How to Face Fear of Recurrence During Cancer Survivorship

A CURE® reader's question about fear of recurrence is answered by a retired nurse practitioner. Here's what she had to say.

For many cancer survivors, fear of recurrence typically heightens anxiety, which can stem from different many factors and situations. It’s important to learn how to tackle this fear, especially years into survivorship.

A recent #CUREConnect post on social media asked our audience, “What’s a question you wish you asked or could ask your oncology team?”

One CURE® reader responded, “How in the world do I deal with the anxiety about possible recurrence? I’m 15 years out from having breast cancer but still deal with the anxiety.”

Jody Pelusi, a retired family nurse practitioner and advanced oncology certified nurse practitioner, explained fear of recurrence and offered some ways to help survivors manage these fears.

Pelusi: Fear of recurrence is the most common concern among individuals who have been diagnosed with cancer. Most report that the anxiety or fear of recurrence is more apparent during the first three to five years and gradually lessens over time. However, this does not mean it goes away completely, but it is less noticeable and does not interfere with their overall sense of well-being.

Sometimes the news of a famous person, relative or friend diagnosed with cancer, or a recurrence can trigger anxiety. It can also be triggered before undergoing routine screening testing or when there is no follow-up testing indicated after a certain amount of time has passed since the diagnosis. One of the important ways to address anxiety is to understand the facts related to the type of cancer and the potential for recurrence.

There are many types of breast cancer, each with its own characteristics, history and trajectory. It is important for survivors to discuss this with their oncology provider or primary care provider, especially because many long-term survivors are seen by primary care after a set number of years post-cancer treatment).

During this visit — via in-person or telemedicine — the goal is to identify what the relative risk of recurrence is for survivors. It’s best for them to discuss how they will be monitored but be aware there are no recommended guidelines for routine follow-up testing after the first few years post-treatment. Inquire about what potential signs and symptoms they might experience if a recurrence is to happen. They should always know to report any symptoms that arise.

We are still in the infancy of truly understanding the true needs of cancer survivors, thus having this type of discussion can assist them and their providers to determine what type of follow-up plan and support they need going forward. One important area to address is how they perceive their previous cancer diagnosis, its impact on their life and the lives of their family members. Providers can help them determine the best way to address their needs and concerns.

Exploring concerns about their anxiety, what triggers it and how often it occurs is also essential. If their fear or anxiety continues to affect their ability to function the way they think it should, then seeking some professional support may be very helpful. They should remember that their cancer experience is only a part of their life, not their entire life. Cancer does not define them. There is an awareness that individuals who go through a significant illness, such as cancer, will experience some changes in how they view themselves, family, friends, coworkers, neighbors and life in general.

Survivors are challenged to find those good lessons learned throughout their cancer experience and realize they can make choices that will enhance their lives after cancer.Many survivors find that volunteering, helping others and giving back assists them in focusing on others, the future and the wonderful gifts they have to share with others.

Since there are no guidelines for long-term survivors, their health care provider’s focus will be on encouraging them to live as healthily and actively as possible and to follow the routine guidelines for cancer screening (routine screening for other cancers) and general health screenings.

Fifteen years ago, breast cancer was approached differently than today. As we learn more and more about the disease and its characteristics, new treatments and approaches to care evolve. This does not mean that you received any less therapy, survivors were given what the standard of care was at the time and obviously they have done very well.

Cancer survivors’ inner strength is evident by asking the question, others may also share the same concerns. Identifying and acknowledging their anxiety/fear of recurrence is crucial to moving ahead. Share this with health care providers and together determine the next steps.

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