A Patient Experience Story

Donning the ‘radiation robe’ is one of the first steps in the process, Dana Caviness says.

I was 42 years old and had just finished my third-ever mammogram when later that afternoon I received a MyChart notification, and phone call, that I needed another one. It can be really unnerving for many women to find out they need more tests, but I honestly wasn’t the least bit worried. I work in healthcare, and I understand this is a pretty common occurrence. And God forbid anything looked suspicious, causing a need for more tests, I also knew that only one in 10 patients test positive for cancer.

So when the second mammogram also looked a little funny, my confidence was still unshaken as I went back for the third time. I was convinced I was one of the nine.

Fast-forward past an ultrasound, bloodwork and a stereotactic needle biopsy, the radiologist promised to call as soon as he had results. He warned, however, it could take three days. Still, I was not terribly worried. Yes, my concern was heightened, but I knew the statistics. I was young, I didn’t have any signs or symptoms and, best yet, no one in my entire family had ever had breast cancer. I was one of the nine.

At 2:58 p.m. ET on Wednesday, April 27, I was working in my office at the hospital. I was so engrossed in what I was doing, I actually missed the first call. Thank goodness the phone rang again, almost immediately. When I answered, I blurted out, “Hey, Doctor! Can we please put all this nonsense behind us now? I’m one of the nine!”

He said, “I’m so sorry, Dana. It’s cancer. You need to see a surgeon and an oncologist as soon as possible.”

So I was not one of the nine, I was the 10th. I didn’t hear another word the doctor said. I don’t remember hanging up the phone, I don’t remember crying, I don’t believe I wrote anything down. But I do remember at some point I opened MyChart to stop the notifications and buzzing, only to see a curious message conveying the findings (see graphic below). 

What does it mean? Why are there so many question marks? Are the doctors still unsure what is wrong with me? But my doctor just told me I have cancer. Why is it invasive? Does this mean it has spread already? Maybe the question marks are actually a good thing — they know I have cancer; they just don’t know if it’s invasive yet.

What is Nuclear Grade 2? How many grades are there? Is Grade 2 bad? Is it good?

Why is malignant written with just the ‘M’ capitalized, but pathology malignant is in all capital letters? Does this mean my cancer is really bad? If the malignancy is "proven," why do I need a consultation? Shouldn’t we just schedule surgery?

The next few months brought way more questions than answers. But since I work in healthcare, I made it a priority to write down as much of my journey as possible. And so far, at month 13, the journey has included two surgeries, four MRIs, six infusions and 76 doctor appointments.

I’ve learned we complicate things in our quest to understand them. I’ve learned we have too many processes or policies that do not benefit the patient. I’ve learned we don’t communicate in a way that is reassuring or confident. In fact, I’ve learned that the simple and basic behaviors are the ones that matter most when you’re the patient, yet they are the same ones we healthcare professionals neglect the most often.

During my first radiation treatment — not the consultation, not the mark-and-tattoo session, not the test-run appointment, but the actual first appointment with radiation — I was greeted by Katie, a very friendly nurse. She escorted me to the radiation room after I had changed into what I affectionately called the “radiation robe.” She was pleasant and made small talk, which I greatly appreciated.

I stood by the radiation table, waiting for directions as she entered information into a computer. I was told to go back by the door to leave my robe, and then walk over to the tiny, extremely uncomfortable table and lie face down. It was probably only five or six steps, but it felt very awkward to walk this distance without anything covering the upper half of my body.

Once I was face down, I could see Katie’s shoes (clogs with a pink-and-purple marble pattern and distinct round toe) as she positioned me on the table, tugging at a paper-thin sheet (not designed to provide comfort or warmth, but there so staff can maneuver your body to the precise location the radiation beams need to attack the cancer). I didn’t care how much tugging needed to occur, I just wanted to be in the exact spot for the radiation beams to kill the cancer.

At some point during the tugging and repositioning, two new pairs of shoes joined Katie and me: lavender-and-gray sneakers with laces and solid white clogs that looked brand new. I love shoes, I’m a shoe person! But I wondered, who are the people wearing these shoes? Why are they in the room suddenly now? Is Katie not able to get me in the right position for treatment? Does she need more help? Does this mean the beams may not hit the exact spot to get the cancer?

Everyone who enters a patient’s room is supposed to introduce themselves. Did they forget? Do they think it doesn’t matter since I can’t see them? Whatever the reason, I didn’t ask for their names either. I didn’t say anything. In fact, I held my breath and squeezed the handlebars (where you place your hands during radiation) because I was convinced my life depended on Katie and whoever these other two people were getting me aligned so that only the right amount of radiation entered my body.

For the first time in my life, I was afraid I might not see my kids grow up, scared my husband might become a widow, terrified I might leave this world before my parents and cause them unimaginable pain. I was afraid for a lot of reasons, all of which were running through my head as I stared at the floor. And the random shoes scared me, too.
I had 28 radiation sessions, 21 of which were face down. I know the color and style of every pair of shoes that entered the room, but most people wearing them never introduced themselves. I could see them shifting and turning as the wearers aligned my body to the perfect spot, but I never learned these peoples’ names.

As I reflect at month 13 in my cancer journey, the nameless shoes tug at me — both as a patient and as a healthcare worker. A name, something so simple but of immense worth. The start of every connection, the only thing from birth until death that does not change, the most personal aspect of a human being, something of this magnitude cannot and should not take on a different form, such as shoes, ever — most certainly not at a time when someone’s life depends on you. But it happened, and I want to prevent it from happening again.

For all the radiation oncology patients out there, staring at the floor and nervously watching as shoes scurry below, don’t let shoes “replace” a name! And for all the radiation technologists saving lives, share your name! Make the connection between your name and your shoes — and then keep working miracles.

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By Dana Caviness Guest Writer, ACR Press