Maybe it's a generational thing (I'm a Millennial), but when I get news that's confusing or scary, my first urge is to research it extensively on the Internet.
I had surprisingly little information
My urologist discovered the cancer in my bladder after an ultrasound and a cystoscopy. Staring at the screen in his office during the cystoscopy, I remember seeing what looked like sea coral floating on top of my bladder, pink as bubblegum. But when I left the office, despite having seen the tumor myself, I had surprisingly little information. Would I need radiation and chemo? We didn't know. What stage was it? That would be determined later through a biopsy. Would it kill me? We're not there yet, the doctor said. All we knew for certain is that it looked like cancer. We scheduled surgery immediately.
I went searching online
So in lieu of any real answers, I went online. Looking back, I know my doctor gave me exactly the right amount of information, because we knew nothing with any real certainty. But at the time, I felt dizzy with anxiety, my brain racing and desperate for answers. And so I Googled. What were the survival rates? What did I do to deserve this?
I've had doctors tell me not to Google things in the past, and I can see why. When I started Googling about bladder cancer, one of the first things I felt was frustration and a deep sense of unfairness. According to statistics, the vast majority of bladder cancer patients – about ninety percent – were over the age of 55. The majority of patients were men who had been exposed to toxic chemicals through their workplace, or had been smokers. I was none of those things. The more I googled, the more offended I got. Why me?
With more knowledge came comfort
But surprisingly, Googling about my disease also provided me a measure of comfort, too. I learned that for this type of cancer in general, the five-year survival rate is an astonishing 77 percent. Even better, if the cancer is non-invasive (meaning it hasn't grown outside of the bladder wall), the odds of surviving five years past diagnosis are 96 percent. Although we wouldn't know for sure until my biopsy, judging from the tumor's appearance, the doctor told me it looked like early stage, and non-invasive.
My anxiety started to abate
With that knowledge, my extreme anxiety about having cancer started to abate a little bit. It's one thing to be told you have cancer – your emotions jump from panic to depression to anger and all across the spectrum of grief. But to know nothing about that cancer or how it will impact your life just magnifies that grief tenfold.
Doing your own research: the pros and cons
I wouldn't recommend Googling your medical condition to new patients, exactly. Especially on Google Images, you might see some things that are graphic or a worst-case scenario, and you might just end up with more anxieties than you started with. But in some cases, doing your own research can truly help you find comfort. Eventually, I learned enough about the disease and what to expect during surgery that I was no longer crying every time I thought about it. That relief was not something my doctor could have given me at the time, with the limited information we had, but it was gift nonetheless – one that I gave myself.
Have you ever experienced caregiver burnout?