Receiving scan or test results can be one of the most anxiety-inducing experiences anyone touched by cancer can experience.
You know these results will either fill you with joy due to treatment success or propel you forward to the next path in care which can be accompanied by feelings of grief, fear, anger, etc.
In today’s day and age, a new complex layer is added to the experience of getting these results. Nowadays, most healthcare facilities make test and scan results available for the patient to read prior to seeing his/her doctor.
This post addresses the pros and cons of this process to help you answer the question, “Should I look at my scan results before seeing my doctor?” Remember that everyone is different in how they choose to process this information.
“Scanxiety'' is an all-too-real feeling associated with cancer-related scans. Undergoing the scan and waiting for results and the doctor’s recommendations can produce a high degree of anxiety, also known as “scanxiety.” This post focuses on scans, but the same can be said for other test results.
I’m the one connected to my mother’s patient portal. This means, at any hour of the day following her scans, I might get an email notifying me that test results are available on my mother’s portal. The email usually looks something like DONOTREPLY@<insert institutions name here>.org.
Seeing this is enough to get my heart pumping and my sweat glands working and knowing it can come at any minute keeps me on edge for a prolonged period of time.
Then comes the decision: Do we look at the results, or do we wait? Let’s break down the pros and cons.
CONS:
1) Misinterpreting the information presented.
At the end of the day, no matter how knowledgeable we think we are about cancer, there’s always the possibility of misinterpreting what we’re reading. While I like to refer to the “impressions” section of scan reports to sum up what is happening, sometimes it’s not clear-cut. We must remember that most of us are not medical professionals, so we might not be fully understanding the scenario, which brings me to my next point…
2) Blowing things out of proportion.
It’s easy to blow scan results out of proportion without a medical professional walking you through them. For example, when I first read my mother’s scans that said “innumerable” lesions in the liver, my mind couldn’t even comprehend what was going on. For a week, I sat in worry, only to learn that less than 25% of her liver was compromised, and not a single doctor was worried. At other times, we might read that there has been growth, but without context of what is enough growth (1mm? 5mm? 1cm?) to warrant a change in treatment. Sometimes test results are just too complex for us to understand.
3) Adding stress and anxiety.
While keeping the two previous points in mind, reading news that might not be what we wanted can send us into a spiral. I’ve been there. After reading of progression, my body goes into panic mode - loss of appetite, headaches, and numerous Google searches. It’s important to read scans with the awareness that your mind can take you to some scary places.
4) Not having immediate access to the support you might need.
The last point I’d like to touch on is the lack of access to a medical professional the second after you read a scan. On one of my mother’s first scans, I learned that her splenic vein was blocked completely by the tumor on her pancreas. I wanted to call a doctor immediately and schedule her for surgery at that very moment. But, given that it was a holiday weekend, I knew I’d be waiting at least four days. The best and most immediate feedback is always available at appointments.
PROS:
1) Allowing yourself the possibility of alleviating stress, pending positive results.
I always like to err on the side of good news. Often, when scan results come in, I think, “I should look now so we can celebrate stability and alleviate this stress!” While we’ve been blessed with many stable scan results, you just never know what’s waiting for you in the impressions. But, there have been many times when I’ve been grateful to read of stable scans, before going into a holiday weekend, a vacation, etc. It’s certainly risky, but it’s been worth the pay-off when we’ve been blessed with stability.
2) Giving yourself time to process the information.
When my mother was first diagnosed, it felt as if textbooks of information were being thrown at us, and often we’d leave an appointment forgetting what was said and wishing we had asked many more questions. But this is often the reality of cancer appointments. We’ve learned how to combat this along the way but tackling this issue will be different for everyone. If scans show changes, looking at them before the appointment allows you time to process the information at home, experience your feelings and be ready to focus at the appointment. However, it’s important to find a support system, whether it be with another patient/caregiver, a family member, a therapist, or whatever works for you, because processing such information can take a toll and is not for everyone when a doctor isn’t present to explain things.
3) Allowing you to formulate questions for your appointment.
Once we’ve had time to process the information, we then get to work on formulating a list of questions to bring to our appointment. Typically, we get the results 5-7 days before actually seeing the doctor. I use that time to read articles, post on Facebook groups, and talk to other people - and then I jot down every question that comes to mind. This makes me feel like I have some control over the situation and to know that I’ll have asked everything on my mind to make me comfortable with whatever step is next.
4) Ending the anticipation.
Sometimes there might be merit to just ripping the Band-Aid off and finding out what’s going on. The wait and anticipation can be just as bad as the reality of reading whatever is waiting in the scan impressions. This varies from person to person, as everyone copes differently with this process.
I’ve learned that I’m the type of caregiver that must read the results as soon as they come in. There have been multiple occasions when I’ve created excess worry due to looking at the reports and there have been times when I’ve relaxed and celebrated after reading the reports. Each time is different, and each time I experience new emotions. I’ve yet to find the perfect balance, but I’ve learned some things along the way:
1) Learn your healthcare facility’s schedule for releasing scan results. This can mentally prepare you for when to expect results so you aren’t needlessly worrying every time you refresh your email’s inbox.
2) Schedule your scans closer to your appointment. Some facilities require at least a week between scans and the appointments, but others will see you the same day. This is a question to ask your care team.
3) Know your comfort levels. It might take time to do this but find out what works and what doesn’t work for you.
4) Set limitations. Maybe this means only allowing yourself to look at the results the day before or the morning of the appointment; that way, you have enough time to process the information and formulate questions, but not extra time for worrying.
5) Consider your daily quality of life. Don’t let scanxiety consume your days. (However, I type this knowing that, even after three years, I haven’t mastered this yet.)
So… to check or not to check scan results? Ultimately, there is no right or wrong answer. Some people prefer to see the scan results prior to the appointment, and others would rather wait. But, if you’re like me, you live in an area of back-and-forth as to what is the “right” answer. After nearly three years of this, with some scans that have been amazing and others that have not been as favorable, my mother and I have made it through each one. But remember there’s plenty of support out there to help you through whatever you’re going through. You are not alone.
This blog is for educational purposes only and does not constitute medical advice. It does not provide a medical professional’s opinion or advice nor is it an endorsement for particular treatments. You are advised to seek appropriate licensed medical/professional help and discuss your individual care and treatment plan with your medical team.
The content in this blogpost is the opinion of the author and the information is neither provided by nor endorsed by pharmaceutical companies.
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