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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, Living Beyond Breast Cancer expert, Shara Sosa, MSW, LCSW, answered your questions 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.

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? 

I am unable to take tamoxifen. Because of an undiagnosed pain my oncologist is holding off on starting an alternative. I am terrified the cancer will come back in my other breast or somewhere else. I do not sleep for long because I am so stressed about this. What should I do?

My breast cancer diagnosis and treatment was 4 years ago. Lately I've been untypically obsessed with the idea that cancer is coming back - not breast but another kind. Is this kind of late reaction within the range of normal?

What do you do when you think you feel a lump, but your brain tells you that you are still taking so many chemotherapy drugs that nothing could possibly grow?

I was diagnosed with stage 1 invasive DCIS. I am BRCA2 positive. How do I calm my nerves and not constantly worry that I may drop dead of a cancer one day?

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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Question: I was diagnosed with breast cancer in April 2014 and am unable to take tamoxifen. Because of an undiagnosed pain my oncologist is holding off on starting an alternative. I am terrified the cancer will come back in my other breast or somewhere else in the meantime. I do not sleep for long because I am so stressed about this. What should I do?

Ms. Sosa: I am sorry that you are unable to take tamoxifen. I hope your doctor is able to offer you an alternative once your pain is identified and treated. Living with an unknown pain is definitely stressful and can feel all-consuming at times.

Sleep is your brain’s opportunity to rest and rejuvenate. I would recommend talking with someone you trust on your healthcare team about how to regulate your sleep while you are doing additional things to manage your stress. Cancer takes away our sense of control and the waiting for results can be very challenging. However, you do have control over how you manage your intrusive thoughts and worries.

Guided meditation can help regulate your breathing and relax your mind and body. Research shows that only a few minutes each day or throughout your day, can be very helpful. Bellaruth Naperstak is a leader in this field and can be found on the internet. Thought interruption is another technique. When you begin to have a disturbing and fearful thought, choose to think of something more helpful. For example, if you think “I am terrified the cancer will come back in my other breast,” an example of a more helpful thought might be “I trust that my healthcare team is providing the best care available.”

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Question: My breast cancer diagnosis and treatment was 4 years ago. Lately I've been untypically obsessed with the idea that cancer is coming back - not breast but another kind. Bloating, cramps and gas may be colon cancer, and some skin lesions surely are melanoma! I'm getting evaluated for both. I'm also factoring in this anxiety when making decisions. Is this kind of late reaction within the range of normal?

Ms. Sosa: Yes, it is normal to have worries throughout survivorship especially when unfamiliar symptoms develop. You are taking action. You are being your own health advocate. You are being evaluated and ruling things out. This is an example of taking charge. Sadly when people are finished with active treatment, they often struggle with the “cancer hang nail.” A fear that everything that you can’t explain must be cancer. This is a normal response found in many cancer survivors. However, there is a need for balance.

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Question: What do you do when you think you feel a lump, but your brain tells you that you are still taking so many chemotherapy drugs that nothing could possibly grow?

Good question. People without cancer have lumps and bumps from time to time. Getting to know your body is important. Taking a breath and asking yourself some questions may be helpful. Such as: Is this a new lump? Could it be scar tissue because it is on or near a scar line? If I found it on a Tuesday, is it there consistently on the days to follow? Keep an eye on it. Talk with someone on your healthcare team if you can’t rid yourself of this concern on your own. Sometimes calling a friend or taking your concern to a cancer support group can help to calm your fears and quiet your brain.

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Question: I was diagnosed with stage 1 invasive DCIS. I am BRCA2 positive. How do I calm my nerves and not constantly worry that I may drop dead of a cancer one day?

It sounds like you caught your cancer early and received some valuable information from the genetic testing. I imagine that genetic information helped in making your treatment decisions that may increase your chances of long-term survival. Take some comfort in knowing you have made the best choices given unpleasant options.

I tell people that making decisions about your cancer is like going to a buffet where all the food looks gross, but you know you must choose something or you will go hungry. It is a very trivial analogy, comparatively speaking, but the message is the same. You are doing the best you can based on the information you were given. Worry is a useless emotion unless it propels us to be proactive. Remind yourself that worry is robbing you of this moment. The opportunity to do something that could bring you joy or comfort.

Extreme worry interferes with our sleep and our daily activities. If constant worries prevent you from experiencing joy and your ability to be in the moment, please don’t hesitate to find an oncology therapist within your community or explore a medication evaluation with a mental health provider.

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Denver, CO  ·  September 13, 2014

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