Managing your fear of recurrence

There are many different ways to cope with fears after treatment is over. Try different strategies to find the ones that work best for you:

• Give yourself a break. Let yourself experience fears, but try to limit your “worry time” to 15 minutes a day. Reflect on and address your worries by writing in a journal or talking with a friend about your concerns.
• Try not to feel guilty about your emotions. Just recognizing that you are getting stuck in a cycle of fear and ongoing worry is the first step to getting through this difficult time. Accept your fears and recognize that with time, many of these feelings start to go away.
• Give yourself time to breathe. Taking time to relax may be very important to healing. A mental health provider can help you learn to slow down, breathe, focus on yourself, and turn your negative thoughts into positive ones.
• Focus on things you enjoy. Even though you should take time to process your emotions, staying busy at other times may take your mind off cancer. Taking part in activities you enjoy helps you to focus on the present and improve your mood.
• Avoid stress. Stay away from people who make you feel sad, worried, or negative. Don’t take on things you don’t have to take on, and try to accept help when you need it. Allow yourself to say no. Turning down activities that you don’t like or that you don’t need to do will give you more time to spend with your family, friends, or favorite hobbies.
• Get the facts. A member of your healthcare team can help you review your personal risk for recurrence. Your risk may not be as high as you believe it to be. If you know your real risks and take control of the parts within your power, like follow-up care and general health maintenance, your fears will become more manageable.
• Journal. Direct your emotions onto paper or a computer. Studies show that many people gain emotional and sometimes physical benefits from writing about their deepest feelings. Writing is helpful to many people because it’s not expensive, it doesn’t require special training, and you can do it at any time.
• Employ your creativity. Channel your emotions into a creative outlet like crafts or movement. Creative arts can help you focus your energy through your hands or your body. Again, you don’t have to be trained—just finding another way to express your emotions can help with coping.
• Use physical activity. Moving your body will help improve your mood. The government recommends at least 150 minutes of physical activity each week. Walking 30 to 50 minutes several days a week can decrease anxiety and improve sleep, mood and energy. Researchers are studying the relationship between physical activity and recurrence risk, but some believe regular moderate exercise may reduce the risk of cancer returning. Exercise also can help reduce your risk for other medical conditions.
• Make lifestyle changes. Exercising, getting enough sleep, eating a well-balanced diet, and working to maintain your physical and mental health can help you cope. When you do everything you can to protect your overall health, you may feel that you are protecting yourself from a recurrence.
• Explore your spirituality. Being spiritual or learning about spirituality is a coping tool for many people who have gone through cancer treatment. Some people find that being outdoors helps them connect with nature and appreciate the vastness of the universe. If you’re a religious or spiritual person, you may find comfort in prayer or meditation, attending services, or talking with others who share your beliefs.
• Find meaningful ways to help others. Getting involved in the community, volunteering your time, or engaging with organizations like Living Beyond Breast Cancer can be a great way to stay busy. Doing so may help you to develop a new sense of meaning in life. Make sure you find volunteer work that feels meaningful to you. It shouldn’t feel like a chore or a drain on your time.

If volunteering at a breast cancer group doesn’t bring you joy, don’t feel guilty. It’s OK to remove yourself from the world of cancer to heal and recover. Find other organizations or causes that make you feel positive.

Life after treatment

Moving forward may be hard, but remembering you did everything you could to treat the cancer can help you gather strength. Talking with others who are finishing their treatment and who share your diagnosis may also help you cope during this period of transition.

Transitioning into life after treatment

As you approach the end of treatment, you may worry that the cancer will come back, or recur. Up until this point, you made treatment decisions, managed new symptoms and side effects and worked hard to balance treatments with the rest of your life. Now you have more time to slow down and process your experience. You may ask, “How will my life change? Will I be able to stop thinking constantly about cancer? What do I do next?”

You may feel emotionally overwhelmed and exhausted from your diagnosis and treatments. You probably look different than you did before cancer, and you may eagerly await the return of your hair. You have been through a traumatic experience, and the thoughts of going through it again are hard to bear.

The weeks at the end of treatment are very challenging because your life is changing quickly. You may feel relief that treatment is almost over. But you may also worry about moving forward and losing the close monitoring that you had during active treatment.

The first months after treatment

Once you are done with active treatment you’ll likely face some new issues and some that you’ve dealt with before:

• You may feel that you are no longer being proactive, or that you’ve “lost control” of your health. This can be especially true if you don’t take a long-term hormonal or targeted therapy.
• Since you see your doctors less often than you did before, you may lack support or a point person to answer your questions.
• For at least several months after your treatment, you’ll likely deal with fatigue and other lingering treatment side effects. These ongoing side effects do not mean that your treatment failed.
• You now must deal with a changing social environment. Your family and friends are coping with their own concerns. Some may still want to take care of you, and you may or may not feel you need that attention. If loved ones took over roles for you during treatment, you may feel uncomfortable asking to take those roles back.

Finding your “new normal”

Some people will expect you to bounce back to “normal” quickly, but you may need to adjust slowly. Experts sometimes call this changed life a “new normal.” Cancer can affect the way you view your body, your life or the world in general. It also may have changed how you interact with the world physically, mentally, or spiritually.

Depending on the attitudes of friends and relatives, you may feel like discussing your concerns isn’t OK. But you should always have the chance to share your feelings with a close family member or friend, a mental health provider, or another person affected by breast cancer. Learn more about getting personal and professional help.

Treatment follow-up

During the first few years after treatment ends, you will have regular follow-up visits. Every 3 to 6 months you will visit your doctor, and follow-up tests may be routine for the first couple of years. During this time, anxiety around testing and cancer returning can be strong.

Take charge of your care by bringing concerns and questions to your doctor at your scheduled exams. Learn about creating a survivorship care plan with your doctor. Knowledge can help you feel more in control. If your doctor doesn’t take time to listen to or answer your questions to your satisfaction, consider switching doctors.

Three or more years after treatment ends

As you move further away from treatment, you may develop mixed feelings about the future. You might want to forget about what you have been through, but sometimes ignoring your feelings can make them resurface more strongly later. Your fears may return when you encounter milestones or other triggers. If someone you know has a recurrence and you don’t, you could feel guilty that you are doing well. You may also feel scared at the same time that you, like your friend, will have a recurrence.

If new symptoms make you fear the cancer is back, know that most of the time what you feel are “normal” aches and pains. Some or all may even be related to the aging process. But remember the “2-week rule,” and don’t hesitate to contact your doctor if the symptoms persist for longer than 2 weeks.

Going to the doctor doesn’t mean you have cancer. You will feel empowered when you take charge of your care. Make sure that your doctors pay attention to what you’re feeling.