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July 2014 Ask the Expert: Coping with Fear of Recurrence

Worry about cancer coming back or getting worse is normal, whether you’ve completed treatment, are still in treatment or are living with metastatic disease. Called fear of recurrence, this common side effect can appear any time during or after treatment and last months or years.

Though you may never be fully rid of the worry, there are practical ways to lessen the stress it causes or make disappear for periods of time. During the month of July, get your questions answered about how to cope with the lingering fear that breast cancer might come back, what to do if the fear becomes too much, and where to find support when you need it.

If you want to know how to manage the stress of constant worry, how to know what triggers your fears to resurface and how to prepare for those triggers ahead of time, ask our expert, Shara Sosa, MSW, LCSW, today.

We will answer as many questions as possible, but we cannot answer all questions submitted. We will post answers on an ongoing basis throughout July. Submit your questions now; check back here for updates.

Remember: we cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare provider because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counseling or medical advice.

I am wondering what to do about the constant fear it will come back. I feel like the doctors don't look at enough or my insurance is not covering enough tests and procedures for me to get a full “all –clear” at checkups.

My mother had breast cancer at 72 and had a mastectomy. She took tamoxifen for years. Her breast cancer recurred in her lungs at 89 and took her life. I had breast cancer at 61, had radiation. I fear that my cancer will come back just as hers did. What should I do?

For 8 months I had no fear of recurrence but I have suddenly lost that confidence and also the ability to know if the physical discomforts I have recently experienced are real or the result of anxiety. Are there strategies I can use to regain an effective way of assessing my physical health and differentiating from emotionally-generated concerns?

Why do I experience such a dissonance between my intellectual understanding of my disease experience and my emotional response? I know I have been fortunate in my response to treatment. Yet still in the last 6 weeks my emotions have kept me from living in full appreciation of a rich and full life. Could you provide information about how best one deals with it? 

Question: I am wondering what to do about the constant fear it will come back. I feel like the doctors don't look at enough or my insurance is not covering enough tests and procedures for me to get a full “all –clear” at checkups.

Ms. Sosa: It can be very frustrating to feel like you are not getting the tests or procedures you should be. Being your own advocate can be exhausting at times. In reality, there will never be enough tests or verbal confirmations given to take away your fears. Time away from active treatment and from feeling short and long-term side effects from treatment often help. While it can be liberating to complete active treatment, it can also be very difficult feeling the loss of the safety net of seeing your health care team frequently.

Many health insurance companies have employed breast care navigators that are available to explain why a test or procedure may or may not be recommended for your personal circumstances. If that service is not available, please check with your oncology office to see if they have a navigator or person who may be able to better answer your questions. Having these answers may help to reduce anxiety and reassure you that you are receiving the best possible health care.

Some fear during cancer survivorship is a normal part of the process of moving towards recovery and wellness. However, if this fear is interfering with your daily life for more than a few weeks, I would recommend reaching out to a mental health provider within your community to receive some support.

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Question: My mother had breast cancer at 72 and had a mastectomy. She took tamoxifen for years. Her breast cancer recurred in her lungs at 89 and took her life. I had breast cancer at 61, had radiation. I fear that my cancer will come back just as hers did. What should I do?

Ms. Sosa: It is unfortunate that your mother’s breast cancer returned, however she had an additional 17 years before she died. This means that her mastectomy and tamoxifen extended her life 17 more years than she would have had without those treatments. It also means that we have had at least 2 more decades of research and advances in understanding and treating breast cancer.

For you moving forward, I would encourage you to make sure that you have faith in your healthcare team. Trusting them and their expertise will help to reduce your fears. It is also important that you have faith in yourself. You know your body and how it works better than anyone. I imagine you are very informed about breast cancer risks and preventions. Cancer takes away our power, leaving us feeling helpless. Feel free to take charge of your future and do things that maintain good health and have fun. I haven’t seen nearly enough research on having fun but I certainly know it improves overall quality of life.

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Question: For 8 months I had no fear of recurrence but I have suddenly lost that confidence and also the ability to know if the physical discomforts I have recently experienced are real or the result of anxiety. Are there strategies I can use to regain an effective way of assessing my physical health and differentiating from emotionally-generated concerns?

Ms. Sosa: I am a big fan of the “2 Week Rule.” I have gone back and forth with a local oncologist who says to wait 4 weeks before calling the doctor. But I have explained that once you have had cancer, 4 weeks might as well be 4 years when it comes to waiting. Here is what the 2 Week Rule looks like: When you notice a symptom such as a headache, jot it in a symptom journal. If the symptoms change drastically before the end of 2 weeks, throw out this rule. However, in many cases people find at the end of the 2 weeks, they have only had a headache two or three times and were able to manage it with an over-the-counter medicine.

Schedule an appointment with your doctor if your symptoms have been persistent. Having the journal will also be helpful during your appointment for your doctor to create a more informed plan.

I would also encourage you to go back and identify what were you doing during the last 8 months that was helping you maintain your confidence. What is no longer working? Sometimes scheduling a well visit with your general practitioner can help to boost confidence again.

One other critical thing that sometimes people forget is that they have grown older since the diagnosis and those physical discomforts may be a side effect of aging.

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Question: Why do I experience such a dissonance between my intellectual understanding of my disease experience and my emotional response? Intellectually I know I have been extremely fortunate in my response to treatment. Yet still in the last 6 weeks my emotions have kept me from living in full appreciation of a rich and full life. Could you provide information about why this might be the case and how best one deals with it?

Ms. Sosa: If I could solve the mystery of how to keep our intellectual brain and our emotional brain in sync, I might just be a millionaire. On a more serious note, it can be helpful to go back to basics. There are some things you have been doing to manage your stress and fears that were working. Identify what they were and bring them back around.

Although cancer brings with it a storm, it can also re-center us into appreciating the day. For example, at the beginning or end of each day, acknowledge what might be better. Maybe today was a day where you didn’t have any pain or it was greatly improved, or a day where someone noticed your hair had grown some since he or she last saw you, or you spent time doing something kind just for yourself.

Deep breathing and positive affirmations can help to quiet unpleasant thoughts. Taking 5 deep breaths whenever you feel yourself starting to spin can interrupt them. Adding in a positive affirmation such as “I feel strong and powerful today” may be a good addition to the breathing. This day is the only day we have. It sounds cliché but I write this with great sincerity.

Intellectually speaking, review what you know to be true. As far as you know, you are well and there is no evidence of disease.

It is common to struggle with this kind of dissonance but if you feel this doesn’t pass in a timely manner that is comfortable to you or it is interrupting your daily life, some short-term counseling with an oncology therapist might be very helpful. Support groups can also be very helpful in speaking with other people who may be having similar experiences as you.

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Denver, CO  ·  September 13, 2014

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