped cancer survivors deal with include:

• Anxiety
• Depression
• Cognitive changes (“chemo-brain”)
• Body image/self esteem
• Spirituality
• Relationships
• Life in the workplace

I have extensive experience with the issues cancer survivors grapple with, and would like to talk with you about your situation. Please call me at 603-448-3588. You may also e-mail me at Karen@Psychologist-NH.com.

Anxiety

Anxiety is a normal reaction to cancer. A person may experience anxiety while undergoing a cancer screening test, waiting for test results, receiving a diagnosis of cancer, undergoing cancer treatment, anticipating a recurrence of cancer, or attempting to resume ‘normal’ life activities after active cancer treatment has ended. Anxiety associated with cancer may increase feelings of pain, interfere with ability to sleep, cause nausea and vomiting, and interfere with the patient’s (and family’s) quality of life. If left untreated, severe anxiety may even shorten a patient’s life.

Cancer survivors will find that their feelings of anxiety increase or decrease at different times. A patient may become more anxious as cancer spreads or treatment becomes more intense. The level of anxiety experienced by one person with cancer may differ from the anxiety experienced by another person. Most patients are able to reduce their anxiety by learning more about their cancer and the treatment they can expect to receive. For some patients, particularly those who have experienced episodes of intense anxiety before their cancer diagnosis, feelings of anxiety may become overwhelming and interfere with cancer treatment. Most patients who have not had an anxiety condition before their cancer diagnosis will not develop an anxiety disorder associated with cancer.

Intense anxiety associated with cancer treatment is more likely to occur in patients with a history of anxiety disorders and patients who are experiencing anxiety at the time of diagnosis. Anxiety may also be experienced by patients who are in severe pain, are disabled, have few friends or family members to care for them, have cancer that is not responding to treatment, or have a history of severe physical or emotional trauma. Central nervous system metastases and tumors in the lungs may create physical problems that cause anxiety. Many cancer medications and treatments can aggravate feelings of anxiety.

Contrary to what one might expect, patients with advanced cancer experience anxiety due not to fear of death, but more often from fear of uncontrolled pain, being left alone, or dependency on others. Many of these factors can be alleviated with treatment.

It may be difficult to distinguish between normal fears associated with cancer and severe fears that can be classified as an anxiety disorder. Treatment depends on how the anxiety is affecting daily life for the patient. Anxiety that is caused by pain or another medical condition, a specific type of tumor, or as a side-effect of medication, is usually controlled by treating the underlying cause.

After cancer therapy has been completed, a cancer survivor may be faced with new anxieties. Survivors may experience anxiety when they return to work and are asked about their cancer experience, or when confronted with insurance-related problems. Many survivors live in fear that their cancer will come back at some point. For some, a milestone event like the anniversary of their diagnosis or the end of care by their cancer doctor can trigger these feelings. Survivors may also experience anxiety due to changes in body image, sexual dysfunction, reproductive issues, or posttraumatic stress. Fear can be a good thing if it motivates you to discuss health changes with your doctor, or it can cause unnecessary worry. Knowing your own body can help distinguish between normal changes and more serious symptoms.

Depression

An estimated 70% of cancer survivors experience depression at some time. Depression can be hard to diagnose in cancer survivors because the symptoms are so similar to the side effects of cancer treatment, including weight loss, fatigue, insomnia and inability to concentrate. Furthermore, there is often confusion about the difference between sadness, “mild depressed mood” (sometimes called mild depression), and the medical condition known as “clinical depression.” Medical professionals and the general public may use these words without being clear about what they really mean. This leads to misunderstandings about what a person is really feeling and what type of help is needed.

Sadness is a feeling of unhappiness, unrest or mental suffering. A loss of some kind or an unexpected change can cause sadness; however, people experience this feeling for many different reasons. Sadness is a normal human response to upsetting situations and plays an important role in helping the cancer survivor understand how much they really care about something. Feeling sad is a normal reaction when areas of one’s life changes, when situations feel uncertain or when grieving the loss of something or someone that is cared about. Sadness can be very strong at times but usually doesn’t last very long. Many people facing many different kinds of stressful situations feel sadness. The cancer survivor and his/her family members and friends may experience sadness as he/she lives with the ups and downs of cancer survivorship – this is normal. Understanding your own personality and how you normally respond to stressful situations can help. Some personality types tend to become sad more easily than others. Being aware of this can help you find the best way to manage sadness.

You may experience another type of feeling that doctors call mild depressed mood. Mild depressed mood is often described as feeling down or emotionally low. This feeling is like sadness, but a sense of gloominess or emptiness is also involved. You also may experience a lack of energy. Just as with sadness, mild depressed mood usually does not last very long. However, mild depressed mood may occur without a specific loss in your life and sometimes can be caused by certain medications or treatments. Explaining your feelings to others may be difficult because you may not understand them yourself.

The professionals who treat cancer understand that feelings of sadness or a mild depressed mood are common reactions to some of the stresses and changes associated with cancer. Talk to your health care team about how you are feeling. You may find ways to deal with your feelings on your own or with the help of family and friends. Feelings of sadness or mild depressed mood in any given situation may come and go, or disappear altogether, but these feelings should not keep you from normal activities or from enjoying life.

If ignored, your feelings of sadness or mild depressed mood can cause a great amount of stress for your mind and body. You might not realize that this stress is building up until you are overwhelmed by it. Finding ways to work through the sadness or mild depressed mood may become difficult, and you might start making unhealthy decisions. If your feelings are becoming overwhelming and are keeping you from enjoying life, you may be experiencing a medical condition called “clinical depression.” This is a more serious condition that requires the help of health care professionals.

Just as with sadness, clinical depression might be caused by stressful experiences and emotional situations. Chemical imbalances in the brain may also be a cause. If you are clinically depressed, you might be feeling very sad. However, the sadness that comes with clinical depression lasts for a longer amount of time and may be very strong. The activities that used to bring you enjoyment may no longer interest you, and you may feel very tired most of the time. Clinical depression can make normal, everyday activities very difficult. You may stay away from your friends and family and avoid social gatherings that you once enjoyed. Your sleeping and eating habits may change. You may have very little hope that your situation will get better. Thoughts of hurting yourself and possibly ending your life may be present because of feelings of hopelessness. Clinical depression can hurt your ability to make good decisions and see options for getting help. There are many effective treatments for clinical depression. Speak with your mental health professional, oncology doctor or nurse, or other health care provider if you think you may be experiencing clinical depression so that you get the help that you need.

Telling the difference between sadness, mild depressed mood and clinical depression is not always easy. The symptoms can be similar. However, the symptoms that come with clinical depression last longer and are usually much stronger and more overwhelming than those of sadness or mild depressed  mood. Pay attention to your feelings when you begin to feel sad about something. Talk to your health care team about any concerns that you have about your feelings. They can help you understand if what you are experiencing is sadness, mild depressed mood or clinical depression. When you know what your symptoms mean, you are more likely to find the best way to deal with your feelings before they become overwhelming.

Cognitive Changes

For years people undergoing cancer treatment have described their minds as being in a fog – unable to concentrate and remember details about their everyday lives. Doctors and researchers knew something was wrong, but they couldn’t pinpoint what it was. Research now shows that what these people are experiencing is called mild cognitive impairment – the loss of the ability to remember certain things, learn new skills and complete certain tasks. The cause of mild cognitive impairment, “chemobrain,” during and after cancer treatment still isn’t clear, nor is it clear how often it happens or what may trigger it.

The term “chemobrain” refers to cognitive changes during and after cancer diagnosis and treatment. Though the term implies a relation to chemotherapy, it isn’t clear that chemotherapy is responsible. Women with breast cancer who underwent chemotherapy were the first group to bring these symptoms to light, as more started mentioning their symptoms to their doctors.

It isn’t clear whether chemotherapy, or other factors such as stress and hormonal fluctuations, cause the changes in memory and thinking. What is clear is that some people with cancer do notice increased difficulties with certain mental tasks during and after cancer treatment.

In general, researchers have found that chemotherapy can affect your cognitive abilities in the following ways:

• Word Finding: You might find yourself reaching for the right word in conversation.
• Memory: You might experience short-term memory lapses, such as not remembering where you put your keys or what you were supposed to buy at the store.
• Multitasking: Many jobs require you to manage multiple tasks during the day. Multitasking is important at work as well as at home — for example, talking with your kids and making dinner at the same time. Chemotherapy may affect how well you’re able to perform multiple tasks at once.
• Learning: It might take longer to learn new things. For example, you might find you need to read paragraphs over a few times before you get the meaning.
• Processing Speed: It might take you longer to do tasks that were once quick and easy for you.

About 20-30% of people undergoing chemotherapy will experience cognitive impairment, though some studies report that at least half the participants had memory problems. One study found 35% of women with breast cancer had memory problems before beginning chemotherapy, so it’s not clear how or if memory changes are related to cancer treatment. Signs and symptoms of these memory changes can last for a year or two or more after treatment.

Changes in memory during and after treatment may be very subtle. Cancer survivors might notice changes during everyday tasks and as they start working again after treatment. The memory changes are often so subtle, in fact, that researchers find that people who report having memory difficulties tend to score in the normal ranges on tests of their cognitive ability. That makes it more difficult to understand, diagnose and treat the memory changes.

Doctors don’t know what causes the cognitive changes associated with chemotherapy. It was previously thought that chemotherapy drugs didn’t enter your brain, but were kept out by the blood-brain barrier, which separates chemicals that should be in your brain from those that shouldn’t. But some researchers now suspect some chemotherapy drugs may be able to slip past the blood-brain barrier. This could potentially affect your brain and your memory.

It isn’t clear which chemotherapy drugs are more likely to cause memory changes or if higher doses pose a bigger risk than do smaller ones. And it isn’t possible to predict who’s more likely to have cognitive impairment after chemotherapy.

A number of factors can cause temporary memory problems in people undergoing chemotherapy — making it difficult to identify the so-called chemobrain from the normal stresses of treatment. Temporary memory problems can, for the most part, be treated. Causes include:

• Low Blood Counts: If your blood counts are low, you might feel tired, making it difficult to concentrate.
• Stress: Being diagnosed with cancer and starting treatment is stressful. Stress also makes concentrating difficult.
• Medication to Treat Side Effects: Certain medications for treating side effects including nausea and vomiting may cause drowsiness. When you’re tired, it may take longer to complete tasks.
• Lingering Depression: Depression is common in people with cancer. If your depression continues after your treatment, you might find it difficult to pay attention.
• Lingering Fatigue: Fatigue is a side effect of several types of cancer treatment, including chemotherapy. Your fatigue might end when your cancer treatment ends, though it also can continue after treatment.
• Hormonal Changes: Many cancer treatments may alter the normal hormonal balance in your body, causing cognitive changes. Hormonal changes are a side effect of some treatments and, with other treatments, are the intended way to treat your cancer.
• Pain Medications: Some pain medications cause drowsiness and difficulty concentrating. For most people, these side effects diminish or disappear once a proper dose of pain medication is established.

Although the cause of mild cognitive impairment during and after cancer treatment still isn’t clear, that doesn’t mean there isn’t any hope. Treatment for chemo-brain is currently being researched, and initial good results are being recorded. As a member of one of these research teams, I have experience with one of the cognitive-behavioral treatment programs being researched.” I also have extensive experience delivering this program, and a revised version of the program which I helped create, to many patients at Dartmouth’s Norris Cotton Cancer  Center and in my private practice.

Body Image & Self-Esteem

Cancer survivors who have experienced amputations, disfigurement and loss of organs like the colon, bladder, or breast often grapple with how they relate to themselves and other people. A negative body image and low self-esteem can affect a survivor’s ability for intimacy with a partner, which has a major impact on quality of life.

Spirituality

Cancer can severely test one’s spiritual or religious beliefs. Many survivors find that life takes on new meaning after cancer, and will renew their commitment to spiritual practices or organized religion. On the other hand, some see cancer as proof that God has abandoned them. An increasing number of survivors are embracing a holistic, mind/body/spirit approach to living with and beyond their disease. Research suggests that spirituality even improves quality of life through a strong social support network, adaptive coping, lessened depression and better physiological function.

Relationships

How other people react to their illness is perhaps the biggest challenge faced by cancer survivors. Friends, coworkers and family members may feel awkward about discussing any aspect of the cancer diagnosis/treatment/survivorship. They may remain silent, avoid, or pretend nothing has happened. Others may use humor in an effort to take your mind off the situation, instead of being someone with whom you can discuss your issues. Because cancer can be a long-term illness, overcoming communication barriers early is crucial.

Life & the Workplace

Re-entering social and professional life can be accompanied by many fears: worry about being out in the world with an increased risk of infection; not having enough energy to get through a workday; and anxiety about not being able to think clearly because of “chemobrain” or memory loss. After struggling with life-and-death questions, many cancer survivors feel apart from peers who haven’t had the same experience, and may turn to other survivors for support and friendship. You may be reluctant to reveal that you are undergoing cancer treatment to your employer or coworkers for fear of being treated differently or even losing your job and health insurance. This creates an atmosphere of uncertainty that contributes to emotional stress.