Fear that one’s breast cancer will “come back” is a wretched way to live, and there’s no way to wipe out this daily dread. Or is there?
For some, this fear is temporary, while for others, it becomes an ongoing and often debilitating challenge.
Which category a breast cancer survivor ultimately falls into might be determined by life experiences, or it could be influenced by religious faith, or any number of variables which could include having had relatives suffer a fatal recurrence of breast cancer.
An innovative study conducted on breast cancer survivors reveals the profound impact of this fear on nearly every aspect of their lives — emotional, behavioral, cognitive, relational and professional.
My sister was diagnosed with a recurrence approximately eight years after her initial diagnosis, which was at stage 2B.
Apparently, up to that time, she just went about her active life as usual, not giving significant thought to the possibility of a recurrence.
The study, led by Dr. Shelley Johns, even notes that for some survivors, worry of a recurrence is only mild and intermittent.
But fear of recurrence, as frightening as this is for some patients, might not be as terrifying as adjusting to an actual recurrence.
My sister lives with stage 4 breast cancer, but the recurrence is limited to only her bones.
Certainly, this is much less emotionally traumatic than if she were told it was in her brain.
Breast cancer in the bones can remain there for years while the patient lives a productive life.
Knowing that there are these malignant tumors in her bones (daily medication only shrinks them; doesn’t destroy them) has not stopped my sister from being highly productive and fearless.
Every three months she gets a CT scan of her chest for surveillance of organ spread.
Incredibly, she doesn’t let the knowledge that eventually she might be told, “It’s in your lung,” interfere with quality of life.
Study on the Fear of Breast Cancer Coming Back
Those who experience greater fear of recurrence tend to have a more significant impact across a wider range of areas and report it more often in their daily lives.
According to Dr. Johns, a senior author of the study and a researcher at the Regenstrief Institute and the Indiana University School of Medicine, survivors in the study were disease-free and attempting to rebuild their lives post-treatment.
For some survivors, the fear of cancer stays on the sidelines, while for others, it’s a constant concern that is easily triggered in various parts of their life.
This fear can be highly disruptive, ranging from moderate to severe.
Survivors who experience milder fear may only have occasional moments of anxiety, such as difficulty sleeping the night before medical appointments.
On the other hand, those who have a more intense fear may isolate themselves, retreating from social activities and even avoiding thoughts related to cancer altogether.
My sister, despite knowing she has malignant tumors in her bones that can spread to her lungs or liver at any time, somehow manages to have enough life enthusiasm to conduct activities that would be overwhelming or impossible for survivors who are crippled with daily fear.
I don’t know how she does it: Living as though she were never even diagnosed in the first place.
An example would be going all-out with the Christmas decorations and spending a lot of time baking for other people.
Jeez, she’s even a full-time mental health counselor (though the counseling is not related to surviving cancer; it just happens to be her current field).
Severe fear, also known as clinical fear, affected about 74 percent of the participants in the study.
The survey included responses from 347 women who shared how this fear affected them.
Many reported feeling stress, irritability and sadness.
Fear of recurrence was frequently intrusive, interrupting their focus and even impacting their work.
Such a Dark Place to Live
Some women expressed embarrassment because they believed their worry was greater than what other survivors have experienced.
Others found it emotionally difficult to be with their families, as they were constantly preoccupied with thoughts about how much time they had left with their loved-ones.
The prognosis for breast cancer bone metastases isn’t good.
My sister knows there’s an exceedingly tiny chance she’ll live long enough to have a conversation with her not-yet-born grandkids (she has three adult kids).
- Her take, as she had explained it to me, was that nobody knows how much time they have left, that anyone could die in a car accident tomorrow.
- And that we can’t go through life worrying when our time will be up.
The title of the paper by Dr. Johnson, et al, includes the phrase “out of a dark place,” quoted from a survivor who described joining the study as a hope for emerging from a difficult emotional state.
Many survivors shared how fear of recurrence shaped their everyday experiences.
One survivor mentioned how fear prompts her to adopt healthy habits, like eating fresh produce, exercising with consistence and managing stress.
Another survivor described how even minor pain in the upper chest immediately triggers anxiety and irritability.
For some, cancer-related triggers are everywhere, from media advertisements to the anniversaries of their diagnosis.
My sister’s initial diagnosis was days before Christmas; talk about an anniversary.
You’d think that every holiday season would be wrenching for her.
But it’s just the opposite; she gets super excited with the home decorations, the baking, the shopping, the gift wrapping, the whole nine yards.
According to the paper, it’s easy for survivors to be reminded daily of their situation, whether through news, personal milestones or public health messages.
Some survivors admitted they would get lost in their thoughts for hours, finding it hard to engage in normal activities like watching TV or socializing.
Some resorted to negative coping behaviors like excessive online shopping or hoarding.
Coping Strategies
Survivors also shared the coping strategies they use to manage anxiety over breast cancer returning.
Many of them try to stay positive, sticking to healthy routines, including taking medications, exercising and getting enough sleep.
Others reported avoiding things that reminded them of cancer, such as unfollowing certain social media accounts or changing channels when ads related to cancer appeared on TV.
Some survivors spoke to family members who had dealt with cancer longer than they had.
Others found solace in practices like prayer and meditation, which helped them stay in the present and enjoy each day to the fullest.
My sister relies on her faith to maintain a positive attitude. She has told me that her situation is “in God’s hands.”
Although many participants in the study relied on avoidance to cope with their fear, Dr. Johns, who is also a clinical health psychologist, believes further research is necessary to understand whether these avoidance strategies are effective long-term or if they may hinder recovery in some cases.
Do you suffer from a disabling fear of breast cancer recurrence?
Maybe you’ve already tried many things to get out of this dark place.
But have you tried exercise, for which research shows can lower the risk of a BC recurrence?
Numerous studies show that physical activity can reduce the risk of recurrence and improve survival rates.
A major study published in the Journal of Clinical Oncology (2015) found that regular exercise after breast cancer treatment can lower the risk of recurrence by up to 40% and improve overall survival.
The Women’s Health Initiative study (2013) also showed that moderate-to-vigorous physical activity significantly reduced the risk of breast cancer returning.
Exercise improves immune function, reduces inflammation and regulates hormones like estrogen, which can fuel some types of breast cancer.
The American Cancer Society recommends at least 150 minutes of moderate-intensity aerobic activity per week.
What did the participants hope to gain by the study?
The women in the Johns, et al study, which was published in Supportive Care in Cancer (2024), expressed a desire for a sense of purpose, connection with others and more control over their lives as motives to participate.
They wanted to feel that they belonged to a community and could move forward with greater emotional security.
Lorra Garrick has been covering medical, fitness and cybersecurity topics for many years, having written thousands of articles for print magazines and websites, including as a ghostwriter. She’s also a former ACE-certified personal trainer.
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