Negative Cancer Care Experiences Shaped My Life

There are several instances that shaped my perspective on life, and all centered on health care professionals not seeming to understand the fragility of a person diagnosed with cancer.

I took urging her oncology office for scan results before Bartos could even receive them.

The radiologist, when describing the markers on the breast cancer, suggested, “If you were going to have one, this was the one to have.” I was lying on a table for a specialized X-ray procedure; it was not the time to tell me that. The diagnosis was only about a week old, and I was still coming to terms with it. I assume he was trying to be reassuring, but it didn’t work.

On a follow-up visit to my very competent surgeon, in response to my saying I was experiencing depression, the surgeon responded with, “A lot of my women tell me that.” I wondered why she hadn’t thought to warn me of the possibility sooner so I wouldn’t think I was going crazy.

That depression led to some digestion issues which led to a sonogram, followed by an MRI because there were suspicious spots on my liver. I waited, rolled up in a ball, for a couple of days for a pathology report, which was delivered by my primary care physician — from only a phone call without full information. I was told there were suspicious spots and because of my history, further investigation might be warranted. She interpreted that as the cancer had returned.

I then had an appointment with the oncologist, who had the full written report that identified the spots as focal nodular hyperplasia, a benign type of tumor — not cancer. Imagine what that lack of information does to a person. Ah, but they weren’t finished with me yet. The oncologist recommended the gold standard: CT scan (testing to determine a tumor’s size and location). The spots were still there, and going with Occam’s razor (a problem-solving principle), since blood gathered around those spots, it must be cancer. Thankfully, a radiologist said that blood also gathers around focal nodular hyperplasia. My oncologist didn’t know that.

So just to be sure, they did a Feridex MRI, a special type of MRI that uses iron to see liver lesions. The results were what was expected by my clinical team, but just to be really sure, the clinicians decided to subject me to a liver biopsy. In my panic, as I lay on the table, I heard the radiologist incredulously say, “I don’t see any cancer here,” as if to say, what are you doing to this poor woman? But it took another week for the oncology office to confirm that — and I had to call them to find out.

Imagine the roller coaster those two weeks engendered. And how much anguish could have been avoided with more care. It deepened the depression for a year, and 20 years later, my phobia about health care continued.

Each mammogram is nerve-wracking and I have to fight to get the orders for a diagnostic mammogram so that I get the results immediately, rather than wait an excruciating day or two.

So how do those pivotal moments shape my perspective on life? Just this week, I joked about arm cancer — I know that there isn’t such a diagnosis — but any strange lump can lead one down that path. The enlarged bicep is probably the result of a detached tendon or ligament but is definitely not arm cancer.

This post was written and submitted by Lorlee Bartos. The article reflects the views of Bartos and not of CURE®. This is also not supposed to be intended as medical advice.

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