Why fear of recurrence happens

Fear of recurrence is very common among people who have had breast cancer. How much fear of recurrence impacts any person depends on personal health history, access to information, social supports, personal coping style, and other factors.

Personality, lifestyle, and social support

Many factors influence the fear of cancer coming back, including:

• Your personal coping style
• Situations impacting your life now (marriage, kids, work, etc.)
• Past mental health
• Whether you feel you have a support system to fall back on
• Whether you have family members or friends who had cancer recurrences

It’s normal to struggle to talk about fears of recurrence. Most people want to focus on the fact that you are done with treatment and feeling better. They want to believe you are physically and emotionally well.

Because people don’t see you going to lots of medical appointments anymore, they may not understand the impact breast cancer has had on you. Those close to you may not know that you feel your support has disappeared. Share your thoughts and concerns with them.

Your history and diagnosis

It’s normal to worry about recurrence even more if you have a family history of breast cancer or because of the type or aggressiveness of the cancer.

Although it’s never possible to predict the exact risk of the cancer coming back, you may have been given statistics about your risks. If you know you have a breast cancer gene mutation or you were treated for a more advanced or aggressive breast cancer, you may be especially frightened. Remember that statistics are based on large populations of people, but you are just one person. The statistics you find won’t always be true for each person.

Triple-negative breast cancer

If you have triple-negative breast cancer and you had surgery, chemotherapy, immunotherapy, or targeted therapy such as PARP inhibitors, you took the best treatments available to you. Still, since triple-negative breast cancers are aggressive and more difficult to treat, and there aren’t ongoing treatments available today for triple-negative breast cancer like there are for hormone receptor-positive or HER2-positive breast cancers, your fear of recurrence may be intense.

Ongoing hormonal or targeted therapy

Taking a daily hormonal or targeted therapy may make you feel more secure that you’re doing everything possible to protect your health. But taking them also may remind you of your diagnosis. Plus, these medicines can cause uncomfortable side effects that interfere with the quality of your life.

Keep taking these medicines according to your doctor’s instructions, but don’t be afraid to talk about the side effects. Your doctor can help you find ways to manage them or may even be able to switch your medicine.

Genetics and family history

Some factors suggest there may be a genetic link to breast cancer, such as

• Having a strong family history of breast cancer or ovarian cancer
• Being diagnosed before age 50, or
• Being diagnosed with triple-negative breast cancer before age 60

If you have these or other indicators of genetic risk, talking with a genetic counselor and having genetic testing are important steps you can take to protect your health, and can potentially ease fear and anxiety.

If genetic test results show you have an inherited mutation in certain breast cancer-related genes such as BRCA, it’s normal to worry about the increased risk for developing breast cancer again or developing another type of cancer.

While it is true that people with a BRCA mutation have a higher risk of developing a second primary breast cancer, having this mutation does NOT mean you have a higher risk of the original cancer returning. Your doctors will take this into consideration as you make decisions about your follow-up care. Your doctor and genetic counselor can also help you choose the best ways for you to lower your risk of developing a new cancer.