Close Calls and The Fear Of A Recurrence

by Jane Ashley

At the beginning of our treatments, most of us didn’t realize how the fear of recurrence would impact our lives for many years afterward. We didn’t even know the word “Scanxiety.” Most of didn’t realize how frequently we would return for checkups that include blood work and scans.

Keep Calm

Put all of these things together, and we have scenarios where a tumor marker test or a scan or a new pain or symptom might point towards a recurrence. But, upon further investigation and additional testing, we are still NED (No Evidence of Disease).

Fear of Recurrence: The Realities

Fear of recurrence is pervasive among cancer survivor. It often tops the list of concerns. In fact, about half of all cancer survivors suffer moderate to severe levels of anxiety associated with their fear that their cancer will return.

Excessive fear of recurrence causes anxiety, heart palpitations, insomnia and depression. Fear of recurrence can impact our job performance. This fear may eventually rob us of our quality of life. We endured the treatment only to discover that fear occupies those dark places in our mind and severely impacts the life we fought so hard for during treatment.

Fear Of Recurrence

But are these fears always justified? For most patients, the answer is no. Most recurrences occur within the first two years after treatment ends.
However, every person has a different risk of recurrence based on the stage and kind of cancer that they had. Talk to your oncologist about your fear of recurrence. Your oncologist can provide an honest assessment of your particular risk based on the details of your cancer. They will tell you the symptoms of a recurrence, how you can reduce your risk of recurrence, and what follow-up appointments, lab work and imaging tests are critical in surveillance for a recurrence.

But, what if my scan or bloodwork shows something new or different?

First of all, we have to realize that radiologists are proactive — it is their job to find to find abnormalities, changes and deviations from the norm. They also want to avoid being charged with malpractice because they didn’t find something.

When our oncologist orders a scan, they request that the new scan be compared to your last scan and find changes. These are frequently called “restaging” scans.

The radiologist is looking for changes.

If a nodule, that has been stable in size for the past year, increases in size, they report that change.
• If two new small nodules appear in your right lung, they report this.
• The radiologist usually confirms that a stable nodule or calcified area is still present.

Radiologists find “things” that are anatomically abnormal in the course of looking for something else. Many lung nodules are discovered in a chest X-ray or chest scan looking for something else. These incidental discoveries are called incidentalomas an asymptomatic tumor found coincidentally during a scan. With improved imaging and more use of scans (instead of X-rays), more of these incidental discoveries are being made. Radiologists are sometimes caught between a rock and hard place — our medical team wants to avoid unnecessary biopsies and additional imaging for an incidentaloma that is likely to be benign, yet they must ensure that something new is not a metastatic nodule. 

Incidentalomas

Guidelines help radiologists point out the ones most likely to need further investigation.

My personal experience includes a PET scan which determined that a radiated lung nodule was indeed, dead and had turned into scar tissue. There was no SUV uptake; the nodule, although larger, was “cold.” However, the PET scan showed an area of mild SUV uptake in my pre-sacral area (the area in front of our tailbone) which “could represent metastatic recurrence or residual disease.” So in my situation, my oncologist ordered a rectal MRI which is an excellent imaging tool for soft tissue. My rectum was removed due to Stage IV rectal cancer, and my uterus had become retroverted and was occupying the space where my rectum had been. There were some tense days while waiting for the MRI results. But it was not a recurrence. 

Finding balance … being vigilant while staying sane

It’s not easy as most of us have learned from experience. It would be fool-hearty to ignore a new symptom related to our cancer diagnosis. But it might be something coincidental that pops up. A new tiny nodule in our lung might be scar tissue from bronchitis or walking pneumonia. 

Your medical team might recommend “wait and see.” As challenging as it is for a patient to wait, your doctor wants to avoid unnecessary medical procedures.

These incidental finds are common. How common? A 45 percent of incidentalomas occur in chest CTs. The rate is 38 percent in CT colonoscopies. The rate is 34 percent for cardiac MRIs. Brain and spine MRIs have a 22 percent rate of incidentalomas.

If we are more than 3 years out from our diagnosis, keep calm and carry on. If their logic about what to do next sounds reasonable, then you’re probably safe if they suggest to have another scan in 3 months. But if you’re symptomatic in the area where some incidental was discovered, you might consider a second opinion.

Close calls are just that. The majority of radiologists perform due diligence by pointing out coincidental findings. Then our oncologists do their best to sort out the information. There are now enough studies that our oncologists can make prudent decisions about the possibility of an incidental lesion being malignant.

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