Living with Uncertainty: Managing the Fear of Cancer Recurrence and “Scanxiety”

"Scanxiety" and fear of cancer recurrence diminish quality of life. Recommendations for peace despite living with uncertainty caused by fear of recurrence.

The truth is, we all live with uncertainty, but for people who have experienced cancer, the awareness is heightened. For some, the relief that comes from being declared “cancer-free” is short-lived and quickly replaced by a fear of recurrence. Among survivors, the fear of cancer recurrence can be so distressing it has a powerful, negative influence on the quality of life; affecting mood, relationships, and decisions for the future. This fear can become a daily catastrophizing worry that dominates thoughts.

 

The Harvard Health Blog states:

By 2024, an estimated 19 million will be living in the United States, a tribute to rapidly evolving options for diagnosis and treatment.

Fear of cancer recurrence

Fear of recurrence is normal and common amongst people treated for cancer. Once past the initial treatment, many survivors of cancer have cyclical increases in this fear, which coincide with anniversaries, upcoming scans, or follow-up appointments. Relief may be experienced after a reassuring appointment, but just like with the initial declaration of a cancer-free status, the fear can begin to build quickly. For those on 6-month follow-up schedules, this leaves little time between appointments to live life worry-free.

 

Enjoying life in survivorship means managing this common and normal fear to prevent the worries about life’s uncertainty from actually taking over.

 

Ni-Cheng Liang, MD is both a physician and a cancer survivor and has had to tackle what she has aptly termed “scanxiety”. She has found certain techniques helpful in managing life’s uncertainty. I am so grateful to her for sharing her story and recommendations:

 

"Scanxiety" and fear of cancer recurrence diminish quality of life. Recommendations for peace despite living with uncertainty caused by fear of recurrence.

Blog by Ni-Cheng Liang, MD:

Scan · xi  · e · ty

noun

A feeling of unease, nervousness, about an upcoming, or immediately past diagnostic study with uncertain results.

 

Too numerous to count scares. Too numerous to count episodes of scanxiety.  This is the price of survivorship. It is expensive, but worth every tear, every butterfly in the stomach, and every droplet of sweat, to remain here on this good earth.

 

This is an excerpt out of my first Caring Bridge blog post back in 2011:

 

I decided to do my first breast exam in 9 months after my incision and drainage from a left breast abscess from neglecting to pump during a busy night of call in the ICU.  Why hadn’t I resumed doing breast exams sooner? Laziness, no difference in survival, knew it was likely to be abnormal anyway had I started doing them sooner due to lactation, but what’s happened has happened, and I can’t do anything to change it. So, I actually found something. Right breast, 12 o’clock, it felt like another clogged duct, but this time, it was firmer. I thought to myself, no problem, I’ll just get an ultrasound.

I had no scanxiety because I was not expecting the worst result.

 

On ultrasound, it was a complex mass which meant biopsy. Luckily, the procedure was done the same afternoon. Perhaps the beginning of scanxiety? I was a little worried, but not that worried. I was hoping that it was necrotic fat, or a remnant of a clogged duct, or a fibroadenoma, anything but cancer.

 

Off I flew to the American Thoracic Society conference in Denver, CO, a day later. I had a poster discussion session on the 15th and was more worried about that than the biopsy results.  I figured no sense in worrying until the result came back in the next few days. I planned to go to the conference, learn and enjoy myself.

The day that changed my life forever

 

May 16, 2011, is the day that my life changed forever. I was having lunch with friends from residency between sessions at the conference when I got a phone call from the radiologist that did my biopsy. I hadn’t expected the results to be back so soon, and  I could tell from her voice that it was bad, “consistent with invasive ductal carcinoma.” I broke down, started crying, “I have breast cancer.”

 

Grateful for the presence of my friends consoling me, I had never been so scared in my life. All I knew was I had breast cancer, didn’t know what type, stage, what the plan was. I got on the next flight back to San Diego. On the way to the airport, I was debating when to tell my husband. I could tell he was scared too but was ready to endure all that came my way, by my side.

 

I enrolled in the ISPY 2 clinical trial, took a year medical leave for treatment, went through 5 months of chemotherapy, 3 surgeries, and I’m here almost 9 years later.  In between acute treatment and now, new pains, new abnormal surveillance scans, all leading to more episodes of scanxiety.  I’ve lost count how many I have had. Scanxiety is part of my life. It returns, catastrophizing, thinking of what-ifs, and the worst-case scenario.  Medical training has groomed me into being an expert catastrophizer.  But, when I turn it towards myself, it’s not always helpful, and often can worsen anxiety.

 

"Scanxiety" and fear of cancer recurrence diminish quality of life. Recommendations for peace despite living with uncertainty caused by fear of recurrence.

Mindset shifts can help manage the fear of recurrence:

Over the years, I’ve learned a few mindset shifts that I’ve found to be helpful:

 

1. Scares are inevitable in survivorship. I try to continue to live my life just as I had originally intended until I receive an objective message to the contrary.

 

2. When I notice myself going through what-ifs and unhelpful catastrophizing, I use the RAIN mindfulness practice, taught by Tara Brach, Ph.D. (see some of Tara’s books at the bottom of this post).

 

  • Recognize that the situation arising is uncomfortable/anxiety-provoking
  • Accept the situation for what it is and allow it to be here because it’s already occurring.
  • Investigate: name body sensations and emotions occurring, notice thoughts about the situation as one sees clouds passing through the sky, or leaves floating on a stream.
  • Not Personal: remind yourself that this situation is unlikely to be an attack on your moral fiber as a human being, it may be a pattern of behavior that you experience in your life, and a similar situation may arise in the future- try not to take it so personally.

 

3. I use the episodes of scanxiety as opportunities to deepen my mindfulness meditation practice. I use them as opportunities to re-focus on the present moment experience, my priorities, and to bring gratitude to all that remains good in my life despite the uncertainty.

Living with uncertainty: The only certainty in life is that it’s uncertain.

 

The only certainty in life is that it’s uncertain. We are unable to change situations where more testing is needed, or the test results, but we can train ourselves to choose healthier responses to uncertainty better.

 

 

Dr. Liang is also a mother to two girls, an award-winning pulmonologist, and a mindfulness teacher. She teaches mindfulness to patients, all levels of medical trainees, healthcare professionals and administrators and is a national speaker.  Check out her website www.ncliangmd.com for free mindfulness recordings, and to learn more about Dr. Liang and her offerings.

 

Additional resources for learning radical acceptance, mindfulness, and living in the here-and-now:

 

Download this free form to help you track and understand your health history! 

Keeping track of the information given during medical visits, including diagnosis, plan of management, recommendations, directions for medication, etc… can be difficult even for people who are not feeling anxious during an appointment. The information is coming so fast!

 

This free form will make it easier to keep track of all the medical information you need to remember. If you fill out the form each visit you can keep a coherent log of your appointments and history. This will make tracking changes and health history much easier to remember and will help ensure you know and understand the important details of your care.

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