Survivorship

Managing the Emotional Effects of Survivorship

Although many survivors may feel a sense of relief or happiness about finishing cancer treatments, you may struggle with how to begin a new chapter in your life without cancer. Survivors often expect life to return to the way it was before they were diagnosed, but many people find, instead, that they are beginning a different life, one that many people refer to as their “new normal.”

Mental and emotional health is an important part of the transition into survivorship. Recovering from serious illness isn’t just about your body; your mind must also heal. It is impossible to predict how survivorship will affect your emotional health because it is different for everyone. But what’s often the same is the shock that occurs when feelings of stress, depression, anxiety, guilt and/or fear – rather than feelings of jubilance and relief – manifest. Studies show that approximately 10 percent of survivors experience some form of poor mental health. Many individuals are too quick to accept feelings of being a little “off” as a new normal. Recognizing the challenges you may face and knowing when to ask for help are important to your emotional healing.

Following are some common emotional effects that may occur after treatment ends. All of these emotions are valid, understandable and even expected in cancer survivors, but they can become serious if they’re ignored. Therefore, an important part of survivorship involves acknowledging your emotions — both the good and the bad. From there, you can learn to accept them and seek treatment as necessary.

If your emotions hinder your daily life, it’s important to seek counseling or therapy. Your doctor or another member of your cancer care team can refer you to a mental health specialist who has experience working with cancer survivors. Your cancer center may have a qualified employee on staff.

Anxiety

Anxiety is a feeling of worry and unease and is often characterized by the following symptoms:

  • Difficulty focusing thoughts
  • Unexplained trembling or shaking
  • Muscle tension
  • Restlessness
  • Irritability or a quick temper
  • Dry mouth

Anxiety about your future can begin as soon as your cancer treatment ends and can continue until it is treated. Moderate to severe anxiety is often treated with medication, therapy or a combination of both. The medications most commonly used are antidepressants, anti-anxiety drugs and beta-blockers to control some of the physical symptoms. You may benefit from joining a self-help or support group, where you can express your feelings and share your experiences with others. Stress management techniques, such as meditation, physical activity and deep breathing exercises, can also help lessen anxiety.

If your symptoms are severe, they can interfere with your day-to-day life and even become debilitating. It’s important to seek help if you believe you may be suffering from anxiety.

Depression

Depression is a disorder consisting primarily of a depressed mood and a loss of interest or pleasure in normal activities. More complex than feeling sad or hopeless, a diagnosis of depression requires that you’ve felt at least five of the following symptoms every day for at least two weeks:

  • Persistent sad, anxious or numb feeling
  • Loss of interest or pleasure in hobbies and activities you once enjoyed
  • Feelings of hopelessness
  • Feelings of guilt, worthlessness or helplessness
  • Fatigue and loss of energy
  • Difficulty concentrating, remembering or making decisions
  • Sleep problems
  • Changes in appetite and/or weight
  • Thoughts of death or suicide or suicide attempts
  • Restlessness and irritability
  • Social withdrawal
  • Repeated episodes of crying

For many cancer survivors, depression is a psychological reaction to the cancer experience as a whole. Certain ongoing treatments or maintenance therapies, such as chemotherapy or hormone therapy, can also cause or contribute to depression. Many cancer survivors who have depression do not talk to their doctors about it because they think depression is “expected,” but depression can, and should, be treated.

Milder forms of depression may be alleviated by counseling (without medications), while moderate or severe depression is typically managed with a combination of psychological treatment and medications (antidepressants). Psychological treatment may include individual psychotherapy, which explores emotional issues that contribute to depression, and/or cognitive-behavioral therapy, which helps change negative thought patterns and behaviors. Cancer support groups can also be helpful, as can a range of complementary therapies, such as meditation, art therapy, massage therapy, music therapy, writing therapy, exercise and stress-relieving strategies (deep-breathing exercises and guided imagery). In addition, support from family and friends can help you better cope with daily life and, perhaps, reduce your risk for depression.

Many types of antidepressants are available. The antidepressants most often used for people with cancer belong to a class known as selective serotonin reuptake inhibitors (SSRIs). Tricyclic antidepressants may be used as well, although they generally have more side effects than SSRIs. Another class of drugs, known as psychostimulants, has shown promise in the treatment of depression when given alone or in combination with a different type of antidepressant drug.

Each antidepressant drug has different side effects, which can usually be managed by adjusting the dose or switching the medication. Your doctor will work with you to find the antidepressant that works best with the fewest number of side effects. Antidepressants do not take effect right away and may take several weeks before becoming effective. Be sure to follow the directions for taking your medication exactly as prescribed by your doctor. Some antidepressants shouldn’t be taken with certain hormone therapy drugs, so ask about potential drug interactions.

Doubt

The sense of doubt that some survivors may feel can lead to confusion and questions about the meaning of life and its purpose. This is common. Some people find strength in support from family, friends, the community or religion. It may help to talk about your feelings with a loved one, close friend, counselor or support group.

Spirituality often refers to how individuals find and express meaning and purpose, and how they connect to everything around them. Your experience with cancer may cause you to look at your faith, religion or spirituality differently. It’s common among survivors and their families to wonder why they got cancer, what it means and how to move forward.

Studies have shown that strong faith and spirituality (regardless of religious practices) are linked to an improved quality of life and being better able to cope with a serious health diagnosis, treatment and survivorship. Developing a sense of meaning and peace of mind through spirituality may help you on your road to enjoying life, experiencing better overall health and living longer after treatment.

Fear

Many survivors live with the fear that their cancer will come back. Making long-term plans becomes difficult, and every ache and pain triggers a concern that the cancer has returned. Developing a comprehensive follow-up care plan can help calm these fears.

Your follow-up visits may involve screening exams and diagnostic tests to monitor for potential cancer recurrence. Even knowing you have an upcoming appointment or scan can trigger fear. This is sometimes referred to as “scanxiety.” It’s normal to feel anxious or overwhelmed just before your next mammogram or CT scan. It may help to take someone with you to your follow-up appointments for support. If you find yourself distracted leading up to your visits, try to avoid making big decisions or tackling important tasks immediately before the appointments.

As more time passes, you will begin to trust your body again, and the fear and anxiety will lessen; however, they may never completely disappear. Do your best to stay focused on the present and to remind yourself that you are a survivor. History does not always repeat itself.

 

Finding Comfort Through Therapeutic Writing

Surviving cancer can bring about a wide range of feelings, many of which can be difficult to express. Writing therapy, also called expressive writing, can help you work through unresolved feelings and reflect on what your cancer experience has meant to you, your family and your friends. According to several studies, writing therapy can even help boost your emotional well-being, reduce your cancer-related symptoms and improve your physical abilities. As a result, cancer centers across the country have started to include expressive writing programs as a complementary therapy option to help people process their diagnoses and cope more effectively.

No matter what you choose to write about, never worry about perfection. Right and wrong do not exist in the realm of therapeutic writing, so simply write what you feel. Therapeutic writing can take many forms.

Tracking

Although your treatment may have ended, you may take maintenance medications to keep cancer from returning. You can track your symptoms, side effects, medication adherence and more through therapeutic writing. Share this information with your health care team, so they can monitor your progress accurately and effectively, and provide additional help when necessary. Try to do it each day. It usually doesn’t require a lot of time.

Reflecting

Reflecting involves looking back on your experiences and analyzing how they made you feel, how they fit together and what you can learn from them. You can focus on philosophical questions, such as “What do I do with my life now?” and “What does it all mean?” Or you can focus on smaller, more direct questions, such as “Should I try to get more exercise?” and “What can I do to reduce my risk and my family’s risk of getting cancer in the future?”

Sharing

Maintaining your personal relationships is vitally important for your emotional health, and writing therapy is another way to keep those lines of communication open. What you share and with whom is up to you. Remaining completely silent about your experience as a cancer survivor can make you feel isolated and may force others to speculate about your condition, so sharing some information is usually recommended. But, you don’t have to be an open book. You may even want to jot down the reactions you received from specific people.

Expressing

You can turn to personal expressive writing to document your emotional developments, manage your worries and doubts, and work through feelings, such as hope, anxiety, sadness, fear, joy and relief. It may also help alleviate some of the unsolvable questions churning in your mind, such as why you had to get cancer. Keeping a private journal will allow you to write more deeply and honestly than you might in your public messages.

 

 

Guilt

It’s not unusual for cancer survivors to feel some level of guilt. Some feel they’re to blame for their disease. Others worry that they placed too much of a burden on their loved ones, and some even wonder why they survived while others with similar conditions weren’t as lucky.

If you feel guilty, talk through your feelings with a counselor or therapist to help identify the source of your guilt and teach you how to work through it. Additionally, you might find that you can lessen your guilt by giving back to the cancer community. Helping others can provide a sense of purpose and well-being that can help take away any blame you may be placing on yourself.

Stress

Stress is the physical, mental and/or emotional tension that results from an adverse or demanding circumstance, such as cancer. Chronic stress can negatively affect your health by weakening your immune system, raising your blood pressure and cholesterol levels, increasing your risk for heart disease and more, so it’s important to manage your stress before it becomes serious.

It’s common for you to feel stress as you transition from patient to survivor. After all, for the past several weeks, months or even years, you’ve focused most of your time and effort on fighting the disease and getting better. Now that you’ve moved beyond treatment, you are faced with transitioning back to the duties and tasks of everyday life, all of which have probably taken a backseat to your health. In addition to readjusting to the day-to-day responsibilities, you may face these stresses:

  • Finding or keeping a job
  • Managing finances and health insurance
  • Treating long-term side effects
  • Rekindling and maintaining your relationships

An important key to managing stress is understanding that you don’t need to do everything all at once. Make a to-do list and then prioritize. Be realistic about what you can accomplish in a given period of time, and be patient with yourself as you establish a new daily routine. Learn to say “no” and take time to simply relax. If, over time, you find you’re unable to adjust to your new routine and your stress levels remain high, it’s important to seek help from a counselor or therapist.

The Rebuilding Process

You will likely look at your priorities and realize many of them have changed. You may want to spend more time doing things you enjoy and spend more (or less) time with certain people in your life. It is important to share these feelings with your loved ones, not only to develop a clearer picture of the things you want in life but also to help those around you understand, accept and support the decisions you make.

 

Caregiver’s Transition to Post-Treatment

As a cancer patient transitions into a cancer survivor, your role as a caregiver also changes. You may not be relied upon as heavily as you were when your loved one was undergoing treatment, but you are still an important part of your loved one’s life. You will need to adjust back to a “normal” life, although it won’t be an overnight transition. It may take time for your loved one to be comfortable with his or her new independence. Remember that you and your loved one are still on the same team. Try to be patient with each other and support one another during this time of transition.

Adjusting to life after being a caregiver to someone in active treatment may be very emotional for you. You may become depressed. Recent studies have shown that caregivers are at an increased risk for developing depression, a disorder consisting primarily of a depressed mood and a loss of interest or pleasure in normal activities. It is more than just feeling sad or blue. Depression can occur at any time throughout the caregiving journey and can be brought on by stress and its effects on your personal life and emotions. If you experience any of the symptoms of depression, it is important to seek help from your doctor or counselor. You may also consider exploring online support groups and other resources.

Once a loved one no longer needs as much assistance, you may experience exhaustion, also known as fatigue or burnout. This type of exhaustion can be physical, emotional and/or mental. Sometimes, when you’re no longer keeping up the incredible pace that has become normal for you as a caregiver, your body finally lets down its guard and all of the symptoms you’ve been holding back come surging forward. This can also happen if you’ve neglected yourself while caring for a loved one. Sometimes the exhaustion leads to a physical illness, such as catching a cold or triggering an existing autoimmune disorder.

Take time to rest and return to hobbies you may have stopped. Re-establish relationships with family members, friends or co-workers that were put on hold while you were caregiving, and develop or increase healthy habits, such as exercising and eating healthy foods.

You may also experience the same fear your loved one has about cancer returning. No one can predict if your loved one will develop cancer again, but you can manage your concerns by researching the type of cancer your loved one had and the possibility that the cancer may return. That likelihood will depend on the type and stage of cancer and how well the treatment worked. Some cancers are more prone to recurring (coming back) than others. To get more information, discuss your concerns with your loved one’s doctor.

Another fear that may develop post-treatment is the anxiety (worry) that accompanies upcoming scans, which is sometimes referred to as “scanxiety.” Anticipating the day of the scan or the results can be just as scary for the caregiver as the survivor. Take deep breaths, try to relax and consider sharing your feelings with a friend.

 

Additional Resources

 

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