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When health IT became personal: My journey with breast cancer

Two years ago this month, I underwent a mastectomy at the age of 40. It’s ironic given that October is breast cancer awareness month, because for me, while cancer is always now semi-present in my mind, September is the month when the disease looms largest. That’s because it’s September when I go through the cadre of tests that are now a part of my annual experience, and it isn’t until those are in the rear view mirror with an “all clear” that I can breathe again.

I’ve worked in health IT for more than fifteen years, and thankfully, our family hadn’t had much of an encounter with intensive health care before 2013, which meant that technology’s role there was conceptual to me personally. Yes, I went to an OB practice that refused for nine years to go electronic, and it was annoying when my son’s surgical record couldn’t be shared with his pediatrician in 2008. Luckily, though, health has largely been our norm.

Recently, though, health IT has been personalized for me in an entirely different way, and I understand it from a new perspective. Thankfully, unlike many people who speak about the challenges they’re still encountering, my experience has largely been positive since becoming a breast cancer patient.

First and most importantly, unlike many others who face a harder path, my cancer treatment experience did not include chemotherapy or radiation. If I had been diagnosed several decades ago, that would not have been the case – the standard protocol for everyone was a double mastectomy, removal of all armpit lymph nodes, radiation and chemo. Because I was fortunate enough to be diagnosed in 2013, however, I have already benefited from the precision medicine experience.

That sneaky little tumor that caused so much upheaval for me and my family was sliced and diced for genomic testing (I do admit I get a little pleasure from that image), with the results dropped right into my electronic health record. The analysis of the tumor’s genetic markers came back in such a positive frame that my doctor was able to recommend surgery followed only by hormonal treatment. That was a really good day.

Now, in surveillance mode, I continue to think how lucky I am to be a patient in the electronic era. I connect with my care team via their new portal pretty easily, and my oncologist uses her system to pull up all kinds of research findings to facilitate our ongoing discussions about the best path forward.

My most recent intersection with health IT was just last week. I logged in late at night to find results from my recent mammogram and MRI saying I am cleared for another six months.  Unlike even two years ago when I had to wait, sick with worry, for several weeks for some of my results, I was able to return to peace of mind in just four days because of electronic access to those results. I requested they be sent to my primary care provider, and more importantly, I could remove the worry from my husband and children who know what September means, too. And I went back to sleeping well.

You can imagine that I am hoping not to have any acute need for health IT any time in the near future. But if we do, I am most certainly grateful to have that option.

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