Test Results, A Warning
How to manage your mental narrative after a cancer diagnosis & during treatment
Nothing really prepares you for a cancer diagnosis. Most cancers are nefarious, lurking and growing within us without warning. For some cancers, there are screenings; for others, there’s unawareness until we notice something wrong with ourselves, our functioning, or a completely unrelated incident reveals the cancer to us. Regardless of how you find out, the news is unwelcome to say the least. It might be completely terrifying depending upon what kind it is, how far along it has progressed, and what the treatment for it will be. No one can predict how they will react at hearing the news or to any related information thereafter. For most people, a cancer diagnosis can be a defining moment: a before and after line in the sand. As awful as this news may be, know that you can do more to manage your ongoing thoughts and responses as you begin and continue on your treatment and recovery journey. I believe what you can do may literally save your life, and I’m going to tell you why and how.
My Approach
In my very first post for this blog, I detailed the story of my own cancer journey. What I didn’t go into on that post, however, was some of the deep thinking and decision making I did. For context, prior to my diagnosis, I worked as a qualitative research analyst and business writer. Routinely, I took on emerging or unfamiliar topics and researched the heck out of them in order to write useful, cohesive articles, blog posts, reports, white papers, and presentations for my clients. My research consisted of first-hand interviews with subject matter experts, frequent Google searches, reading vast troves of information, data points, and statistics, and pulling lots of disparate pieces together to develop themes, trends, and conclusions.
Needless to say, I knew a thing or two about researching…and the possible downsides to doing so. “Dr. Google” can be a dangerous entity to consult. Upon receiving my own full cancer diagnosis and conscious of the fear and anxiety it was already generating in me, I decided very early on that I was really going to curtail my research. I felt that what I was about to face would be daunting enough – why color (or discolor) it with all kinds of statistics and stories, some of which could really drag me down a rabbit hole of fear and despair? Instead, I set out some very clear boundaries for myself when it came to understanding my situation:
- I would limit my discussions and questions to “trusted parties” only. They included my treatment doctors and individuals who I knew or who someone else I knew had survived a similar breast cancer.
- With my doctors, I didn’t want to discuss statistics on outcomes, survival rates, and other similar data points. These things, as I knew, were variable, and as long as the data wasn’t 100% death – which it wasn’t and isn’t -- I stayed focused on being an individual, not a data point. Instead, I asked my doctors to discuss only MY treatment, MY possible side effects, MY decision paths, MY test results, and the like.
- I promised (made a deal with?) my doctors that I would not look at test results in my patient portal, especially if I hadn’t heard from them first. In return, I asked them to provide me with communications regardless of test outcomes. In other words, if test results showed nothing to worry about, I wanted to be told that specifically and not have them assume that I would interpret no news as good news. I want to come back to this whole point, because I believe it’s paramount.
- I would resist all urges to conduct my own research about the two cancers I was battling, and I asked my friends and family to avoid discussing with me any research they might decide to do. I couldn’t stop them from doing their own research, but I could ask them to respect my boundaries.
- I chose to focus on remaining positive and that which I could control, not which I could not. In the battle against cancer, the thing I could control the most was my thought. It was so difficult to not have anxiety and fear in the first place, so I chose to be also open to new methods of thought control and finding inner calm. For instance, I used visualization. I listened to the sound of ocean waves and babbling brooks and imagined this water flushing the bad cancer cells from my system. I used meditation. I got hypnotized. I got massages and took long hot baths. I remained as physically active as I could, enjoying as many endorphin rushes as my reduced activity level would generate. I distracted myself with friendly conversations or even by watching funny shows. Every day I worked to remain as even-keeled and positive as possible. I sort of put myself in a “black box” of positivity. I never viewed maintaining this position – this mindset – as living in denial. No, in fact I saw it as a very deliberate effort of choosing to focus on living, not fearing.
Fast forward by nearly three years. I’m still here. I’m thriving. And I’m still choosing daily to focus on positivity.
The Warning
Let’s revisit Point #3 above now, the deal I made with my doctors. These days, many major healthcare systems utilize electronic patient portals. These patient portal platforms deliver several functions: Appointment bookings, bill payment, patient-doctor communications, and test result postings, to name a few. The way these systems work, it is not uncommon for patient test results to be posted to the portal before the patient’s doctor even has a chance to look at them. The patient gets an instant notification that a new test result is available, and most patients end up looking at their results well before their doctors!
In my opinion, this is a bad set-up. Test results are not documented in laymen’s terms; they’re written using medical terminology. What happens when a patient looks at terminology she doesn’t understand? She goes to Google and looks it up! And before she knows it, Dr. Google provides a host of information, some of which makes things appear very bad for her. She starts to panic. She starts to think the worst. By the time she talks to her doctor, her doctor needs to spend more time explaining things or undoing the damage that all that Googling did and talking her off the ledge than advising her on things that actually matter.
For this reason, doctors really loathe patient portals. Countless doctors I have spoken to agree that the current set-up is bad and mentally harmful to patients dealing with life-or-death conditions. I didn’t need to be told this more than once for me to feel confident that my decision to not look at test results in my patient portal was the right one for me. I figured that the few hours in between the results posting into my portal and the communication from my doctor was – and still is -- is the hardest time. Each time can be an exercise in maintaining my serenity and calm.
And it is hard work, trust me. I have had to re-do scans and tests in the three years since being declared cancer-free, and the old anxiety demons creep up. I’m no Super Woman, but I just work to remember there is only much I can control. Anxiety and fear is normal, but feeding into it can be toxic.
That is why my advice to all newly diagnosed cancer patients is to not look at your test results before hearing from your doctor first. Your doctor and the team of medical personnel supporting him or her are the professionals. Let them give you your news, not some cold, impersonal device screen.