Today, I want to delve into two hidden aspects of cancer survivorship - time toxicity and mental health.
The best way to talk about these themes is to illustrate them with a story that unfolded over the last two weeks for me. I’m 2 years out of active treatment on a survivorship plan that includes a full check-up every 6 months, imaging with a mammogram and an ultrasound every year, and a breast MRI every 3 years. My breasts are dense, so the sensitivity of the standard screening mammogram isn’t good enough to catch a small potential recurrence or new cancer.
An MRI is an excellent diagnostic tool that sometimes results in false positives. As a patient who has now had countless MRIs, I know that both from a scientific and experiential lens. A false positive here means that I might need to get a biopsy. Now a biopsy (which I have also had multiples off) isn’t the worst thing in the world. It’s a short procedure, and you quickly get done with it. The worst part of these tests is the waiting. Waiting is hard. Grappling with uncertainty is likely difficult for anyone. However, as a patient who has been down this path before, the waiting is sometimes more emotionally complicated. As a survivor, you know how bad it can get. Waiting is no longer neutral for a future you don't know anything about. This time it’s waiting for a known future filled with twists and turns.
I’m sure a good therapist will likely point out the many problems with the statements I just made and might even point out how this is an opportunity for me to get stronger and learn to grapple with uncertainty. I do need to get better at managing uncertainty. I like knowing, and I like being in control of my life. Waiting for test results is the ultimate form of loss of control. That is what the last two weeks were for me.
With that backdrop and my own emotional baggage around waiting for test results, I want to point out that our health systems are arcane. You would imagine that given the digital age, we live in, where we can purchase furniture with 1-click, sit in a driverless taxi, get access to CART-T therapy, and have Chat-GPT build entire businesses, our healthcare system might be able to give us test results on time.
It took 11 days and 10 hours of active engagement of my time and an unquantified amount of the hospital’s time for me to get my MRI results released to my patient portal.
I mapped out my interactions with the health system and clocked how many minutes, hours, and days it took for an MRI result to be released. See the diagram below. I mapped my experience to the lack of a patient experience in a consumer world.
Here are a few highlights from the diagram above. It includes:
- 10 phone calls
- Figuring out how to get a CD from 1 hospital to another. Then being told them that the hospital couldn’t quite figure out how to download the images from the CD and upload it into their system.
- Figuring out how to use my fax machine (Yes, I have one. Any patient actively using the healthcare system needs one).
- Reminding 2 hospitals that they are electronically connected.
- Being told that the radiologist is on PTO middle of the week; then being told that they are actually on site but haven’t signed the report; then being told, actually, they are waiting on older images.
- Reminding myself to be kind and patient and that it’s not the operator’s fault that the health system is broken.
I have a full-time job. That’s 10 hours of lost productivity. That’s 10 hours of incredible frustration. It’s 11 days of scanxiety, worrying that the MRI might pick up something or show something that will require me to replan my life.
I’m a survivor who is not active in treatment. I can communicate with the hospital and if required, drive back and forth from the systems. What if this had played out for someone on active treatment? What if it happened to someone who didn’t have the luxury of time? What if it happened to someone who lived 2 hours or more from their hospital? What if it happened to someone who didn’t speak English? 11 days and 10 hours is meaningless in the grand scheme of life for someone healthy. For cancer patients, it can mean something entirely different. It has real consequences.
This isn’t an outlier moment. I asked the hospital. I hope they would say this experience is heavily due to my poor luck. However, I received the answer that this was sadly common for patients.
It’s easy for us to dismiss experiences like this under the commonly used phrase - inefficient systems, lack of patient-centric care, or worse yet, the goal of interoperability. It wasn’t that the hospital wasn’t fantastic to interact with, nor were they unkind. They were individuals doing their best who did not have the processes and systems to help them do their job.
Like many cancer survivors, I have experienced a shift in my perception of time. I sometimes feel like time has been stolen from me during the treatment phase, as my life was put on hold and my priorities shifted to focus solely on my health. As a survivor, time is harder. I want to spend it doing meaningful things. Spending time trying to get my MRI report released isn’t productive, but it is detrimental to my well-being.
Time toxicity is real. Time toxicity is this modern-day ailment that arises from our fast-paced, deadline-driven society. Our society values productivity and efficiency, and we often measure success based on how much we can accomplish in a given time. However, we have skipped on our entire healthcare system.
This cancer anniversary, I hope we can improve these systems. Our oncologists, nurses, receptionist, and advocates try their best. However, the patient experience is horrible despite this. 11 days and 10 hours to receive an MRI report is not okay. That time is filled with anxiety, worry, and a period where we feel frozen.
P.S.: My results are negative (i.e., no cancer detected), and I don’t need a biopsy at this point in time.