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August 2010 Ask the Expert: Fear of Recurrence

During initial breast cancer treatment and therapy, it’s common to live "in the moment" because you are so busy actively fighting the disease. But what happens when treatment ends?

Fear of recurrence is one of the biggest challenges some women face in moving on with life. These fears are normal, but they can interfere with your ability to care for yourself. By getting your questions answered about your fears, you can learn how to manage and integrate your breast cancer history into your life.

During the month of August 2010, Living Beyond Breast Cancer expert Sage Bolte, PhD, LCSW, OSW-C answered your questions about coping with feelings and managing fears.

Can you please review what a counselor can do for a person, and where I should go to find one?

Is fear of recurrence ever addressed in support groups? If so, how can a support group help me manage my fears?

Does fear of recurrence ever go away? I am a five-year survivor and still struggle with this fear.

How do I know when a pain or problem is something to get checked out or not really a big deal? I feel like I am running to the doctor for every ache and pain.

Is it common for breast cancer survivors to experience a wide range of emotions (i.e. feeling happy for a few days followed by a day or two of feeling tearful and anxious), and do these emotions become more stable over time and with experience as a survivor?

Can you give me some practical things I can do to help lower my anxiety?

Question: Can you please review what a counselor can do for a person, and where I should go to find one?

Dr. Bolte: A mental health professional can be helpful to an individual, couple or family in a variety of ways. This professional can help assess and identify coping skills to help you better manage thoughts, feelings or areas of your life that are creating or reacting to stress and decreasing your quality of life. For example, if you are experiencing increased anxiety around your diagnosis, or if fear of recurrence is interfering with your quality of life, a counselor could help you identify triggers that may be increasing these fears. The counselor can then work with you to better manage these fears and improve your overall quality of life.

There are different kinds of mental health professionals. The most common are: licensed clinical social workers, psychiatrists, licensed clinical psychologists, licensed professional counselors and certified sex therapists (who help address sexual health issues after cancer). It is essential that you verify the professional is licensed by your state licensing board to practice individual therapy. You can identify an oncology-certified social worker by going to the Association of Oncology Social Work directory. You can find other mental health professionals through your insurance provider list, word of mouth or a list of professionals recommended by your oncology team. It is important to remember that you can interview a variety of therapists to find the right fit. Whether this is a short- or long-term relationship, it is important that you feel comfortable with the professional’s model of practice.

Questions to ask your mental health professional include:

1. Do you take insurance?

2. Do you bill the insurance company or provide me with reimbursement papers?

3. What is your hourly fee?

4. What is your practice model?

5. Are you comfortable working with individuals who have or have had cancer or other illnesses?

6. Are you familiar with how cancer and its treatments may impact my quality of life?

7. Do you work with individuals, families and couples of all ages?

Question: Is fear of recurrence ever addressed in support groups? If so, how can a support group help me manage my fears?

Dr. Bolte: This is a more difficult question to answer since I don’t have much experience outside of the support groups I run. However, I think I can speak for myself and many other colleagues I know who run support groups for women affected by breast cancer and say "yes," fear of recurrence is addressed in support groups. It is my experience that this topic is hard to avoid, as many women may have an upcoming follow-up visit with their oncologist, a symptom that requires follow-up testing or a friend who was recently diagnosed with a recurrence or metastatic disease. All of these (and many more) situations can trigger fear of recurrence in women who have had breast cancer.

A support group should be a safe place where you can connect with other women who "get it", discuss any and all of your fears, joys, sadness and questions around your breast cancer and leave feeling encouraged. If you find a group that doesn’t allow you to talk about this, it might not be the right group for you.

I also firmly believe that finding a professionally-facilitated (or online-monitored) support group is essential so that when a tough topic like fear of recurrence comes up, the information and support provided is appropriate. If the group is led by a peer or untrained professional, some information that is shared may be inaccurate, or your fear may not be appropriately managed.

Professionally-led support groups have been shown to help improve quality of life in women affected by breast cancer. They can help you manage your fears by helping you "normalize" some of your thoughts and fears and reassure you that you are not alone. The group facilitator might be able to provide you with tips and tools on how to manage this fear and when your concerns may need to be addressed with your healthcare team. You can also learn from others sharing what has and hasn’t worked for them.

Question: Does fear of recurrence ever go away? I am a five-year survivor and still struggle with this fear.

Dr. Bolte: I wish I had a clear-cut answer for you. Fear of recurrence is a normal experience after a life-changing event like cancer. For some women, this fear comes but quickly goes; it may never revisit their mind again. For others, it may be brought on by an annual appointment, a diagnosis anniversary or a friend’s breast cancer diagnosis.

The voice of fear that seems so loud after the first year or two should become much quieter over time. If you find that this fear is keeping you from making long-term decisions or impacting your quality of life, then I would recommend getting in touch with a mental health professional who can help you work through it. The fear may not totally go away, but the intensity or impact should lessen. Support groups can also be a safe place to discuss and explore fear of recurrence. Sometimes talking about the fear can help decrease it.

Additionally, some women find that educating themselves about all aspects of their disease, their personal risk of recurrence, preventative measures, etc. can help decrease their fear. For others, however, this may have the opposite effect. It is important to know how you want to get information and how much information you want to get when it comes to understanding your risk of recurrence so your anxiety doesn’t increase. It can be very helpful to discuss fear of recurrence with your oncology team so they can provide you with the information and support that may help you. The bottom line is if fear of recurrence is keeping you from embracing life fully, then it’s time to take control. Seeing a professional can certainly help you do that.

Question: How do I know when a pain or problem is something to get checked out or not really a big deal? I feel like I am running to the doctor for every ache and pain.

Dr. Bolte: This is a common question and concern that should be discussed with your medical oncologist (or oncology team) as it relates to your unique needs and diagnosis. As a rule of thumb, most of the RNs and MDs I work with recommend the "two week rule." If you have a symptom that is persistent and consistent, meaning the intensity of the symptom does not get better or gets worse, then it would be wise to call your oncology team or primary care provider and report the symptoms. They will then decide what tests (if any) should be done for follow up.

Clearly, if the symptoms are debilitating or interfering with your quality of life, you should report this right away and let your team decide how to proceed. There is no harm in calling your team, if you are unsure, and reporting your symptoms so they can determine whether a course of action is needed.

It’s also important to remember that your body may have other "normal" pains and aches (i.e. headaches, backaches, etc.) that don't necessarily indicate metastasis.

Question: Is it common for breast cancer survivors to experience a wide range of emotions (i.e. feeling happy for a few days followed by a day or two of feeling tearful and anxious), and do these emotions become more stable over time and with experience as a survivor?

Dr. Bolte: Absolutely. There is no "right" or "wrong" way to experience being a survivor. Everyone’s experience is unique, including your emotional healing and how you "make sense" of your diagnosis.

If possible, enjoy the ups so that when you have the downs, you are able to reflect on the days when you felt good and remember that the anxious moments have passed before. Typically, these ups and downs do seem to "stabilize" over time (especially after the first year after treatment ends) as life begins to take on its "new normal" and you adjust to new limitations and/or abilities. However, don’t be surprised if you notice the ups and downs return for a bit on a "cancerversary" or during a doctor’s appointment or some other emotionally stirring occasion.

If at any time you or your friends, family or loved ones become concerned that your wide range of emotions are becoming too extreme, interfering with your quality of life and relationships or interfering with your overall functioning, it would be important to consult with a professional. You could initially discuss your concerns with your medical oncologist or primary physician, or you can contact an oncology counselor for assessment. Some women find support groups to be a good "sounding board" for the ups and downs as well.

Question: Can you give me some practical things I can do to help lower my anxiety?

Dr. Bolte: There are several things you can do to help manage anxiety and depression. However, not all of these things work for everyone, and it is important to figure out what is the best fit for you. I certainly can’t name all the positive approaches to managing anxiety, but here is a list of some things we know through research that can help manage anxiety:

  • Exercise. This includes yoga; cardiovascular activities like running, swimming, brisk walking, biking, and hiking; and any other exercise activity that gets your heart rate up for 30 to 45 minutes. If you can’t exercise briskly for 30 to 45 minutes, modify your exercise to your current physical limitations – just moving can help.
  • Get up and go. If you feel "stuck," remove yourself from that environment for a period of time (20 minutes or more) and change your scenery. Sometimes just removing yourself from the space that seems to be increasing your anxiety and going somewhere where you can feel safe and decrease your anxiety allows you to feel more in control when you need to go back to that environment.
  • Spirituality. Prayer, meditation and other rituals that encourage you to gain strength from outside and inside yourself have been shown to have a positive effect on anxiety. The great thing about spiritual practices or routines is that many of them can be done in various environments. If you are in public, you can find a quiet corner, bench or restroom and take 15 minutes to close your eyes and engage your spiritual self to help decrease anxiety.
  • Deep breathing, Reiki and massage. Just 15 – 20 minutes a day of deep breathing (getting the breath down to your diaphragm) can have a tremendous effect on your anxiety and overall feeling of calm and wellness. Reiki and massage are other complementary therapies that can help with decreasing anxiety.
  • Cognitive and Behavioral Therapy (CBT). CBT is a theoretical approach to therapy based on the idea that negative thoughts lead to negative feelings or behaviors (such as anxiety). Therefore, by changing one’s negative thoughts, one can better manage the anxiety. There are many licensed clinicians who specialize in CBT, so if you are considering therapy, interview the therapists and ask what approach they take to helping people manage anxiety.
  • Anti-anxiety medicines. Sometimes anxiety is managed best with medicine, in addition to the things listed above. If you are concerned your anxiety is not being managed well and you have tried other healthy ways of managing your anxiety, it is important to talk to your healthcare team. People diagnosed with cancer are 15 to 25 percent more likely to experience depression and anxiety, and it is not uncommon for someone to go on an anti-anxiety medicine for a short or long period of time while trying to learn other coping skills.
  • Support groups. For some, support groups can help manage anxiety, but for others it can provoke anxiety. It is important for you to know what is helpful or not helpful to you. Ask the facilitator what the goals of the group are and if the group is moderated by a professional. You should also describe your concerns about your anxiety with the facilitator to see if he or she feels the group may be a good fit for you.
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